English Community

I was first diagnosed in Jan 2020, so I have not be'en here for a few years. Now, I am back. My ca125 tested this month went way up from last Nov. I have had all kinds of issues for almost a year. So many tests done. All started with bleeding  that lasted all day. Twice this has happened, over a few months apart. Back aches. The Drs said it was my kidneys and it came up nothing. I do have a spot on kidney but they say its nothing. My theory is, I had a cysts that ruptured on my kidney, and that caused the pain and bleeding. I did have a very bad infection and was put on strong antibiotics 2 times a day for 10 days.
Now, I deal with sweats and burning pain , feels like my body is on fire. Anyone else experience anything similar? Would like to hear from you.
Now I am waiting for the oncologists and another scan for the next plan of action.
This was not suppose to happen to me. Life is the S----.

@babs272
  Oh what a place to be. Angry would be one I imagine. I feel for you and many of us have been in your place. It hurts, it sucks, it is maddening, it feels "unfair".  All normal reactions to your post and what you are going through.
  I am not going through everything you are currently going through. Do you have HGSC or LGSC?   When was your last CT scan done?  I have sweats but they are surgically induced menopause symptoms and my medication (Letrozole) worsens them a bit. Pain I have since surgery and mainly left flank pain but more recently right as well which is from my hydronephrosis (right is worse so left is doing all the work). Are you on any preventative or maintenance medication? When is your next Oncology appt?
  Waiting is tough and our minds can take us many places. Try your best to stay in the present and enjoy what you can. Live day by day and reach out for external help if you need it.  Here is a start but also get in touch with Wellspring if you need more. They have many resources and are very helpful.
 My thoughts are with you and will be here should you need to say more or vent more.

My recent scans were for other reasons. No one was looking for cancer then.The blood work I just had done, was enough to know there is cancer.I am just waiting for the appointment for the scan for this one. It may take another month before I get it done to find out where it is and how much.I should have gone on maintenance drug, Zujula in Nov 2021. I refuse it after I was accepted for it. Now, I wish I tried it. I am 68 years old and the burning sweating pains are the worse.

@babs272
  You are in pain. May I suggest you speaking with your doctor to see if you can find a way to manage the pain until you have your appt with the Oncologist? Or if you are on something and it's not being effective enough letting them know?
 We can all say should have, could have, would have. We can't turn back the clock only go forward. We make decisions based on where we were then emotionally, mentally and physically. We can beat ourselves up if we think "if only should have". Try to find peace in that it is now being investigated and a plan will unfold. In thr meantime, getting your pain under control will help your mind.
I hope some of these words help you.

 I am on Lyrica and Celexa just recently started.It has done nothing for my sweats at night. I will increase the Lyrica to see if that helps. I also have Fibromyalgia. So my nerve pain just got worse from chemo treatments. Carbo/taxol does alot of damage to the body.

@babs272
 Yes, chemo can do a lot to one's body. Some ladies have few side effects and others have more and long lasting effects. No rhyme or reason to it.
 To my knowledge, I don't believe those drugs would assist with the sweats but do they help with pain? Maybe contacting your doctor before increasing it would be wise and to see if they have any other solutions?  Having fibromyalgia prior to this would cause a wrinkle in things for sure.
  Keep us posted.
Take care

@babs272
  How are you doing?  

I am doing ok. Waiting for oncologists to call. Dealing with the headaches from increasing Lyrica. Dr wanted me to start 2 lyrica from the start. I choose to start 1 for a week before increasing.
Are you a medical profession?

@babs272
 In answer to your question, no it was recommended that I discontinue working last June and 'enjoy life.'  It was a difficult decision to make and would have been 30 years this past Nov if I did not retire before then. I gave back my license as well as the reality is that I will not return to working. I was a very dedicated and empathetic massage therapist who often put my clients needs over my own. Some may think it was dumb or I shouldn't have but I enjoy helping people and why I got into the profession when I did.  I also did certifications in Mental Health Aid for Adults  Seniors and Kids as well as A.S.I.S.T and ASK.  
  I enjoy assisting in this forum and was honored when I was asked to be a peer support. 
  I am currently doing a lot of reading on dying and grief by raiding the Hospice library when I attend my group weekly.
  I am 51 and have LGSC that is acting aggressively. I am doing my best to prolong getting a nephrostomy but it may be in my very near future. I have things to discuss with my new Med Onc this Thursday and then with my Palliative doctor on Saturday.
 Although I don't have HGSC, I read all the posts the ladies put up so I can educate myself on it and what I don't know, I go looking for. 
 If nothing else I have learned through this,  is that it takes a team to get through this both medically and personally. Your journey is your own and how you navigate it. Introducing/taking away meds or changing them in any way should always be discussed with your medical team. Even if it is new information, it is surprising sometimes to hear what they have to say and I say that in a positive manner not negative. 
 My goal for this forum is to 'normalize' dying and know it is a grieving process for all involved. Too often it is this hush hush thing and not to be discussed. There are too many things to do (if you can) before you die or have been told to 'enjoy life' both legally and leaving any legacies. The latter can also fulfill your days in a positive manner. It can also be very healing in ways and/or open up conversations with your friends or family.
 Anyways, long winded and hope that answers your question.

