Never thought that I would be writing this post

[Chanterelle]

After over 6 years of being in remission, I was feeling bloated after eating and ended up seeing my GP and then my oncologist later this month. My oncologist sent me for a CT scan and I am supposed to discuss the results on Tuesday.

In the meantime today, I went to the hospital because I felt constipated and my husband thought that I had a blockage. The doctor there examined me and I explained my situation. I wanted to wait for the oncologist meeting but she did an quick ultrasound on my stomach and found some ascites. When I went to the oncologist, he could not feel any on Friday. At that point, I was so much in shock that she did end up looking at the preliminary report of the CT scan and it said thickening of the peritoneum with ascites. The full report was not available so don't know what else it will say but I am beyond freaked out about this.

I can't sleep, eat and I am completely frozen. I am so scared that I feel so numb. I don't like what I read online as well. I am BRAC2 and I know that I was told that there are a lot of options now. I did extremely well with the carboplaxin but what does it mean that I have thickening of the peritoneum. Is this a common place for ovarian cancer to come back. For those who have had recurrences, does anyone know anything about this. I can't stand to wait until Tuesday to find out more. Please help me tonight.

[Lyndy]

Hello Chanterelle, yes OC can come back typically in the abdomen, so your thickening fits with that.

Recurrence is gut wrenching but you will come through and you know what to expect with chemo so treatment is less of a leap in the dark. I am BRCA 1 and got NED again after my second line on carbo only.

Take a deep breath, you can do this xx

[Chanterelle in reply to Lyndy]

Thank you so much for answering my question. I am still up at this time of the morning (it is 3:43AM in Canada). I did very well with chemo and I am BRAC2. I was told that for people with BRAC that there are more option as well and PARP inhibitors works especially well for us. Just the thought of doing this again after over 6 years, is absolutely devastating. I am very grateful that I saw my daughter graduate from University, get married, buy a house and now she is expecting a baby to be born in early February. I just want to hold that child in my arms. Thanks again for your support. It means a great deal to me. I am just trying to hold it together until I meet with my oncologist on Tuesday. I was only going to the emergency for my constipation and didn't expect to have to face that at the hospital. There was no one on staff that could explain things to me. I have extreme PTSD from when I was just diagnosed and how it was told to me the first time. I was very, very sick at the time as well so memories are floading back now. The thing is that I actually have an appetite this time, no nausea, no fatigue at all. The bloating started at the top part of my stomach and it was rather gradual. My GP and my oncologist didn't even feel any ascites or anything. It's just after I eat, I get a back ache and my stomach sticks out. I also constipated as well when I was having nice bowell movements not that long ago. Taking laxatives gives me very bad cramps but the ER doctor did not do anything about that and just told me to take what I tried before. To be fair, I think that I am afraid to eat because it makes my stomach stick out more and is uncomfortable. Thanks again for your kind message.

[Lyndy in reply to Chanterelle]

You are right about the range of treatments for BRCA+ as we are probably the most studied group ever! Don’t despair, you are in the care of your team and they will be ready for this.

I would urge you to make sure they explain everything to you and also to mention your PTSD. I found that staff were much more understanding when they knew about my anxiety xx

[SopSinger in reply to Chanterelle]

Just to answer one of your questions, not all laxatives cause cramps. The stimulant ones are the worst (senna based) but Movicol (Miralax? not sure which brand name is used in Canada) should give you some relief without cramping.

[Chanterelle in reply to SopSinger]

Thank you for your reply. Yes I found out that that there are laxatives that do not cause cramps. I used Milk of Magnesium yesterday and it get my bowells moving. The only thing is that it is cleans you out completely and turns my stools blueish green. I just cannot take senna based ones because they cause the worst cramps ever for me right now and they don't seem to work as well.

[SopSinger in reply to Chanterelle]

Milk of mag should be fine. And the cure for strange looking stools is not to look at them!

[Lizz49]

Hi Chanterelle,

I’m so sorry you’re going through this after 6 years and I can feel your pain and worry in the words you write. The waiting is extremely hard but hopefully by Tuesday you’ll get more definitive news and a plan put in place. It still might not be a recurrence but if it is, and I know how gutting that is, you will get through it with a good team behind you and you’ll get back to NED again. Being BRAC status means you’ll likely respond better to some treatments and there are so many more available to OC ladies now.

I did recur at the end of last year after 5 years and it is pretty devastating, I could hardly believe it, but happy to say after surgery in March I’m now NED again and back to where I was. No further treatment as I’m Low Grade. I’m back at work, socialising and feel active again despite some aches and pains. You will get through this, and we are all behind you.

