When I was first diagnosed with OV I was told have 3 chemos then a big debulking op followed by 3 chemos to mop up any wayward cells. This then changed to 4 chemos before and 2 after as Christmas got in the way, then, when I didn't get my operation at the last minute due to there not being an ICU bed available I have had all 6 chemos while I wait for a new date.
I have now been told that there will not be a 7th chemo after the op. What has happened to the mopping up of any cells left behind? My consultant said that as there was an 85% chance of reoccurrence an additional chemo will not make any difference. In my naïve way I find this hard to believe. I am sure the surgeons will do their best to get it all out but surely some cells will be left behind which need to be attacked by the chemo after all why was I originally going to have chemos after the op? I have reacted well to the chemo - just tired and hair loss so it can't be due to a bad reaction. Have any of you lovely ladies had experience of this and should I put up a fight for a 7th chemo?
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jenny8c
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Hi Jenny, That's really frustrating when they change treatment like that. It makes us feel like they're making decisions on the fly.
I had low grade serous cancer so my experience might not be applicable to yours. My cancer is not responsive to chemo, and that's what I was told from the beginning. But I saw it as my insurance policy (and still do). After my surgery, I was told no chemo. Then I was told the Tumour Board reviewed my case and offered chemo as a treatment even though low grade serous cancer is slow growing so they weren't sure if the chemo would actually destroy the cancer cells.
Like you, I tolerated the chemo well. And I asked if I could have a 7th session just in case. My oncologist said no. It wouldn't benefit me, and I had developed neuropathy. He also said no one had ever asked him for an extra chemo session.
Is it possible for you to get a second opinion on this?
Many thanks - a number of lovely ladies have advised me to get a second opinion so I think that is what I will do if only to get peace of mind. Sorry to hear about your neuropathy - hope it isn't too bad. xx
Hi Jenny, that just doesn't seem right to me - first Christmas gets in the way, then no ICU bed (I never went to ICU), now no 'mop up' chemotherapy. What is your post chemo CT scan showing? And your CA125?
I think a second opinion is the way to go. I know it's a hassle but it's so important isn't it? Could you talk it over with either your GP or CNS or ring the Ovacome Helpline?
Yes, I will contact the Ovacome helpline first and, depending on what they say either go for a second opinion or push for a seventh - you just want to feel that you have done everything in your power to beat this. Many thanks xx
Check with your CNS, there might be a reason why more are not offered, perhaps something to do with developing resistance to platinum, but I don’t know. I had four before the op and two after.
If you’re not satisfied with the answer either from your CNS or your consultant, a second opinion may be the way to go as it should be relatively easy to give reasons understandable to a lay person as to why.
Sorry I am quite naive and new to this - what is a CNS? I have a lovely MacMillan nurse who is always bubbly and optimistic - the exact opposite of my consultant. I will go for a second opinion - Many thanks xx
CNS is your Macmillan nurse - I think it stands for Cancer Specialist Nurse, they're usually permanently employed by your hospital. They act as a conduit between you and the doctors...
CNS in this context means Clinical Nurse Specialist and will be your Macmillan nurse. You could ask for her views too.
If you’ve had a further two chemo cycles at three-weekly intervals since your cancellation, does this mean there hasn’t been an ICU bed available for more than six weeks? I do hope the second opinion gives you the clarity you need.
Yes I have had two more cycles since my cancellation but I now have a provisional date of 29th March for the op so fingers crossed there will be a bed for me on that day!!!
Keep asking Jenny...my experience was that I would be told one thing at my regular Onc meetings and then the opposite at the next one. I kept asking about having Avastin and eventually I got it...but only when I asked them to explain why I wasn’t going to get it...turned out chief Onc had forgotten!!
As others have said..you do have the option of a second opinion.
Many thanks - your experience shows that we shouldn't just accept what we are told. I'm not good at taking consultants to task and you have shown me that it is worth it. xx
Hi Jenny. In slightly different circumstances, I had eight rounds of taxol with carbo then cisplatin. This was a first recurrence and no further surgery was involved. I had a reaction to carboplatin at round three so they stopped and so I missed that taxol altogether. A chat with your CNS then possibly a second opinion? I found having a second opinion very reassuring even though my current treatment was confirmed. Hope all goes well for you. Jo 🌻🌼🌺🌹🌸
Many thanks - I am sure a second opinion would make me feel better and will go for it. There is a difference of opinion between my surgical team who mentioned the 7th and my oncologist who has said no. Not confidence inspiring when they differ!!!! xx
It depends on so many things. What do you want from chemo? What stage is your cancer? Is the operation for pain or pressure? Which cell type? Which chemo?