Thankyou for that. You are a very honst person. I am scheduled for a MRI in about 3 weeks.Yes, is there somewhere..I have had alot of scans over the past 6-9 months , mostly dealing with thyroid and kidneys. At 68, almost 69 I feel as though I do not have the energyu to go thru chemo again but, if thats the route I need to take, I have to give it a shot again. I have 7 Grandkids I want to be around for. They keep me young and busy. Ages 3 to 11.
I also booked a mammogram at end of month, since I am dues in MArch.


.

Felt good all day yesterday. Today some stress had me thinking again. Waiting for MRI call for appt. Grandkids staying Sat night, so it takes my mind away for awhile and to focus on them. Grandkids are the best!!! 11 and 8 yr old this weekend.

@babs272
 Stress or anxiety can get the best of us so you are not alone there. ??
  Yes, I have heard grandchildren are awesome. They will definitely help you keep your mind elsewhere.  Anything you have planned specifically when they come over?
  I tend to clean or something else mind numbing when I am like that.  I feel at times that I am almost in that 'nesting' mode that you go through before you birth a child.
  Today my son helped me clean the house and then he left to go to the gf's and I came home and watched Pride and Prejudice.

I think my grand daughter wants to bake,I love to bake.Grandson wants to learn to sew but I don;t think that going to happen yet. He wants me to make pants (red) for him.We willprbally bake and play UNO if we can't take the little dog for a walk. Its be,en raining alot these few days.And, I have to make mac and cheese from scratch. No one makes it as good as Nana's.LOL They will keep me busy.
Nice to have an older son that helps clean the house. Thats a big help. HAve a great day

@babs272
  I love baking too.  Sewing eh? That is awesome that he wants to learn.  Challenging I think to have the patience to teach though...good for you.
 There is another game called Phase 10 or Exploding Kittens that is a card game. We have played the latter with my kids and my elderly Aunt. 
  Taught the same son how to make the homemade mac'n'cheese last week.
Yes, it's nice they can help out. He's in between jobs so I taking advantage of having him here. 
  Enjoy your time together.??

Still waiting for MRI. Mammogram on Tuesday. This waiting game is getting to me. Takes so long.

@babs272
  How you doing gal?  The waiting game can get to the best of us.  Have you utilized any of your outlets to let some of this go?  I enjoy writing and reading right now for my escapes. If I am truly bothered by something, I clean like I am nesting and that seems to occupy my brain for awhile.
  Any plans for the weekend?

Good to hear from you.I finally had my MRI on Wed.They had a cancellation, so I took it. Results next week. I am starting to feel , not too great. Taking ativan  0.5 twice in a day, along with my celexa and Lyrica. My nephew is coming today to stay a few nights before he heads back home to China.He is here to visit my mother, his grandma in the home.
Maybe I am under more stress than the usual. But, I will try hard to enjoy the visit . May not see him for another 4 years.LOL 
I am reading alot of info on the site. Alot of us have recurrence of cancer. I feel like this time its a big one to deal with.
I did manage to crochet a few hats, actually 5 this past week. Trying to keep my mind occupied. I hope you have a great weekend.

@babs272
 Hope you are enjoying the visit with your nephew. Different conversations than what you are used to daily when someone is "new" around.
  Chilling this weekend. Went for breakfast with hubby this morning and I can't tell you the last time we remember doing that. Incredible how time flies.
 My friend who is recently widowed, is doing okay. I am bringing over a "take out high tea" and we will dine together on Tues at her place as she isn't ready to go out yet. 
  You will have your results soon and it will put to rest all the questions or what ifs you have floating around.
 Yes, it does seem like quite a few have recurrences currently. 
 Sometimes it's like a hamster wheel you can't seem to get off of.
 In the meantime, take one day at a time and enjoy the moments/memories being made.

Thankyou for your encouraging words. I needed that. My nephew leaves tomorrow , back to his sisiters for a few more days before heading back to see his wife in China and back to teaching. there.
We took him to see my mother, his grandmother and it took awhile for my mom to be happy and convincing her to go out for lunch with us. She finally did come with us.She is 89 and things not good for her at the home. At least Jesse got to spend a few hours with her.
I hope by Wed to have my MRI results. Then we see what happens next. HAd one of my hot body heat moments at 5am and when I get them, I cannot get back to sleep.
My daughter took her cousin out to her place for the evening, So my husband and I have it quiet for awhile until he comes back. Then my nephew is up early to catch the bus back to Lumby,BC.
I cannot rember the last time my husband and I went for breakfast.It takes me awhile to get going in the mornings. LOL I use to be a morning person until Cancer hit.Starting to feel lazy.
Always nice chatting with you.Have a great weekend

MRI results are not looking good.The cancer has spread in alot of area. See Oncologists next week if there is any hope for me. My family Dr says it just does not look good. I have known since Nov and it look this long to get the MRI done.I feel like my life is being taken away.

