Disappointing Consultation

[rosebine]

Just had consult after 6 cycles carbo/caelyx (this is second line) not much shrinkage. CA number was 40 before 5th chemo and has gone up to 57!

I made the mistake of asking to see my CT scan, never seen one before and I was horrified at the size of the tumours, knew the measurements but not actually visualised before. Niraparib being proposed now but Consultant seemed a bit non commital about it. He is going to ask the Surgeons to review scan again to see if they would consider surgery, ruled out before. On the one hand I would b e scared of surgery and particularly having a stoma, but Im scared of trusting Niraparib! Hobsons choice really, as it will all come down to the same thing in the end, but Im also terrified of that!

Got to wait for decision now, then make my decision if they will operate.

[Gemimablackvelvet]

Hello again Rosebine, I wish I knew what to say. I mistakenly thought you were on Taxol when I answered yesterday. Now it seems you’re just finishing Carbo/Caelyx. I mentioned it reduced mine by 2/3rds could you not be kept on this chemo a little longer. I may be totally wrong. By the time I’d tried and tested the Parps but my tumours had started to grow again in a 5 month period. Taxol as I said is lowering my CA 125 but I haven’t had a scan. I felt Taxol was a last resort but as you said it’s Hobson’s choice. It’s quite a good move if they’re even considering surgery this time. I’ve repeatedly asked for second surgery and repeatedly been refused. A stoma is a dreadful thought but can be lived with eventually. That may never happen. I feel for you and hope the right treatment is found for you. Lots of love Angela x

[Irisisme]

Hello Rosebine,I’m so sad for you and the problems you’ve had on your OC journey. I just wonder if you’ve ever thought that maybe your health professionals are not doing all that they could for you.

Who is deciding whether or not surgery is an option for you? Your Clinical Oncologist is asking which specialist surgeon? Should you be given the surgical option it is a big decision to make and you have to check out your surgical team to be confident they are up to the job!

I started out in late 2016 being told I was inoperable bordering on stage 4, but for me things got better. Firstly, the fluid from my chest proved negative for cancer cells. Then I had an NHS surgeon willing to operate with a liver specialist standing by. Then they planned to remove my spleen but didn’t have to. I even avoided a stoma because there was too much seeding along the whole of my bowel. My surgeon worked for nearly 7 hours and was certain he’d removed everything large than 2mm - and the main tumour was melon sized. This list of lesions and bits removed went into 3 pages!

Are you confident you have access to a good surgeon via your clinical oncologist?

I was lucky in that I had Paclitaxel and Carboplatin before surgery and afterwards, and it did reduce what was left - and Avastin helped further. I’ve had 2nd line Paclitaxel due to the cancer along my bowel but my cancer is not resistant so I consider myself very lucky.

Given that you are platinum-resistant I do hope that you are found suitable for surgery, but whether you take that option if it’s offered needs you to weigh up the pros and cons. Many on this site have coped with a stoma and will tell you it’s ok, but surgery doesn’t come with a guarantee so only you can decide for you. I know I’m very grateful for mine!

I can only wish you Good Luck on your journey and wish for you that it is long and happy.

Sending hugs🤗,

Iris x

[fair-rosamund in reply to Irisisme]

I've had a permanent ileostomy since bowel perforation and peritonitis 5.5 years ago. I was sceptical about those with ulcerative colitis who said a stoma better quality of life than active disease, but it is. Now diagnosed stage 3 OC and surgery last resort due to adhesions from previous surgery, but doing well on niraparib after chemo and feeling fine. I thought a stoma would be end of the world- but don't worry and the stoma nurses are fantastic.

[rosebine in reply to Irisisme]

Im not platinum resistant yet I dont think. Having asked about surgery, on the way home I realised that with the current situation where surgeries are being cancelled I would not be in the priority group, as there will be people who will be considered to have a better survival chance than me. Also as I live alone I wonder how I would manage, no relatives or friends locally, with recovery. Well if its a No the decision is made for me.Dont know who surgeon would be or what reputation the hospital has for cancer surgery

[Irisisme in reply to rosebine]

Sorry for the delay in replying, Rosebine; and sorry for the assumption about you being platinum resistant. I assumed that because of the chemo you are on.

I see that delia 2 has suggested that maybe you should seek a second opinion, and my thoughts are along the same lines!

Your surgery should depend on how successful it could be, and that often depends upon the skill of the surgeon. Please check this out, you need to know whether your health professionals are offering the best available - your life is worth as much as the next person’s.

You say you are worried about coping on your own. Their should be a care plan put in place for you for after the surgery. If you don’t think your health professionals can do this (and in these times staff are short) but your local Hospice or McMillan nurse might help.

Please consider self referring yourself to your local Hospice, they are not just their for ‘end of life’ but for people who have a permanent condition likely to shorten their life - so you would qualify. They will at least talk to you.

Good Luck Rosebine, and please don’t give up.

Sending hugs 🤗 🤗

Iris x

[delia2]

Hi. I’m sorry you’re dealing with all this on your own. It seems like surgery would be your best bet if chemo didn’t shrink the tumors a lot. Maybe you should seek a second opinion? Hugs.