Yes, you are right, it must depend on lots of things. Until I joined ovacome at the beginning of the week I had no idea there were so many forms of OC. I have stage IIIc/IV serous carcinoma of the ovaries and have been on paclitaxel and carboplatin. I have to have a full hysterectomy, removal of my spleen, omentum and a scrape of the cells off my diaphragm and peritoneum. (The good news is that my bowel is clear - yioee for some good news) I realise that I am quite naïve in some of my illness eg I have no idea what my CA - 125 results are so I need to ask a lot more questions. Thank goodness for ovacome and all of you helpful ladies. Many thanks xx
Jenny, you are doing well with learning a whole new 'language' so quickly! CA125 is a cancer marker which (usually) gives a good indication that the cancer is either 'quiet' (not causing trouble!) or gone! It should be below 35 and usually levels off at a certain figure. Mine is usually around 20. Some Oncologists don't discuss it much as it can make us worry, but I think it is generally an important marker. After first line treatment (FLT), your Oncologist would normally arrange a CT (or CAT) scan to see how you've responded to your 6 cycles of chemotherapy. Hope this helps. Take care, Linda xx 🌷
Yes I am having another CT scan on Tuesday. I will definitely be asking my consultant what my CA125 level was last time it was measured as no one has mentioned it before. I know all about other blood measures eg White blood cells, platelets, haemoglobin but not that one. I would rather they were honest with me so I can manage my expectations. Thanks for your encouragement and help. xx
I really feel for you - it's so hard when you're given one treatment plan and then it's changed & the change feels a bit arbitrary. I really echo what others have said about getting a second opinion - it helped me a lot, even though they said the same thing. I also transferred my care to my second opinion onc at a later stage as I had more confidence in him - and that's helped me enormously. Yes and do speak to your CNS, ring the Ovacome nurse and the Macmillan nurses - they all helped me a lot to understand the issues better and so to feel more confident and able to participate from a more informed place in my care. Wishing you all the best with this xx Sundra
If I knew 3 years ago what I know now I’d have pushed for a 7th chemo for my special person to mop up any cells, she reoccurred 6 months after debulking so YES push for it tell them it’s to give you peace of mind even if you do reoccur again at least you can say you tried xxx
Many thanks - I will ask for a second opinion but unless I receive a good explanation I think I will be pushing for a 7th. As you say - it will give me peace of mind. xx
Yes I have heard that people can have 7 so I will ask for a second opinion but unless I receive a good explanation I think I will be pushing for a 7th. Many thanks xx
In many treatments, they have found that a chemo bath directly into the abdomen at the end of surgery does more to stop recurrence, then the normal after treatment IV Chemo.
There's a name for this treatment, but I forgot what it was.
Please look it up. I think it is the common treatment in Canada, with surgery first, then the chemo bath.
Lindaura, just read this article. It sounds really promising! In the USA I think they introduce some drugs into the peritoneal cavity too- but this 'bath' sounds good. Lx
A second opinion might be useful, but it may be that your oncologist feels it will likely recur; when it does, they will offer a further course of chemo, probably another six treatments. He may feel that having an extra one now might be of little benefit and might increase the risk of your having a reaction when you need another course of chemo later, if that's what happens, it's all about balancing risks and benefits. But I I think you need to ask him to be clearer - in order to get clear answers, we have to ask penetrating, informed questions, or at least, that's been my experience. Although asking that type of question does elicit opinions and answers one might not want to hear... Certainly, my oncologist said they would give me chemo now, and 'when' it recurs later, more chemo and so on...
Many thanks - I think you could be right but the way she told me was so negative and discouraging. I must be better prepared next time with my questions. Being on ovacome is being a tremendous help. xxx
Yea, I know what you mean when you say 'negative and discouraging' - what we want to hear is, we'll do these treatments for you and it will be gone forever, or for a long time at least... but of course, they cannot say that, the most they can do is give you statistical outcomes, and of course, everyone is different, so even the stats are only a guide for each individual. It's a tough disease... good luck.
I must admit that I usually do take a notebook but after being on this forum I will be much better prepared the next time. Thanks for your advice. xx
I initially was going to have 3 chemos, operation then 3 more but due to delay I had 4 then op but I was told I would have 3 afterwards (7 in total) and I did, so I would push for a 7th unfortunately I think different health authorities have their own protocols which is so wrong
agree about the second opinion....suggest while you at at it you also ask them what they would recommend if you do recur quickly....lots of love, Chris xx
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