@babs272
  Hey Girl!  Chin up! No, the MRI results may not look good but you still have the ability to direct things the way you want them to be.  Find out what they are saying and prognosis both good and bad meaning treatment options versus no treatment options and then sit with the information.  It will take you time to process all of the information so don't decide the day of.  You will come up with more questions than answers once you get over the shock of the information.  Ask if you can have a telephone follow up call a few days after that next visit you are going to.  
  Once you know what treatment options lay ahead then you will have the ability to decide what to do or not do.  I do everything based on quality of life.  If I do "X" it looks like this and won't or will let me do "Y" etc.  I get that choice and no one else same with you.  Everyone wants you to fight do everything you can etc but they don't live it you do. So let yourself and your emotions do what they need to do and cry, scream or whatever it is you need. It's okay and whatever you decide is the 'right' decision for you.
 Now for what I said about the direction and control, I do mean it.  Once you go through your emotions of anticipatory grief and let yourself, you will become empowered somewhere in there.  There is still a lot you can do.  There are living legacies, preparing things for your loved ones like legal etc, what you want things to look like when you pass etc.  
  Enjoy your time with your loved ones and the time you get to be home and the sunshine outside.  I know this all sounds rosy but I have been where you are and I am on this side now planning and deciding my own journey.  I know despite what they said at my last visit where things are headed just like I knew my recurrence was happening before the 'evidence' was there.  But for now, I have much work to do and friends to see and laugh or cry with them.  
  You are processing a lot. If you feel up to it today, join our 1pm meeting and if nothing else, follow the conversation along and maybe you might want to join and maybe you don't but you will have the peace of mind that you are amongst like minded people travelling a similar journey.
  Like I mentioned before, I am if nothing else, honest to a fault. I am definitely not a Willy Wonka either.
  I know I am here for whatever you need and others are too.  Despite having a sleeping pill, you will probably see with timing of posts, I don't sleep much anymore so send a message along anytime.  There are many of us who don't sleep well and you never know who will respond and you will not be alone.
  Hoping to have you join in today and if not, watch the sun sparkle off the snow in the comfort of your home.

Thankyou Strong Woman, I needed to hear from you.

where do I find your 1pm meeting? Is this BC time?

@babs272
  Find it on the discussion thread 
Teal Thursdays

@babs272
  Glad you found the meeting and apologies about my not being present. I know you are having a struggle. Anything else you need assistance with?  Need to vent anymore?

I am good Just got a call from hospital for another Scan on the 9th. That went fast. Dr put a rush on it , or it was going to be another 4 weeks again.
Daughter coming over after work, to vent. I am ok.

@babs272

@babs272 and @Strongwoman

your posts resonate with me. Last week I started having symptoms ie severe pain in right flank and mid back. The pain is worst at night which apparently tends to be from lymph nodes according to my oncologist.  Now waiting to hear back about treatment. It’s 2nd recurrence for me and third chemo. I had a 7 months break during which I lived my best life, fulfilling retirement dreams, traveling for my 60th BD and Christmas in Florida. Don’t want to have regrets.   

@Strongwoman

Absolutely, I too try to find joy daily. Living with cancer sure gave me much clearer perspective on what’s important.  Did some cognitive behaviour therapy that helped as well.
Glad to have this website. Safe forum to listen and get information from people going through the same.  It would be emotionally much harder without your support.

I like movies/humour very much so yes recommendations welcome  :)

@Bojenka
  Before I recommend anything I find funny......what type of humour do you enjoy?  I love period pieces myself especially for dramas.  I recently watched on Netflix a NEW movie added to it, called Gifted Hands.  I am not sure if he was the first pediatric neurosurgeon solely or first Black one.  Regardless, the story is about how he became one and I will say he overcame many obstacles to get there. His Mom raised him and his brother by herself and was illiterate and when he was younger he was getting F's in his schoolwork.  It is an amazing story, about 1 1/2 hours long and was wonderful and inspiring.  I would highly recommend it.  He definitely overcame so many adversities which in and of itself is amazing.

@Strongwoman
I like wide variety of movies including period pieces also.  I will check Gifted Hands, thanks.
Did you see New Amsterdam ?
   

@Strongwoman

I just wanted to say how much I appreciate you and what you provide for this community in your role as a peer support volunteer. I've read many of the discussion threads, and can see how much time you put into responding to each and every discussion.

I particularly want to let you know how much I admire and appreciate your choice to do what you can to normalize death, by writing so clearly and transparently about your journey, your current treatment options, your plans, your thoughts and feelings, and about how you're approaching this phase in your life. 

I am at an earlier stage of the ovarian cancer treatment journey, and don't yet know what my path will be, but I find reading your words very helpful as I reflect on the possibility of an earlier death than I had been anticipating.

[Context: I was diagnosed with HGSC in Oct 2022, initially staged at 3C,  then "upgraded  :/" to stage 4B after a nodule was found in my spleen. I had three rounds of neo-adjuvant taxol/carboplatin, then debulking surgery - which went well, no residual disease - and am now in the adjuvant phase of chemo, 4 more rounds to go.]

Prior to this diagnosis I thought I had accepted death as an inevitability, and thought that I was at peace with it. Turns out that I was at peace with it because I thought it was way off in the future. As soon as I got the diagnosis and looked at the outcome stats, I felt overcome with absolute terror. 

I have since done a lot of reflecting on the reality of my own death (whenever it happens to happen), and have spoken about it with my partner, my adult kids, my friends, even my colleagues, and in those conversations, became aware of the discomfort many folks have with the subject (understandably, for so many reasons). The current North American culture compartmentalizes death in a way that doesn't help us deal with it as an normal aspect of living. 

