This is my first post but I've been reading your stories since May when my Mum was first diagnosed. She's now had x6 first line carbo/taxol and today we went to get the results of her latest scan. We have been previously told that she has reacted well to chemo and her CA125 is down to 13.
We have been told that surgery is not an option and never will be due to the 'spread' of Mum's cancer across her peritoneal. What I don't understand though is that other women with PPC are given surgery. PPC in it's nature means there isn't necessarily a mass to remove like in the case of OC therefore his explanation didn't really clear things up.
As is stands Mum's chemo is dormant and she's been put on 'watch and wait' with her next appointment booked in for three months. I'm looking into getting a second opinion, however she's being treated at The Christie which is a centre of excellence so can I still push for one?
Today we didn't see the consultant and the person who delivered the news wasn't in the MDT meeting. I felt like he wasn't giving us specifics into Mum's situation and he was quite vague. We now have a lot of further questions and have no idea what to do going forward.
I can't rest until I've tried everything. Can anyone give me any advice? I'm so upset that Mum hasn't made it to NED. Do most people make it to NED after first line? I feel like the outlook is totally bleak as it's just a case of waiting for it to become active again.
Thank you in advance x
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Tulip15
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I was in C's also about midday for my appointment ( bloods an hour before) and didn't see my named oncologist - but one of the team of which there are many! In my opinion all good.
My CA 125 is now down to 290 from 5000+, ( second line weekly taxol ), so 13 is 😘 and shows that things must be stable ( if this is significant in your mum's case.)
I think it is so difficult for the doctors to pronounce NED after first line, I have learnt that nothing can be taken for granted or is black and white. All you can do is take their advice and see how things go over the next 3 months.
If you are still worried why don't you ring the hospital and ask to talk to and maybe see a different member of the team. Especially when you have had a bit more time to mull all your worries and concerns over. Write all your questions down so you go well prepared. I think sometimes you only think about the ramifications when you get home!
My advice would be to stick with Christie's until and unless you feel you are not getting satisfactory answers or a good plan forward. How does your mum feel about it all ? Important! ( speaking from experience.....)
Don't be downhearted, there are many many routes and options. Let us know next steps...
I was turned down for surgery this time because of spotting in the peritoneal area. I also had a second opinion and was told it’s like chasing ghosts. Because some spotting will be too small to see so a major operation that won’t do a complete job making chemo only the most effective route
Tulip, has your mother had IP chemo ported directly into her abdomen? The results from this are excellent. Initially I was diagnosed with PPC. I had chemo first and then massive TAH, etc. (details on my profile.) Surgery revealed that I had hi grade 3C OC. I am now 15 months NED. Get a second opinion. FYI, older women may not be offered aggressive treatment. So, do whatever it takes to get a second set of eyes on your mother's situation.
Hi it’s all so confusing. you don’t really get time at appointments to absorb what’s being said and think what you would like to know.
Absolutely get a second opinion. 1. Never wait in cancer, when you wait it’s too late 2. In Reviews medics take time to explain about your disease & pros and cons of all possible treatment. Help u to learn how to make decisions. Youll feel better even if you stick to Christie plan. 3. Key centres follow their set treatment protocols, you need the best for ur mum and are only as good as their experts. 4. A second opinion from a surgeon specialising in your mums condition is best placed to comment on surgery. I’m on holiday but can pm a couple of cutting edge surgeons in the uk with intl reputations. I know several people told by this centre of excellence that they can’t be operated on and they have had successful surgery elsewhere. Also some who haven’t because they now know why surgery won’t help in their case.
Thanks for your reply. I need to do some research into getting a second opinion but if you could send me any names when you can I'd appreciate that. Thank you x
Hi, my mother has also been told it is unlikely she will have surgery. I completely understand how you feel, you just want them to take it out of her and give her the best chance possible of beating this awful disease.
Initially my mother was to have surgery first for high grade serous OC at specialist centre but when they went in with camera before opening her up they found a lot of nodules in her omentum so referred her back to our local hospital for chemo first but did say they would like to get her back for surgery if she responds well to the chemo.
However her oncologist here has said there will be no surgery in his opinion. My mother and I were that shocked we didn’t ask any further questions and nothing has really been explained to us in regards to treatment or prognosis.
My mother is 68 and has a 15cm mass. She asked me after the appointment what it meant if she didn’t have the surgery and the only answer I could give is that she would never be cancer free.
I actually work at our local hospital and the doctors I work with said I should fight to get her the surgery as they believe it is probably the best option. They recommended asking for second opinions so perhaps you should.
My mother is not really in the best of health and is quite frail (was very high risk for surgery) she is relieved she doesn’t have to go through surgery as she did not really want to go through with it initially (I posted on here for advice regarding this) and so far she is ok with the chemo (had 2 low doses of carbo so far).
I am not sure if it is worth putting her through such an aggressive surgery in her case but we are going to reassess what we feel after the chemo but ultimately it’s up to her.
If your mother is in generally good health I would certainly be seeking second opinions if this is what she wants, it would not harm to see if another oncologist would treat it differently.
I was also turned down for surgery but following a visit to my GP he found a surgeon at Queen Charlotte's / Hammersmith in West London who agreed to operate. The cancer had spread quite extensively but the surgeon did manage to cut it all out and I am now at home having six cycles of chemo.
Hi, I was also declined for surgery because it has spread to the omentum, peritoneal cavity. I’ve had some mild success with carbo and Avastin. Paclitaxel was subscribed but I had a “severe” reaction so it was discontinued.
I was diagnosed with stage 3 high grade serous PPC on my 66th birthday in May 2011. My CA125 was 8000 . Surgery was not an option for me either so I had 6months of Carboplatin/Taxol and responded very well. My CA 125 was back to normal and a scan showed NED at the end of treatment. As far as I understand dormant and NED is the same thing. No evidence of disease just means it cannot be seen in the scan .
I had three monthly check ups and almost 5years treatment free. Then it came back in my peri aortic lymph nodes and I had more chemo which zapped it again .
Three weeks ago I had the unpleasant news of a diagnosis of breast cancer which is Primary and not related to my PPC. Now I face a different journey. I’m telling you my story so you can see that women without surgery can survive too. I hope you get a second opinion and if they still say no surgery be assured that things can still work out for the better.
Thank you for your post. That gives me hope. We're still doing a bit of research to decide what Mum wants to do r.e getting a second opinion. I'm really sorry to hear your latest news. I take it there is a plan for you? I wish you all the best xx
I was about to post something so similar and I came across this post. I'm so sorry I was told the exact same thing today but in a Kent hospital, mum can't have surgery because of the spread in her small bowel and her cancer is "stable". Her chemo has now been stopped and we've been told to have another scan next month- again watch and wait. It's so so difficult to just have the next steps all just cut off and told to sit still and almost wait for it to return. And having the hope of surgery ripped away just broke us. We Don't really know what to do if anything right now
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