Chemotherapy advice

[JanFre]

I have recently been diagnosed with Stage 1c low grade ovarian cancer. I have had surgery and the cancer removed. I now have the option of chemotherapy but my surgeon says the benefits are negligible. Does anyone have any advice?

[Spirit22]

Hello hope you are recovering well from your surgery. I had my surgery in Oct 2018 and started chemo Jan 2019 through to may 2019. I am also low grade and early stage like you 2a. I am much more informed about my OC partly due the lovely ladies on this forum. Would I have chemo knowing what I know now? a difficult one. My CA125 has remained the same since my op at 9 even through chemo, although last test it was 7 due to being on Tamoxifen Oestrogen blocker as maintenance.

I am sure the other ladies will add to this much better than I can.

Best Wishes Lesley x

[JanFre in reply to Spirit22]

Thank you Lesley

[Artgreen]

Hi there, I’m stage 3a low grade and I did have the chemo although I’m not sure that they even suggest it now in some countries. If I had been stage 1 I don’t think I would have had it as the 6 months are pretty brutal and they’ve already got all of yours. There are lots of future options which may never need. I’m very glad they found it before it had spread.

I hope you continue to heal and soon feel well again.

Alex x

[JanFre in reply to Artgreen]

Thanks Alex. It’s so difficult to make a decision with so little information- I’m worried I’ll make the wrong choice and regret it if it spreads

[Artgreen in reply to JanFre]

I really do understand that. It’s a big decision to make . I’ve learned that a lot of people find their cancer becomes immune to chemo so it can , at this early stage, be better to wait and see and then have it as your defence if it does recur. It may be more effective when you’ve got something for it to kill rather than just your healthy cells. I had it because my tumour burst on being removed so there was contamination for it to attack.

Wishing you the very best

Alex

[keeponkeepingon]

Low grade 2b,six cycles of chemo, which my consultant told me was worth having, going on 9 years clear so far,and have never regretted having chemo.

[JanFre in reply to keeponkeepingon]

That’s excellent news

[Beauxbelle]

Where are you being treated? If you have access to trials, see if you can get on one. Particularly one that does the immunotherapy. That seems to be the buzz word at the moment. If my daughter was still around I feel sure she would have gone for that above all else. I wish you well in your choice. Sending you hugs 🤗❤️❤️

[JanFre in reply to Beauxbelle]

I’ll certainly ask - thank you for the advice

[Zssu]

Hi,

I was 1c high grade. My surgeon said no to chemo and even too many ct scans. In the end I went with my oncologist who recommended carboplatin because I am brca 1 positive. I don’t know if you want more opinions that is always an option at this stage

[JanFre in reply to Zssu]

Yes my surgeon said the same - I think I will seek other opinions

[triplets]

Hi sorry that you have had to go through this scary time, we all know how you feel. I was diagnosed in July 2016 with stage 1c2 high grade. I underwent total hysterectomy and was recommended to have chemo. I was offered carboplatin and taxol, but after doing some research it seemed the taxol would give me only a tiny % more protection and I would lose my hair. I decided to have the six cycles of carboplatin as a back up. It was very do able, I wasn’t sick but just felt very tired whilst on it. I do not regret going down that road. My CA125 at the time of diagnosis was only 12, since treatment it’s remained at 8. I was tested for the faulty brca gene and do not carry it. I wish you well, I am sure you will make the right decision for you. Good luck. x

[Singingsue]

Hi I think u should think about ur options before u decide what to do ur going through a lot and u need time to listen to urself the answers r there take care x

[koffeekat99]

Hi JanFre

I was diagnosed with low grade OC stage 3b over 5 years ago.

My advice is to write down all the things you are concerned about, and particularly anything that would affect your decision on what to do next. Then talk them all through with your oncologist, preferably someone who specialises in the treatment you are considering (so the oncologist who works in chemotherapy rather than the surgeon).

Ask them anything you need to know to make your decision.

I remain happy with the decision I made about treatment. Was it the optimal treatment for me, could my situation be better or worse today with a different decision? I will never know because we are all different. I just know I asked a lot of questions, considered my own situation including the impact on another medical condition I have and made the decision that was right for me.

Being given the choice with vague information is difficult. The right decision is whichever one you choose.

[Solange]

Hi there. I was diagnosed with low grade serous OvCa thirteen years ago. Had an op to have everything taken out, followed by six weeks of Chemo. However, it now seems that, after years of research, the experts have realised that High Grade and Low Grade are different types of cancer. Low Grade is far rarer and doesn't respond so well from Chemo but on the plus side, grows more slowly.