What I think that what you are doing by talking so openly about your experience is opening the door to conversations that could really be helpful, and you're also helping all of us feel less alone as we face something so scary. 

I for one have benefited greatly from your comments, and I just wanted to let you know that.  <3

Much love to you as you go through your days.
I admire your spirit so much. 

@Strongwoman

Hi, I wonder if I can ask your opinion. For a week now I have been having pretty severe right flank pain. I reached out to my oncologist who is scheduling a CT scan in the meantime they gave me Tramadol for pain.  For a couple of days the Tramadol gave me relief but it doesn’t any more.  Other than GP and oncologist is there anyone else to talk to about pain management ? 

I started watching Ginny & Georgia, very cool show :) 

@Bojenka
  Yes, I can answer that the best to my ability.  I think you should contact your Oncology team and/or your family doctor and let them know it is not working.  You might want to ask when you are speaking with them if the Tramadol is a short acting or long acting one.  I did not know much about pain meds until recently.  I am now on a long acting one which lasts 12 hours and is slowly released through the body during that time.  I have short acting ones that I can take in between should the long lasting one not be working as well at managing my pain.  That is an example between the two for your reference. So, if you are unaware which one you are on, it is time to ask.  Alternatively, you can mention, that you do not feel the Tramadol is working as effectively as it was and inquire about another pain medication.  It will depend on your case history, etc for the team/doctor to determine what to put you on.  There is a lot in their arsenal of pain medications that I doubt you are out of options at this point in time.  It is worth a phone call to get some answers especially if your pain is not being managed.  It is one thing that they do want under control.  As for speaking to anyone else about pain management, I am not sure what you mean by that. Can you elaborate more on that and what you were thinking when you wrote it. I can then better understand and may be able to offer some suggestions. 
The other thing to remember with pain medications is that they can be stool hardening so it is important to discuss ways to head that off with your team as well.  I take Restoralax daily mixed in with a powdered veggie green supplement to assist with mine.  Some do well on Metamucil alone and some take Senokot.  Restoralax pulls moisture in via osmosis and Senokot is what helps make the motility (movement) occur in the bowel to move it along and out.  
It is important to understand the roles of each.  Some come up with their own cocktail of what to take with the guidance of their team. 
Without knowing when your CT scan is, I do think this is the best way to handle things at this point for yourself. Let me know how you make out once you have reached out.
Take care and chat soon,

@Petra
  Thank you...a thousand times thank you and I truly mean it.  I had tears in my eyes when I read your post. I was doubting myself and what I was writing and asking myself if I was doing it for myself or for others.  A bit of both, I believe but truly do want to help others out there.  
  There is so much that goes along with this disease and it does not matter whether it is your first, third or gosh knows how many recurrences that you are experiencing.  What is real are the emotions that you feel that go along with it.  I have searched and searched and have come up empty handed when it comes to this part of things.  I know what I, myself, am facing and struggle to find the appropriate material to help me through this.  I find it goes to recurrence, they talk about palliative care and its role and then bam....right into end of life and last stages of what you will see.  There is nothing in between.  I am not sure if it is due to others not sharing or some not being able to know how to vocalize what they are feeling and experiencing or some don't get a chance to.  Whatever the reason, I am thankful that I can do this and that I can leave some nuggets of information for others as they go through their own journey.  You are right about talking to others about this. I learned this weekend that as my hubby sits through his denial stage that he isn't talking to anyone about it.  I am thankful I speak to his friends and will be letting them know when I get my results and where we are headed next so that they can support him.  He can't do this alone and he needs to speak to someone about what he is feeling.  I watch and know inside what he is going through especially as I support a friend whose partner is going through cancer and listen to what they do to 'get by' as I would not say it is a healthy way of 'handling things'.  I can see in this person, some of the things my hubby will do at some point in time as well.  I have my own emotions to go through and know the talks I have coming with my hubby and boys first, my elderly Aunt and my parents.  Then from there it will trickle down.  Yes, I am the inside of the circle and need the support but because I know more medically than all of them, it is hard to be that centre all the time.  Emotions are hard at the best of times let alone at times like these. I do my best and juggle my balls and continue to parent as I go along. I made sure hubby had a wonderful birthday on Saturday and that it will be memorable for him.  I have chatted with my youngest and my next task is, getting him to choose a dinner item to make one day a week and I will walk him through making something. That way, I am not doing all the work (I do enjoy cooking and baking) and he is getting the best of me while he still has it.My oldest, I am still working on why one wants to be cleaner than he currently is.....believe me....it's a hard task but I am keeping at it.  Those are free and shareable things and if you really want to look at it 'gifts' for them all. 
  I am happy to hear you have initiated some conversations and that you find some solace in what I write. It is the quality of life that I want until this disease takes it from me.  I would like others on our forum to be open about how they feel on any given day especially if it is sad, anger, unexplainable feelings as we face our own challenges.   Even as I face this next phase of things I keep coming back to that phrase from the fictional book entitled "Under the Whispering Door" --'It's never enough, is it? Time. We always think we have so much of it, but when it really counts, we don't have enough at all."
Such profound words for all of us to consider.  The question remains, what will YOU do with the time you have?  What do you want it to look like? Who do you want to share your time with? All I know is that it is precious and I am as well so I choose to surround myself with those things that bring me joy as I don't have the bandwidth or space for anything else as the sands in my hourglass keep falling through.
  I wish you the best on your journey and when you are ready to share, kindly do as I would like to walk beside you in your journey. 
 Thank you again for your words in your post, they truly warmed my heart.

