I have posted on here before but I’m having trouble navigating the site and can’t find my posts,, so I apologise if I am repeating myself.
I have been diagnosed with stage 4 HG ovarian/ peritoneal cancer (they aren’t able to say which). Original scan revealed cysts on one ovary and the other ovary couldn’t be visualised. I had abdominal fluid , omental caking ,enlarged lymph nodes and pleural effusion. They couldn’t find a mass.
I have had 4 four rounds of carbo/taxol , three of them with Avastin. They omitted the Avastin for the 4th round in case they were able to offer interval debulking.
I had another scan after the third round and had the results a few days ago. I had many questions ready anticipating any outcome. However I wasn’t prepared for what I was told, and having come away, am very confused. Basically the Oncologist said that I was responding well to treatment, the fluid had gone and my CA125 had reduced from 11000 to 6000. They weren’t however going to operate as I had mesenteric (I’m assuming tumour). MDT weren’t confident in being able to remove it all, so have decided to complete the 6 rounds of chemo with another scan after round 5. I was also told I was HRD positive and had self mutated BRACA1 ( so not a risk thankfully to my daughter.) I am eligible for maintenance drugs which is good news.
I took the positives from the meeting but am now having negative thoughts. Why wasn’t this mesenteric spotted before? Where is the primary?… they still don’t know, and have said that it “might” have come from the ovary? I have asked for a copy of my notes, so that I can try and make sense of everything. They said they will be sending a copy of the clinic letter in due course. As I’m writing this, I am getting anxious again. Has anybody else had a similar experience and can you throw any light on what it all means?
Thank you.
Bev
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Beaver54
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Morning, I completely get how you are feeling, thoughts swirl round in your head and it is so difficult to understand all the terminology. I too am stage 4a with the cancer having spread to my peritoneum plus pleural effusion and ascites. I had 6 rounds of chemo, before surgery, was scanned after 3 and the chemo dealt with the ascites and the effusion and shrank the tumours making the surgery more feasible.
Do you have a Specialist Nurse you can contact and speak to. They are very good and will do their best to explain. Big hug 🤗
Thank you for your reply and advice, which I will take tomorrow and call the nurse. I just feel so stupid but. I think I was so thrown off balance by the new information that I couldn’t take it all in.
I’m so sorry that you are going through this too. How are you doing now? Did you achieve NED. I so hope you are well.
Hi, no, I’m not NED. I was on Niraparib for just under a year but my last scan showed further spread, it’s now in my liver, so I’m back on chemo. It’s a real roller coaster but all the way through I can honestly say that my oncology team, doctors and nurses are brilliant and I am sure yours will be. It’s just such a complicated world with a whole language we don’t understand. When I don’t understand the doctor, because what he says is a blur, I call the nurse. It’s scary but it’s so important to stay positive as well. I was diagnosed 4a in Aug 2021 and right now I feel really well (apart from the few days after chemo 🤪). You will get lots of love and support on here. I would also call Ovacome. Their helpline is great and they are very kind and have lots of knowledge and advice. Sending another big hug 🥰🥰
Hi. I haven’t been in your situation but I know I never take in what my oncologist says, especially if it’s bad news. Usually my husband is there and he remembers everything. The mesentery is part of the peritoneum but it may be really inaccessible. Hopefully the chemo will shrink it enough for surgery. I also have a somatic BRCA mutation though mine is one. It apparently helped the Olaparib to work well for me. I took it after recurrence and it got rid of remaining cancer and has kept me ned for three and half years.
Good idea to speak to your specialist nurse, as I'm sure she'll be able to help explain things. It might also be worth seeking a second opinion from a major cancer centre (such as the Royal Marsden in London, Christie in Manchester, QE in Birmingham, or a university hospital near where you live. Sending hugs!
Thank you for your reply. My oncologist has suggested that after my next scan if things remain the same, I should seek a second opinion with Birmingham. Sounds like she thinks I will need to. Shrewsbury, where I am being treated, have already shared with Stoke, which is where I will be operated on and they agree so far. xx
I have Primary peritoneal cancer which has recurred this year after treatment in 2021. I was going to have surgery for a tumour on my kidney but am having chemo instead because a. PETscan has shown tiny cancerous particles in the mesentery, which wraps around and contains the blood supply to the kidneys. Unless they can remove all the cancer the risks of surgery outweigh the benefits and they cannot guarantee to remove microscopic evidence of disease. It sounds as though you may ha e something similar. Ask your nurse or oncologist for help in understanding what is going on. Best wishes
Hi, thanks for your reply. It does sound very similar. Mine is apparently outside the bowel, and I remember now her saying something about blood supply.
I think I’m definitely going to have to check it out with the nurse tomorrow x
Im sorry, I posted my reply before saying how sorry I am for your recurrence. Thank you for taking the time , to help me with my worries, when you have your own bad news to deal with.
Is there still a chance you can have surgery if the chemo does it’s job? Sending positive thoughts and hugs 🤗 xx
Thanks for your kind thoughts. I do not have other than a wild card mutation so was not expecting much from the Niraparib maintenance treatment. I have a large hernia from ultraradical surgery so further operations are problematic for me in any case. Although received opinion used to be that outcomes were better from surgery than just chemo, other recent studies suggest otherwise so I am optimistic about the chemo, which worked well for me last time...and may well be all you need too
Thank you. That sounds optimistic. You sound optimistic, which is just great. I’m amazed at how strong everyone is on this group. I’ve certainly got more strength than I would have done without it. So grateful x
Hello Bev. I’m so sorry that you are going through this. I was diagnosed with stage 4 peritoneal cancer in January 2022 and a biopsy from a metastatic lymph node near my collarbone revealed that I had HGSOC. I was completely shocked and couldn’t understand how that could be when I had had a total abdominal hysterectomy and removal of both ovaries and fallopian tubes (not cancer related) in 2016. I’ve since learned that primary peritoneal cancer originates in either the ovaries or fallopian tube and that microscopic cells can be shed years before and may be benign but some time later become cancerous or may have been cancerous already. So it’s called primary peritoneal cancer but treated as ovarian. I had 5 cycles of chemo, Avastin added in part way through these then CT scan anticipating debulking surgery. Unfortunately like you, the results showed spread to the mesentery and I was told that this could not be removed as the main function of it was supplying blood to the intestines, I was so disappointed but discovered on this forum a renowned surgeon - Professor C Fotopolou (you can Google/YouTube her) and sought a second opinion. She was so easy to talk to and I felt completely at ease and in safe hands.In September 2022 she attempted surgery to remove tumours on the peritoneum but was not able to do so because when she saw it during surgery she noted cancerous’seeds’ over vast areas of it. I tell you this because despite this I recovered well from the surgery, had further cycles of chemo and then in November 2022 commenced on Olaparib and continued with Avastin. To date my scans show no progression and stable disease. She probably wouldn’t be able to remove the mesenteric cancer but may well be able to do debulking surgery if the team at your hospital can’t offer you this. Even though my surgery was not successful I still feel it was the right decision. I’m hoping that you’re able to get more clarity from your CNS/oncologist too.Sending good wishes
It must have been such a shock for you receiving that diagnosis under your circumstances. It was a shock to me when I was diagnosed, although my ovaries were left in situ during my hysterectomy, also not cancer related. Im still struggling with it, as around every corner there is another shock waiting. I am experiencing a roller coaster of emotions . Feeling positive one moment and then negative the next. It does help though being a part of this forum . I have gained more insight from people who have been or who are currently going through it. Thank you for sharing your story, and I hope the disease remains stable for a long time to come.
I will definitely enquire about Dr Fotopolou following on from my next scan.
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