My original Oncologist said that an enormous Ten year Trial had just finished and it concluded that it didn't matter whether you had lots of blood tests and scans, compared to others who had no treatment, there was barely any difference in length of life, you just knew sooner that it was back if you had lots of tests. In fact he said those who hadn't had tests, followed by Chemo, led much happier, healthier lives. In fact, when I had my first recurrence I was very upset that he wouldn't give me Chemo. I had second opinion and the second Oncologist agreed with first one.

I don't know whether this will help you but I send you my sympathy and do wish you the best of luck.

Solange 😊💐xxxx

[Caroles1]

Hi,

I was 1c mucinous and had carbo/taxol and am still here, no re occurances 5 years later.

I am of the opinion throw everything at it, (have chemo of some sort) kick it back into touch.

I would have preferred not to, I did lose my hair, but it grew back and I lived, so far.

Hope this helps,wish you all the best,

Carole xx

[Lauren16]

Hello JanFre,

I’m so sorry you find yourself in this position. I was diagnosed with OC over 6years ago. I was told I had Adeno Sarcoma, an unusual cancer for the ovary. I had the surgery it was contained and they thought they got everything, however they could not be sure, so recommended two types of chemo, I would have 18 weeks of treatment. After asking all my questions, one being the percentage of DIFFERENCE BETWEEN HAVING THE CHEMO AND NOT. If the cancer would come back or not. THE ANSWER WAS 3%. So for me it was a no brainer. I was not prepared to give up 6 to 12 months of my life, choosing quality over quantity. I had scans every 6 months for many years, now only once a year and I will be having them for life. I believe this is as much for them as for me. Due to it being an unusual form of cancer in the ovary, not so many cases.

As was mentioned previously, you need to make a list of questions you need answers to. Then you will be in a more informed position, to make the very big decision you have to make. My CA125 has never been high, even when I was diagnosed, so that was not a good indicator, for me. Several years later I had the brca gene test and am not a carrier.

I wish you well and hope this has in a small way helped you on your road to recovery.

Take care and be kind to yourself, big hugs.x

[Sue-m]

I was diagnosed with high grade 1c o\c in 2008. So only one ovary involved but when it was removed by radical hysterectomy it was mushy. My surgeon thought some cancer cells could have spread into body. He recommended chemotherapy. I saw an oncologist who gave me all my options but his choice seemed to be go for chemotherapy. I spoke to an ex work colleague who was a nurse specialising in breast cancer, she advised me to zap it. To take all that offered. I had carbo\taxol chemo for six three weekly sessions. Plus I was on a clinical trial of aviston for a year. Yes, I lost my hair, had severe side affects. It was a difficult year for me but I have no regrets. My tumour markers went right down. CT scans showed no evidence of disease. However, I did have swollen lymph nodes to rear of stomach. These could not be operated on because too near my heart and operation would be dangerous. I have complete trust and respect for my oncologist. I was told these swollen lymph nodes could be cancerous or just some infection, best to leave alone and just get on with living. Which I have done.

Over the years my tumour markers have been up and down. I was advised to go on tamoxofen in 2015. Then I was placed on watch and wait approx four years ago. My affected lymph nodes had increased but I was stable. I didn't want to go back on chemo. At that time I was busy looking after elderly relatives. So basically no time for any treatments or clinical trial. Unfortunately I started with back pain about eighteen months ag

o which I thought was arthritis. Scans didn't show anything. Six months ago pain became much worse. Now in bowels. So long story short even though I kept thinking it was not cancer related, it was. Cancer in lymph node near small intestines had spread into duodenum. I started carbo\taxol again in September 2019. Now on weekly chemo which is easier for me to take. Very time consuming. My tumour markers now 18. I have had 16 sessions just 2 to go. Again I have lost hair but I have a lovely wig. So easy to manage and save on hair maintenance costs. There is always a Ying and a Yang!!

I again have no regrets about having chemotherapy. I still very positive. I already booking more holidays. My oncologist says if my next CT scan is good and I meet the criteria I can go on maintenance drug niraparib. I am now not curable but treatable.

I don't often go on my iPad, I just too busy. I just wanted you to see perhaps the positives of chemo from my point of view. We all have different opinions. I hope you can make an informed decision. One that suits you.

You could try cold cap. Lots do. I tried it twelve years ago. Didn't like it, so didn't bother this time. But the caps now are much improved. I would also add my hair grew back last time same colour and straight as before. I have much support from family and friends, so I truly feel very blessed.

Stay positive what ever you choose to do. Good luck and health for the future.

Love sue. Xxx

Ps. Sorry to go on so much!