@Strongwoman

Thank you. Good point.  
It takes a few days to speak to my oncology team, and sometimes
2 weeks to GP.  Thanks to OVC and all of you I can reach out and ask questions. I am grateful for this forum.
In the meantime I will ask the pharmacist if the Tramadol I have is short lasting. I am to pickup new prescription in a couple of days (pharmacy had to place order) and that will be slow release .  
All of this is new to me, as I am first in my family to have cancer or serious illness for that matter.  

@Strongwoman

Yes, I do find solace in your words, and I really appreciate the bread crumbs that you are dropping on the path for the rest of us to find as you forge ahead into this phase of your journey.

I don't know that I would have ever thought about it this way prior to this diagnosis, but I've since come to see it as a gift that this disease does give many (but not all, I know that) a fairly long time to prepare, and I think that your words will help many in that preparation.

I appreciate you so much for your courage in sharing, and regarding your wondering about whether you were sharing for yourself or others, I think that even if we are speaking our own particular truth, we are at the same time speaking for the collective. Everyone's story will be different, but the general themes are the same. You are giving us all a gift by sharing your experience, your thoughts, and your feelings as you go through what you are going through. It is a generosity on your part to be extending yourself in this way.

Regarding conversations with others, it is indeed interesting how differently we all process and cope.

I've discovered that my partner is happiest when I seem to be in good spirits and is quite uncomfortable with any talk that isn't of the "we've got this!" variety. He seems to believe that if you let in a speck of fear or doubt it will manifest as a bad outcome. He gets afraid when I'm not in a positive frame of mind about it, and I have to say, that makes connection on the topic quite difficult. My parents seem to be in frank denial, and cannot seem to wrap their heads around the idea of recurrence. 

Meanwhile the youngest of my kids (21) flew home the minute she heard the news so that she could spend every minute of the treatment with me, in case things didn't go well. She's also the one that said that the idea of losing me is making her understand how much she had been relying on me as the be-all-and-end-all guide in her life, and that she is recognizing that she could start learning how to rely more on herself as preparation for the time when I won't be around, whenever that might be.

We're all so different.

I love that you're spending such concrete and practical time with your boys. 

And I would love it if you keep on writing here about your experiences. I for one will be an avid reader. 
Also please know that if you don't feel like writing, that's okay too.
I am with you in spirit, even though we have never met. 
As you say, nobody walks alone.

@Strongwoman
Thinking of you. Seems that’s been a trying week for a lot of us.

Need a new oncologists. Is it possible? My oncologists made me feel worse today during our appointment. I am not sure what new chemo I will be having  next week. She was going to get back to me after thinking on it. Hughhhhh!
I want answers. I hate the waiting game.

@Bojenka
  Thank you!  How has your week been? 
@babs272
  Waiting is very difficult and our minds wander to places it should not creating scenarios that are usually not good. It's natural but can be very unsettling for us. Attempt to find an activity to 'quiet" your mind...like a walk, yoga, tea/coffee with a friend, go for a drive, change of scenery...these are all things that can sometimes help us in getting out of our funks.
What has you so upset you are wondering about switching Oncologists? The fact that you don't know what chemo 'cocktail' you will receive next week or did something else occur?
This weather has NOT been helping anyone as far as mental clarity with all the grey and gloomy weather we have been experiencing (in Ontario).  Seems Mother Nature is having another tantrum today!  Finicky little witch she is! ??
@Petra
 How has your week been?

@Strongwoman
I've had a decent week. Currently on day 11 of chemo round 6. 3 more rounds of chemo to go.
I had 3 rounds of neo-adjuvant, then surgery, and now in the middle of the 6 post-surgery rounds.
I found this round the toughest so far to recover from - side effects lasted longer, and I'm more tired.
My body has been doing a great job of recovering each time up until now, but I think the cumulative effects are starting to take hold.
I'm expecting that the last 3 might be a bit rough, but thankfully only 3 more to go (for now!)

I had 2 ER visits in the last couple of weeks for tachycardia and chest pain - EKG and heart enzymes normal, so not a heart attack -  but BP and HR significantly elevated - pulmonary embolus ruled out, infection ruled out, so diagnosed with presumed pericarditis and now scheduled for an echocardiogram. The elevated BP is likely from the Avastin, the chest pain is presumed to be a symptom of the pericarditis, but they're not sure what to make of the elevated heart rate. Whatever it is, I sure hope it's a temporary side effect that clears up once treatment is finished because having my heart pounding away is really uncomfortable and kind of scary. 

On the very good news side of things, tissue testing of my tumor showed a somatic BRCA mutation!!!!!  My germline testing had been negative and I knew there was only a 3% chance of there being a somatic mutation, so I wasn't expecting that result, and when my oncologist told me, I was beyond ecstatic. It feels to me to be the best possible scenario. My kids don't have to worry about a risk of inheriting BRCA and I get the benefit of having cancer cells that are more susceptible to treatment. 

