10 months after my mum was diagnosed with low grade OC, stage 3c, deemed inoperable, gone through 6 cycles Carbo-taxol-bevacizumab with tiny response, still inoperable, further 6 cycles of bevacizumab, stable disease... We asked for a second opinion at a bigger hospital and now she is going through surgery on April 2nd!! This surgeon believes that for her kind of tumor, even if they cannot get rid of all the visible tumor it will have a benefit on her survival.
We are both excited and terrified! Surgeon says they will not know exactly what they are facing until they open up, and that there are many risks and the possibility of removing many organs, part of the bowel, having to make a colostomy... My mum has been so well these months, with no symptoms, stable disease and no possibility of surgery already assumed, that we were not expecting this and can only think on the risks, or leaving her with a worse quality of life, and my fear to loose her has come back.
I guess many of you have already gone through this aggresive procedure, so any experience shared or advice will be really appreciated.
Sorry for the long post and for those dealing with the lack of good news, always ask for a second opinion!!
Best,
Sara.
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This is great news! From my understanding every patients ultimate goal is to have surgery. Many ladies on here have never even qualified. I would stay strong and you are your mom will power through. My mom personally said that the surgery recovery compared to chemo was a walk in the park. I know everyone is different and their body reacts differently. My mom was in the hospital for 5 days following her 7 hour surgery. The beginning was very rough - you have to think you just had majority of your organs moved around. But after 3 weeks she was headed on the road back to normal (before starting chemo). It’s amazing that you are her advocate and went for a second opinion. Wishing you and your mom only the best.
Thank you Lind58! Of course, our goal always has been surgery, and this is why I did not stop searching for other options. It's just that she has been so well so far, I am afraid that something happens to her just because of me being stubborn. But she is determined to do it! And also the surgeon gave us much confidence, she said of course it has many risks but "you know, we do this every day" (got to love her hahaha). I am so glad your mom recovered so well, this gives us a lot of hope!
Your Surgeon always has to give you the grim possibilities ahead of time, but if your mother hasn’t had any invasions inside her bowels, she will probably be fine.
They warned me that a colostomy was a possibility, but for me it was such a distant possibility, they did not even have a gastric surgeon standing by.
Mine is high grade, by the way, much more responsive to Chemo than low grade.
My surgery was half way through my Chemo regimen, so most of the cancer was gone or nearly so, but I had been riddled with it.
In the notes, the surgeon said he had zapped (with a laser) 200 spots on my bowels, but they were ON my bowels not inside.
He rooted around everywhere, taking my omentum and reproductive organs including my uterus, I already did not have a spleen, and he left my appendix.
Having a surgeon root around inside your belly, fingering and zapping your bowels, is very traumatic to your body.
It takes a while for your digestion to work again. Don’t try to rush it. Take all the time you need to recuperate.
The pain relief system after surgery is amazing, do not to worry about that.
This surgeon sounds great. Put your trust in him.
Let your mom rest up in hospital. Eating afterwards is not a good option, with one’s digestion frozen, food has no place to go. Just try to keep your mom hydrated. Bring broth, but only small sips needed.
It took me 7 days in hospital than one more day at home for my digestion to restart, before I could eat again, so this is a good time to get some build up of calories now, before the operation!
My mom's tumor type is supposed to be not very invasive, it's spread all over the peritoneum (plus the ovary), so it touches a big part of the bowels and probably other organs, but it is supposed to be on the surface and not infiltrated, we will see. They will remove the reproductive organs, entire peritoneum and the rest is to be figured through the surgery.
It sounds that recovery is not as hard as it seems! Thank you for all the advices!
Good news about the op. Take it from a ftotal Wimp, hopefully the op wont be as bad as you might imagine, it's down to fear of the unknown, how much pain and discomfort will there be etc. I had a radical hysterectomy (albeit no colostomy) on Thursday, home by Monday. Lots of rest, get your mum to take things easy, be kind to herself and time does heal. Listen to the things not to do, no lifting etc. No point trying and setting yourself back. Hope things go well for your mum. Take care. Kathy xx
Hi Sara. I had that kind of surgery for borderline/low grade OC. Twice, in fact. And I'd do it again any time, if offered, as it's made me feel better afterwards.
But it is a risk of course and nobody else can make the final decision but your mum. Prior to my first surgery, I almost did not sign on the dotted line for fear of waking up with a stoma. In the end, I signed anyway, was spared a stoma and glad I had surgery. Well, after the initial few days during which I felt quite battered, admittedly.
After a bit of layman's research online, it also seems to me that surgery is one of the better treatment options for low grade OC. Then again, every patient and case is different.
Hi Sara, Like Maus I have had 2nd surgery which was more successful than we all thought. My own top class cancer hospital refused to do it so I had the surgery in London. I,like Maus, am a low grader 3b. I also believe surgery is the best option for us low graders as we don't respond particularly well to chemo. Obviously, it is risky and your mum has to make her own decisions. Whatever her decision I wish her the very very best. Please update us. Gwen x
When I had my last surgery, I was warned I was likely to have a colostomy & have my spleen removed. I thought if it happened I would have to learn to live with it, & went ahead with the surgery in the hope of getting rid of the tumours whether I had a stoma or not. I was lucky that I didn't have a stoma or have my spleen removed, although I was in a ward where a couple of ladies were adjusting to living with colostomies. I found the decision about whether to have the surgery or not rather daunting, but felt I had made the right decision. Di
I had a pelvicexenteration in 2007 which involved removal of both bowel and bladder so I am a two bag lady.I have also had womb ,ovaries appendix 1/2 diaphragm and bits of liver removed,five surgeries in all.I hated chemo and have always preferred surgery if it is an option and lucky enough to have the same main consultant over my 18 year journey.Stomas are hard to adjust to and not without ongoing problems but Stoma nurses are very good at advice.
I was diagnosed with Grade 3C Low Grade Serous Adenocarcinoma as well. 11 years ago. Only it wasn't called that then. They hadn't identified yet. From what I understand to date...it is a bit chemo resistant, but slow growing.
After my first debulking and Taxotere/Carbo regimen, I was in remission (NED) for 7 years.
In 2014 it came back. I've been dealing with it on and off since then. Nothing too crazy. I pay attention to the signs and medicate appropriately per my team.
Just a word from my experience: if the taxol proves to cause a lot of nasty symptoms, ask about taxotere instead. That's what I did. Apparently Taxol is a natural drug from the yew plant and can have minuscule abnormalities, where as the taxotere is completely synthetic and exactly the same every time. (just something to keep in the back of your mind).
Best of luck to your mom, and keep looking forward!
Thank you so much for sharing your story, this gives us a lot of hope. Surgery is tomorrow, we have all fingers and toes crossed! Will keep you posted.
After 5 days things have settled down and I feel pretty confident of my mum's recovery. Surgery was successful but much more complicated than surgeons thought. They removed the ovaries and uterus, the entire peritoneum which was a huge tumour mass itself, the gallbladder, a bit of the liver and diaphragm, and the worst part... most of the bowel was affected so they only left 2m of intestine... and a stoma. Digestive surgeon said 2m is the minimum needed for living so she is very likely to have issues. A nutritionist will take care that she does not lack any nutrients and see if supplements are needed. Mum is pretty sad about this but surgeons said this was her only option for survival: the bowel had a few places already pressed by tumors so she was about to have an occlusion. Apart from that, they removed almost all of the tumors, although there are still tiny bits that could not be removed but surgeons said they should not give problems by now. Recovery is going very well but I think she will stay at hospital at least 5 more days. Hopefully in a few weeks we will be able to say this surgery saved her life 😊. Thank you all for your kind words and advices!
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