Omentum and surgery

[Itsmymum]

Hi, please can I ask for some help and support. My 74yr old Mum has Primary peritoneal cancer with a significant amount in the omentum. She had 3 rounds of carboplatin/ taxol and underwent surgey recently. When they did the surgey they found the omentum couldn’t be removed as the cancer had spread between the omentum and attached to the stomach, small intestine and diaphragm. They said removing the affected areas would result in a colostomy bag and would endanger her life as the surgey would be so radical. They removed her ovaries and Fallopian tubes but neither had any evidence of cancer. We feel confused and let down as we are now left with a Mum recovering from a very invasive operation which to all intents and purpose now seems to have been unnecessary, it also means she has to wait a further 6-8 weeks for the next chemo. No one suggested that this might be the case, that there was a risk it could have spread. The CT scan report said partial response to chemo, no sign of lesions on bowel, stomach, liver, lungs. How much should we have pushed for more information about how reliable the scan results are? Or that perhaps the situation could have been managed differently ie just chemo and no surgey? We have had no consistency in Consultants when attending appointments. They can’t tell us what the future holds and talk about taking one day at a time. We are so unsure of what to expect now. Is the situation as dire as it appears?

[kristinaapril]

Sorry to hear about your mum being unable to have her omentum debulked.

Doctors used the resources available (CT-scans, in rarer cases PET scans) to get an idea of what's going on. However, it is impossible to get a full picture just based on those resources/tests alone. CT scans are finicky - moving during the tests and ascites - can cause distortion; plus not all types of tumors/growths can be detected by a CT scan. In reality, surgeons do not know the full picture until they actually open you up. In the United States, most of this information (pros/cons; what might happen; reliability of scans) is included in the packet given to you prior to surgery - and if you agree to this - you give consent to have this procedure.

Honestly, in my opinion, doctors cannot tell you what the future holds for your mum. They can tell you statistically what is average - but your mum is your own individual. I would advise your mum to focus on relaxing and allowing her body to heal after surgery - and then preparing for chemotherapy in 6 to 8 weeks time.

Wishing you all the best,

Kris x

[Lyndy]

Hi there...really sorry to hear what happened to your Mum. I wonder if you can use the recovery period to get a second opinion if she is up for this...preferably from a specialist centre. There are a few surgeons who seem to work miracles where general surgeons won’t or can’t operate. Equally if she is responding well to chemo they could perhaps add Avastin?

It seems that this surgery is a bit of a crossroads so a thorough review is in order xx

[Alifit]

Hi,

I had a similar experience to your mother - I had my operation and although my omentum was removed, they couldn’t remove a couple of tumours due to their proximity to major blood vessels. They checked all of my bowel and my uterus and associated organs then stitched me back up. There was evidence of what they referred to as ‘seeding’ all around my peritoneum, but the decision was that chemo would deal with the rest of my cancer.

I was surprised that this was the outcome of the op - I expected to have everything removed and maybe even a stoma, but I’m fairly sure that I was warned that this was a possible outcome. I restarted chemo after about 4 weeks then had Avastin added to the mix.

It’s nearly two years since my first chemo, and I’ve been incredibly well during that time; unfortunately my CA125 has now crept back up and this week I have to decide whether to give in gracefully and restart chemo next Monday or see if I can delay it until I’ve had a week in Cornwall with my family.

The surgery is major and invasive, but it gives the medical team a chance to really get a measure of the disease, which scans generally can’t do. Our doctors spend their lives making difficult decisions about unique bodies, using imperfect technology and knowing that they may sometimes not get the responses to treatment they or you would like. I agree that having a second opinion is always an option, but do read the article written by Anna of Ovacome, published on this site which gives you guidance about how to go about getting a second opinion.

I hope you can find the answers you need, ask your team to go over their findings and feelings until you are sure, but in the mean time try to stay positive for your mums sake - if you read the posts on here, you will find some really uplifting stories.

Wishing you all the best, Ali x

[eileen_alberti in reply to Alifit]

If it were me, I'd take that week so I could at least feel I had some control over the craziness, and I wouldn't have to bemoan the possibility of missing something fabulous.

many blessings, Eileen

[Alifit in reply to eileen_alberti]

Hi Eileen

Unfortunately, today I found out that my disease is progressing with a nodule in my lung and rising CA125 - 426 at last count, so I have reluctantly agreed to start chemo this coming Tuesday. If the holiday had been a week sooner I think I would have been happy, but I had to weigh up a number of pros and cons and after half an hour chatting to my lovely bloke, came to the conclusion that they are right. I am experiencing a fair amount of discomfort which I don’t want to get worse. Having the chemo on Tuesday means I have a fighting chance of being reasonably ok for my holiday on 20th and also means that it will be finished sooner. Hey ho!

Best wishes, Ali x

[Kunalj3B]

Really sorry man. My mum has her omentum removed and biopsy report found macroscopic deposits of tumor (Less than 2cm though) on her omentum. CT scan performed 10 days before didn't show any ascite , but while operating, doctor found 400ml ascites. So I guess it was just starting to spread. Doctors are positive. My mum is way younger though,she is only 47 so doctors are positive.

Your mother isn't some number , so don't stress on statistics . Concentrate on next steps and please have a same consultant, don't jump your doctors.

Best luck

[January-2016-UK]

Why don’t you seek a second opinion from a major centre? Even if the advice is the same at least you’ll feel more comfortable that the decision is the right one. I think it is very important to be comfortable with proposed treatment and to have confidence in your mother’s oncologist.

There is a pinned post on this site regarding seeking a second opinion which should help you.

All the best!

[Cropcrop]

Hi, I’m so sorry you find yourself in this position but Kris has totally nailed this.

You can ask to see the same doctor where possible but no doctor, whatever their skill level, can foretell the future for any of us especially when you factor in this god awful disease. Scans are a really useful aide to surgeons but are never 100% accurate and they only truly find out the full extent of what is going on once they get in there and often there are surprises waiting for them. Each and every surgery holds its own difficulty and potential risks, no surgery is ever guaranteed and it seems they did what was possible without further endangering your mum.

None of us knows what the future holds with our without factoring in diseases, each day should be embraced as much as is possible so please don’t get caught up in ‘what ifs’ and potential blaming, concentrate on helping mum recover from her surgery so she can regain her strength in readiness for her chemo. No doctor can fully guess what the future holds for any of us, they can give us estimates based on experience and similar medical cases but none of us are the same, we are all individuals who may react or respond to life’s rich tapestry and the things it throws at us differently.

I send you both big hugs and best possible wishes ❤️Xx Jane

[Itsmymum]

Dear All, thank you all so much for taking the time to listen and to reply. Thank you for your advice about second opinions and about focusing on being positive and on recovery. I am truly grateful for all your words of encouragement. Things don’t feel so bleak after I’ve read all your answers. Mum is a little better today, still sore but she was able to get into a chair with help and sit up for a while. I’m beginning to understand how complex understanding and treating this disease is.

What an incredible support network this group is.

Sam x

[eileen_alberti]

I had surgery 1/3/17 and it was my 6th belly surgery over many years. I'm here to tell you that a 13 in. incision is a hard thing to bear [I was 72] at the time. I had a constant pain at the base of the sternum for 50 days afterward. So don't give up with slow improvement. Hang in there with slow and steady. If you didn't have questions and fears, you'd be unconscious. Do what you feel you have to do so you can check all the boxes. The more info you have, the better you can help your mum. And yourself too.

Then there's eating. Whatever, whenever. The taste changes I experienced were unbelievable. And don't forget to take care of yourself.

Blessings to all, Eileen