I was initially staged at 3C but am now considered 4B because there was a nodule IN my spleen. So everything still remains to be seen. 

I think that one of THE hardest parts of this has been living with so much ongoing uncertainty - is chemo going to work? What will happen during surgery? Will they get it all? Are there still rogue cancer cells floating around in my blood stream? Will this phase of chemo mop them all up? Or not?
Along with the biggest uncertainty - the future. When I was diagnosed and looked at the outcome stats I thought that this was it. My life was over. But treatment so far has gone really well. And now the great BRCA news. Raising the possibility that I might be one of the incredibly, incredibly lucky people that get stage 4 ovarian cancer and go into "durable remission" aka "cure". That this is still a possibility is something I didn't think would be possible. I find myself not knowing how to feel. I'm doing some tentative shorter term dreaming and planning - like taking a trip to see two of my kids this summer, and going to Mexico this winter - but I don't allow myself to think beyond that. 

Someone, maybe you, on one of these discussion threads, talked about it as living with a chronic illness, and I found this to be a very helpful perspective. If it does come back, it will be treated, and I will go on for a while, and it will come back again and it will be treated, until eventually treatments stop working, but that will be a whole process and will take time, meaning that I will HAVE time, some time at least, and that takes some of the sense of urgency and the fear away. It's not an all or nothing thing.

I'm just going to live as best I can with whatever life I have. 

And I guess that's the one of the teachings from this. 

And you, @Strongwoman, how are you doing?

@Petra
  You are BANG on!  The worst part of this is the doubt we all have niggling in the back of our head's about the outcomes. The future and what it looks like for any single one of us is an unknown but if we were healthy do we truly know our future and what it will look like?  There is always something that can throw us off of our desired path and interrupt our plans.  In saying that, I understand and I get it.  It is another 'layer' added into the physical symptoms we go through as well as the emotional and mental.  Bottom line, it is hard.
  I remember them (Oncologists and nurses) stating that it is more difficult in the recovery phase of things the more chemo one gets. Equals not as easy to bounce back and more side effects.  This does not comfort you or minimize your side effects but hopefully will validate that you are not alone in that area.  It is sadly a very real and can be debilitating to oneself at times. The fatigue part is especially hard because our head's want to do things but our bodies deceive us and won't let us.  I feel that sometimes it is for our own good but really we do so want it to work the way we want it to at times! So frustrating! 
  I bet the pericarditis is scary and difficult to deal with. It sounds painful. Is it?  I would also like for you to have your symptoms alleviated once you finish with the drug and hopefully it will be quickly but may be gradual. ER visits are never fun and do take up a lot of time. Sometimes they can be highly entertaining if you are able to find some of the humour of the antics that go on there at times. 
  You are correct that with HGSC there are many options and treatment variations that can be done like living with a chronic disease of any sort.  Yes, the stats when you look at them are frightening, When you look at LGSC it appears that it is more favourable in some regards because of slow growing, outcomes etc but in reality once we recur we have Letrozole and the new drug out Trametinib. Letrozole has less side effects and most that have tried Trametinib have gone off of it due to side effects and my most recent appt with a Radialogist/Oncoligist stated that the Oncologist that prescribed it to me determined I had a toxicity to it when I took it.  Good to know eh?  I always act not surprised and it is amazing what info you can find out from other health professionals about your condition.  Apologies, I digressed. Should either of those not work for us LGSC gals, there are no more options, It does not respond to chemo and unless a nodule is large enought to radiate to reduce symptoms, it is off the table as well.  
 The teachings from this have and are vast from living with it.  I have learned more patience, still learning to ask for help (I suck at this but am working on it), advocating for oneself, educating oneself and what I truly mean when I say I want to 'live' or 'enjoy life'. I, for one, have learned who was actually really a friend and who was not and my gosh is some of that surprising!  I had someone contact me and state "took me so long to reply because I didn't know what to say and didn't want to say the wrong thing."  I don't believe there is wrong thing to say.  One inquires about someone's state, that person replies when they can or are ready, repeat and rinse. What is worse is having those that 'ghost' you because they can't cope.  It leaves one feeling even more isolated and removed from the normality's of one's life pre-diagnosis.  And....it GD well hurts us to the bitter core. If they only knew what their silence and 'ghosting' do to us, perhaps they might be ashamed of themselves.  One of my other friend's was upset when they found out how things are going for me and where they are headed.  I stated to them that it is a grieving process and we start now and grieve as group and support each other through it all. I truly believe it will help those left behind in the end.  Plus I feel it helps "ME".  My Mom and Dad came down on Thursday and brought pictures for me so I can put together my photo albums that I am doing for them.  It was awesome looking back at some of the pics and bringing back memories.  Laughing at some of the things and reminiscing.  Those are the good parts of this and brings us all closer as well. 
   As for me?  Well, I saw a Radiologist/Oncologist on Thursday.  I had assumed that it was going to be a conversation the Oncologist had with them to verify whether radiation was an option for me or not so we knew definitively. I was surprised when I was informed of this appt but I went.  It was a lot of waiting.  Suffice it to say, it is off the table like we (Oncologist/Palliative and myself) thought it was. Too many areas, too small to radiate safely.  They were more concerned about my kidneys and tried to chastise me on my decision I made on not having a nephrostomy. They were shocked to hear I had declined what the Urologist had suggested and questioned me as to why.  I simply stated it was quality versus quantity. Then.....the topper was "what are you going to do when you go into renal failure?"  HA!  I informed them that is why I have a team, that we discuss it at every appt and we monitor my bloodwork and symptoms accordingly. That is up to my TEAM to tell me when we are reaching a point that it is a MUST not a let me think on that.  They were quite taken aback. I would be very curious to see what they wrote in their notes!  Too funny actually.  
They were concerned about some pain I was having at the appt and was going to inform my team about it. I had indicated they know about it already and nothing has been done.  Bottom line, concerned that my ventral (incisional) hernia may be becoming strangulated.  I asked about what symptoms would be present to cause me to go to Emerg. I have none of them and I feel it was more gas related and my wonderful GI system that is quite sluggish now.  So, all in all, I am okay and accepting of where things are at.  
  Well, gal, I must go now and check on dinner as my male 'sharks' (as I like to call them) are circling when it is getting close to feeding time.  They are so predictable!  
  You have yourself a good evening and do keep us updated on your status.  I will walk along beside you on your journey for as long as I can.
Take care! 

