No operation offered for stage 3C peritoneum cancer.

I think that you might find the risks outweigh benefits. Only from my experience I hasten to add. When I had debulking operation they couldn’t remove some of the disease as it was on a large blood vessel and. Also on the liver. It might seem a lot of chemo so far but believe me it does help and you may find you respond well. Good luck.

wx

Yes, me!.  Like you, I was fit and healthy: 67 but a marathon runner.  The review post 3 cycles is pretty standard I think and this is what happened to me too  I had been told at diagnosis (stage IV) that it was very unlikely that I would have surgery, given the widespread nature of the growth.  The decision was reviewed after my scan but chemo was considered to be my best option.  I'm mid way between 4th and 5th cycle now (I've had Avastin added from the 2nd cycle).  It seems to be effective too and my markers have fallen significantly (from 1100 just before treatment to 54 after my 3rd cycle).  Like you, maintenance with Avastin is possible (there's nirapabib approved too, I believe) but decisions are taken post scan after the 6th chemo.   

Yes I am in a similar position.  Everything you read seems to suggest that, despite the severity of the cytoreduction procedure and long recovery time, it improves life expectancy.  I have been diagnosed with Stage 3C and have also been discouraged from considering surgery because of multiple areas of my peritoneum affected.  I am in the middle of my first of three chemo cycles and until February had absolutely no idea that there was anything wrong with me.  I am 70 and normally very well and active so am finding it very difficult to adjust.  I also feel that the Covid procedures eg no face-to face metings with my Consultant Oncologist,  may have led him to believe that I am less fit than I am and that that may be influencing his views.  I can do nothing, it seems, until the CT scan results after the third cycle but would really have liked some sort of road map and options appraisal. My Oncologist in our brief telephone conversation (only one so far) has been extremely reluctant to discuss anything other than the chemo programme and simply says that he is not a surgeon so cannot advise.  I do not know where to go for such help and since the Gynae consultant transferred me to Oncology saying I did not have Ovarian Cancer so basically not his area, I do not know how to get this help.  It is further complicated in that my NHS Trust would have to refer me elsewhere for surgery because they do not have the facilites/expertise.  I feel that someone should be taking an overarching view of my treatment and I do not feel that this is happening at the moment.

Hi there - Thank you for the replies above. - I appreciate your reassurance.  PaulaBB: .I am three months further along the line now. I would like to tell you what to expect (from my experience). After the first 3 cycles of chemo, the scan showed that my cancer was too extensive for surgery. I wrote to my oncologist asking numerous questions and asked  them to reconsider surgery.  My oncologist brought my next online consultation forward. She went through my questions one by one explaining everything to me in a way I could understand. It is not about how fit you are or comparing your scan with a previous one as I had thought. A multi-disciplinary team meets (this consists of  3 experienced surgeons, your consultant and chemo/Macmillan nurses/specialists. They make the decision regarding surgery based on the individual patient's best interests on the information on the scan and the radiologist's report. From what I understand, during surgery, interfering with cancer cells/tumours that cannot be removed can actually increase the risk of cancer spreading. Also having surgery means up to 3 months without chemo or immunotherapy before and after the operation (time for cancer to advance significantly further).  I was told that somebody who is fit and healthy (apart from cancer) may actually do better and survive longer than a less healthy person who had had the operation.   I then had 3 more cycles of chemo with Avastin added to the last two cycles (6 cycles of chemo in total). Unfortunately the scan following this treatment also showed that surgery was not possible even though my cancer had shrunk by half. I was given the option to appeal to surgeons at the Marsden.  I chose not to. I trusted the judgement of three experienced surgeons and their expert colleagues. I had another consultation with my oncologist. She carefully explained my treatment plan - another 16 cycles of Avastin immunotherapy initially  (you can have this for up to 3 years). I would have a scan every 4-6 months. If this showed a relapse, more chemo was possible and they also had other drugs in mind. If I had reoccurring pain or ascites I should contact the team immediately so that this treatment would be triggered. I asked the difficult question. Did I have months or years to live? She told me I would definitely be speaking to her this time next year and hopefully well beyond that. New drugs and combinations of drugs are coming out all the time. Take no notice of a prognosis you read on the internet. They are already out of date. I have indigestion/discomfort most days. I take stomach protectors and Gaviscon. My quality of life is good and I count every day as a blessing. I am so fortunate to be here and am enjoying my bonus time! I wish you lots of luck with your treatment xx

my mum has just been diagnosed with Peritoneum cancer yesterday in fact, we have been told the operation isn't an option and she will start the cycles of chemo which include a drip and tablet form, thank you for writing your journey its given me an insight of what to expect. 

I agree with much that you say   And thanks for going through each stage in such detail: it really helps anyone else who may be reading because they may well have similar questions.  I was really interested to see the BBC Hospital documentary (series 7 Episode 2) that featured gynae oncology.  A lady with ovarian cancer had exploratory laparoscopy to see if she was suitable for surgery and you could really appreciate how difficult the decisions can be for the medics involved.   

I am curious as to how your Avastin treatment will extend to 3 years though.  Mine are 3 weeks apart so I figured it might be maybe a year's worth left.  It does have the disadvantage that if you need any surgery you need to have a break of 6 weeks before hand and maybe 3 afterwards for healing.  I'm debating as to whether to have surgery to have a prolapsed bladder repaired.  In any event I have to wait for 6 months beyond a pulmonary embolism that showed up in the scan after the chemo.  So in that time the cancer may have returned though obviously I hope not!!. I'm definitely up for more chemo and then maybe niraparib.

All the best and let's hope we have a lot more days to count our blessings  

All the best to you Laura and your mum.  The chemo can be very effective at reducing the growth and effects of the cancer  My own CA125 levels have dropped to less than 10.  

Like you I wish that someone had an overarching view.  And not even of the cancer treatment really... I really think that has to be the oncologist  but of all the other things that have an impact on your health as a consequence of the cancer or of the side effects of the treatments...or the other aspects of your health and how to manage them interspersed as they are with the cancer treatments.  What shouts out loudly from your post is that you want to be considered as an individual case, which is what we all want.  I think my oncologist does that but I feel guilty that I risk ending  up telling him about the various aches and pains that can happen, just in case they are something sinister/ untoward ....whereas they might well be totally unrelated!   My very patient (Gynae) Cancer Nurse Specialist assumes much of this role bless her: she is a star  

Thanks for replying to me. It is now 12 months later and after chemo I have had 17 cycles of Avastin. You can only have 18 apparently so Avastin will stop in february and then they expect my cancer to progress in a few months. I will then have more chemo. I did have Nirapabib approved too, but funding for that has been stopped. I will have a similar drug.

I was mistaken in the belief that i could take Avastin for up to 3 years. It is only funded for one year.