Sending hugs and do keep us posted,

Liz Xx 💖

[Chanterelle in reply to Lizz49]

Thank you so much for your kind words and encouragement. I knew inside of me that I was having a recurrence but it didn't feel the same way as when I was first diagnosed. Just know my body so well so knew that it was happening.

I am also very sorry to hear that you recurred after 5 years. I know how desvastating that must have been for you. So glad that you are now NED again.

You are so kind and your words soothe me on a Saturday morning in Canada where my husband and I are unable to sleep. I think that having a plan in place after talking to my oncologist will be better. I am a very anxious person by nature and waiting is extremely hard for me. There is a sadness that runs so deep inside of me right now.

[delia2]

Hi Chanterelle. I can imagine your anxiety. I think recurrence can be psychologically more difficult than initial diagnosis. Is there a counselor you can see or talk to, maybe at your cancer center? I just want to add that I recurred after eight months, had chemo, went on the PARP inhibitor Olaparib for three years and am still in remission six months later, though I do worry. Hang in there til you know for sure and have a plan.

[Pianoplayer731021]

Hi chanterelle, just keeping you in my thoughts and prayers. This can be an anxious time for you. Just to know that you have all of us ladies on here supporting you. Keep thinking positive and you will get through this. Deep breaths, Donna 👍🥰

[Chanterelle in reply to Pianoplayer731021]

Thank you so much.

[Motiva]

Oh Chanterelle what an awful shock after being stable for so long. The local spread to the peritoneum may be small volumes of tumour. Since your last treatment there are amazing new drugs available for HRD abnormalities like your BRCA2 one. Can you speak to the Ovacome or Target Ovarian Cancer specialist support nurse on Monday? Tuesday will seem a long way off.

🤗

F x

[Chanterelle in reply to Motiva]

Thank you so much your kind and helpful response. I am located in Canada but joined this group because I find everyone so kind. I just got the preliminary reading of the CT scan on Friday because the entire report was not available yet and I believe an expert radiologist has to make a complete report for the oncologist. When I went to the ER on Friday to get my bowells unblocked, the ER doctor has promised me that I would be able to speak to someone from gyno that was on call at the hospital if I was ready to get the results while I was there but no one was available and they were interns on call who could not help me. I really only wanted to find with my oncologist so that I can get my questions answered but I knew full well that by the swelling in my stomach that I have a recurrence. I do have access to an oncology nurse who has been very helpful and she is the one who got me the appointment on Tuesday. Yes, it does seem far off but we are now Sunday. I have my husband who is being wonderful to me. I have told a few people including my older sister and she acted very strange with me. I have to be careful who I talk to because my overall mental health is quite poor and any word from someone can be interpreted by me in a way that is perhaps very negative. My other sister is much more loving and kind towards me. I just don't want to burden her with my fears. The thing is that I am really angry as well. An anger that I thought that I had tucked away after all these years but that has now resurfaced.

[KimLJ]

Hi Chanterelle

So sorry your about to go through this again. I was 5 years NED and this May was advised I had a recurrence. My mind set the first time and this time is get rid of it. Waiting for appointments and decisions is a nightmare I know, but hold on to the fact we did well the first time let’s do it again!!! I read somewhere that we have a 85% chance of recurrence so to me this wasn’t a terrible shock. Your in the system decisions will be made soon and then you kick its **** again. I hope all goes well.

Love Kim xx

[Chanterelle in reply to KimLJ]

Thank you very much for your kind words. I am in Canada but we are not quite organized the same way as in the UK. I am meeting with my oncologist on Tuesday. We are now Sunday morning but it feels so far away. I am also quite uncomfortable as well as my stomach has swelled up even more. I have pains in my back from the extra weight in front and I am a slight person to start. I am terrified because it started off as being just a bit and now it seems to get a bit worse especially after I drink or eat. I am not nauseous at this point like when I was first diagnosed or even fatigued (I was so sick then). I actually crave food and would eat an entire large plate if I could but it seems to push my stomach forward even more. Right now, it is like the top of stomach doesn't have enough room to expand. I know that I have ascites but it doesn't look like it did when I was first diagnosed 6 years ago. I feel like my small frame cannot take the extra weight in the front and I have problems walking straight. It was so much worse 6 years ago and I was very weak, could not eat and had absolutely no energy. I was also vomitting. I can't seem to get into a comfortable position when I sleep as well.

I thank you for your kind wishes and hope that everything goes extremely for the both of us.

[KimLJ]

it must be awful for you. I hope they are quick. Let me know how you get on. God Bless xx

[Chanterelle in reply to KimLJ]

Thank you for your kind words. I appreciate it very much.