Hi @Strongwoman

Thank you for your detailed reply.

I'm glad that you have a team that you can trust and rely on. I think that makes all the difference when you're dealing with such challenging symptoms and decisions. 

In my relatively short time so far with cancer symptoms and chemo and other treatment meds, one of the most difficult aspects has been this weird experience of having a body that suddenly starts having all sorts of new symptoms, and not knowing what they mean and whether they are of concern or not, and I can imagine that for where you are this also comes with a lot of other unknowns. 

You mentioned pain that might have been bowel related pain. I have had so many instances of pain in my abdomen that I couldn't place and that later turned out to be gas. Personally, I've found the bowel changes one of the worst aspects of this condition, and I totally relate to the challenges of a (for me, newly) sluggish GI system that needs to be coaxed along. And gas pain in an inflamed GI tract is one of the most awful pains I have every experienced, so if that's your experience sometimes these days, I hope it's not too often. When I was in the hospital post surgery, the IV morphine pump made the incision and abdominal pain very easy to handle, but when the gas pain started up, the morphine did nothing for it. I was shocked at how excruciating it was. 

You sound like someone who has taken a very active and empowered stance when it comes to your diagnosis and the decision making around it. I think that is so wise. Nobody is going to care more about our situations than we do, so it is in our best interests to advocate for ourselves, and if necessary (as in your situation with the radiologist) stand up for our decisions in the face of sometimes shockingly ill-informed and/or insensitive opinions. I was aghast when I read how that radiologist spoke to you, and how they questioned your decision making. How dare they!!!! They're not in your situation and have absolutely no right to question you on the choices that you make re: quality and quantity of time left. 
Sounds like you were able to put them in their place, but that you were put in that position at all makes me angry on your behalf.

You are an inspiration to me and I am sure to many in the way that you are approaching things. Not that you need to carry that as a burden, and obviously feel free to vent and have all the feelings. Just know that your words mean a lot. 

I hope you had a lovely dinner with your fam :smile:

Hi Ladies, I was on hoping someone has a bit more info on somatic tumour. We had thought my mom who had 75 with stage 4 cancer's genetic testing showed BRCA2 genetic mutation but we found out that the test was just done on the tumor and not a germline. We've been waiting months to hear back about a germline test and no idea when that will happen. We are in Ontario. I wanted to get tested but until we know for sure they don't won't offer testing to me until they know if my mom carries the mutation in her blood for a hereditary risk, or if it's just the tumor. She's now on that parb inhibtor that starts with an O. Is that parb inhibitor better suited for somatic tumor brca? If you had both germline and tumor tested how long did it take for both results for you? 

Hi @maryp,

I can give you my experience with this.

I have stage 4 HGSOC, was diagnosed in late October 2022. In my case, blood sample (germ line) BRCA testing was done at the time of diagnosis - it took about a month to get results - and it came back negative. I have four adult children, two of them daughters, so I had mixed feelings about the result - on the one hand disappointed, because I knew that a BRCA mutation would improve my prognosis. and on the other hand, relieved that I would not be passing the mutation and the increased risk of cancer to my children. 
. 
Tissue testing was done at the time of surgery (January) -  it also took about a month to come back - and it came back positive for a somatic BRCA1 mutation. I am currently receiving Bevacizumab (trade name Avastin)  along with the usual carboplatin/paclitaxel doublet for the 6 post-surgery chemo rounds, and will be getting Avastin and Olapararib (trade name Lymparza) for the maintenance phase of treatment.

Olaparib is the parp inhibitor that has shown greatest efficacy for patients with both BRCA 1 and 2 mutations, regardless of whether they are germline or somatic mutations. Clinical trials using Olaparib for maintenance treatment have shown significant improvements in progression free survival times (PFS) compared to patients with BRCA mutations that receive a placebo, as well as increased outcome survival times (OS). 

The way I see it, it was the best possible outcome in terms of BRCA.
I felt exceedingly lucky to be in the very low percentage of patients with ovarian cancer to have a somatic BRCA mutation (in the order of 3-5%). And very happy to not be passing a deleterious mutation on to my kids. I get the benefit of the BRCA sensitivity to treatment and my kids don't have to have BRCA in their DNA.

I can't speak to the testing situation in Ontario, as I am in Manitoba.

Not only was I offered the the blood test and the tissue test, I have also been referred to genetic counseling to help me to understand the results. At the time of the counseling, they will review my family history of cancer and will likely offer a genetic screening panel and further consultation once those results are in. It's going to take a while to move up the queue for the genetics consult, but I'm grateful for it having been offered. 

To the topic of germline testing: From my reading, and in discussion with my very knowledgeable oncologist, it is very unlikely for a person with a somatic BRCA mutation to also have a germline mutation. 

That being said, I can completely understand your desire to find out whether that is true in your mom's case. If I were you, I would be wanting to know for certain about that as well. And I'm surprised that the blood test wasn't done, as it seems to me to be standard of care these days for advanced ovarian cancer, given that the percentage of patients with BRCA (or other HRD mutations) is quite high, and given that treatment decisions would be affected by that information.

However, now that they have the somatic tissue results for your mom, the oncologists would not be incentivized, from a medical or treatment perspective to do the blood testing on your mom, as the results would not affect their treatment decisions. She would be getting Olaparib regardless of whether it was germline or somatic.  

The blood test results would really only affect you and other family members. 

There are labs that you can pay to do genetic testing - something to consider if it that is an option for you financially, and if you can't get the province to pay for testing on your mom. 

I don't have any links, but if you search genetic testing Ontario in google you will find private lab options.

I hope that info was helpful, please feel free to ask questions if I missed anything.

I hope treatment is going well for your mom. How is she faring?

Petra

Hi Petra. Thank you for sharing your story and info. It's a bit confusing for me with regards to what one clinic is saying vs mount sinai. At the clinic there is a note stating my mom is positive both somatic and germline but the genetic people at mount sinai who have the test results say otherwise, but when i scroll through the test I see that there was a blood test done as well and it says positive, so now i'm left wondering if those who work at the hospital are reading results correctly. I mean, I have no idea what to believe. It's just a roller coaster of emotions because I thought maybe we don't have to worry about hereditary stuff but now we likely do. Le sigh. :)  

@maryp
That sounds both confusing and frustrating, and like you're going to have to keep digging and pushing to get those different messages reconciled. 
Hang in there, and keep advocating for yourself. If you keep at it, you will get the answers you need and hopefully the testing for yourself and other family members if your mom does have a germline mutation.

So I got an answer. My mom does have the BRCA2 germline and somatic tumor. Combo deal. I have the bloodwork up form now and will get my blood done tomorrow and I will get a follow up from the hospital in 3 weeks. If i have it I'll then take out my ovaries and tubes. I'm perimenopausal. At least it's a piece of puzzle that is answered, sort of. I wish all people with ovaries could get tested, so we can help to prevent this cancer from taking root in our bodies. 

@maryp
Thanks for the update. 
I'm glad you're going to get your results soon. Fingers crossed it turns out that you're negative for BRCA, but if it does come back positive, it's good that you have the option to have the surgery. 
Agreed on the wish that everyone with ovaries could be tested. 
Maybe some day...

@babs272
  I know you were not able to join the chat yesterday. Thought I would touch base and see how you are doing the day after treatment. If you would like to share your update, I would be happy to read it and learn to see where you are at and how it is going for you.
  Take care

Hi strongwoman, I am doing good. Had my doxil and avastin yesterday with ice packs to help with the hand and foot syndrome and the pain. It helps alot. I feel so much better, no more laying in bed for days after treatment like I was when I was on carbo/taxol. That was brutal. I have be'en on chemo since end of Feb. 
My garden is growing well. Eating zuchinni, cukes, and beans this week. Lots of tomatoes coming. Just have to ripen .
Ultra sound went good on my thyroid. They were going to do a biopsy again but since there was no change , we decided to wait a few more months. I had it done in Dec and it was unclusive, so why do it again when it may come back the same.
We have 2 grandkids over night, almost 12 and almost 9 yrs old. They keep me active. Might go for a walk before it gets too hot.Temp. to get to 29/30 today. We have had more hot weather these past summers than rain, for BC and alot of forest fires .
I hope you are doing well . Barb

@babs272
  So glad to hear you are bouncing back better than you were after treatment. Sounds like your regime for the hand/foot/mouth is helping as well.
  Sounds like your garden has been bountiful. That is wonderful. I go to a market that is mainly Mennonite and buy my produce for the summer. We had our first basket of early cucumbers last week.
  So wonderful you get time with the grandkids again.  I am.spending time with my youngest son today (18). He is currently getting his haircut. We think we are going to make pizzas for dinner together.
We are off to buy my elderly Aunt some flowers after this. She was involved in some sort of road rage incident yesterday and I want to Check on her and bring her spirits up a little.
  Yes  I saw rhe fires were burning again out your way. I do hope you stay safe from.them and the smoke as well.
  Enjoy those grandkids and have fun

Chat soon

Thankyou. The fires are farther away from us bus our concerns is the smoke and air quality. My allergies have started to act up more.  Getting ready for a hot day with the kids today. Feeling pretty good after chemo. I am not complaining. Enjoy your day.