Anyone decided against chemotherapy?

Hi , diagnosed with stage 1C .

One ovary removed , biopsies taken, lymph nodes sampled and omentum removed.

Post operation results showed no cancer, not even in the ovary which had the cancer.

(The cancerous cyst was removed in an earlier operation) .

The fluid which leaked from the ovary when the cyst ruptured, showed atypical cells (which are not cancer but not normal)

I chose not to have chemotherapy, as i would still like to have children and that is why i kept my right ovary (which did not have cancer).

My oncologist advises me that the chemotherapy would highly likely cause me to have menopause, so I decided against it.

I was not given any other options.

Has anyone else been in the same situation and not had chemotherapy, and been ok in the long run?

I have never found anyone else in the same situation.... if you have been in the same situation, would love to hear from you.

Thank you. X

16 Replies

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  • Was also told the chemo would improve my chances by around 3 to 6 percent only . Another reason for my decision

  • I too was told that. But how I wish I'd taken it .... 3 to 6 per cent is better than zero which is what I'm on now. There still isn't much out there to help people like myself that suffers so badly from panics so severe I chose to basically die . I hope you can come to the right decision for you. Never thought mine would come back but 3 years later it did... I found a lump on my neck ... in my lymph nodes now. Good luck with you decision. I'm sure other ladies on here will give you good advice. Take care .xx

  • Hi I was in the same situation in 2012 1c Grade 3. I was advised to chemo. I chose not to.... very long story... I had terrible panic attacks and couldn't cope. Got no support or anything . So I had a few years no problems but now sadly I am Terminal Stage 4 . I went to another oncologist and he immediately got me help and I am having my 2nd lot of chemo halfway through. This is now not a cure but to give me time.

    My advice is please please go ahead and have it. I wish with all my heart I could've had it if I had I may not be dying now.

    Think long and hard x

  • I was in a similar situation but I had my children and I chose chemo ... it was a belts and braces to give me every possible chance to survive ... good luck with your decision I found it to be the hardest decision but I'm happy with the way it went I'm nearly six months post chemo and still ned currently x

  • Hi

    I had cancer contained in the cyst which was removed, no spillage. Stage 1C. In 2012. I was persuaded to have a full hysterectomy with everything removed followed by chemo. I had one single agent chemo dose, with hindsight I would not have had the surgery at that time, my histology was all clear. I did have three children and was 45. I did recur in 2015, and from what I know now would have still most likely recurred regardless of my options. I am quite anti-chemo. So I would suggest you follow your gut instinct before making what is a huge decision. There is no crystal ball, there is no rhyme or reason behind why some recur and some do not, regardless of treatment choices. So personally I would decide based on how much disruption you are prepared to take in your life today.

    Good luck with your decision

    LA xx

  • I was wondering have you also thought about having some eggs taken and maybe looking in to alternative ways of having children - sorry I dont have any real advice/help but I wish you all the best in what ever route you decide to take xx

  • This is such a personal and difficult decision for you to have to make. I too was 1c but mine was clear cell which is unusual. My decision was really easy, I'd already had my babies, I was post menopausal so I didn't hesitate and had the chemo as a 'mopping up' exercise.

    You don't say why they removed the cyst and then the ovary in two separate procedures if the ovary had no signs of disease and why did they remove your omentum if no disease was present?

    You say the chemo would only increase your odds by 3-6% but from what baseline figure? Do you have all the information you need going forward?

    I think that had my circumstances been more like yours I would possibly have asked similar questions to those you are now asking however babies were not high on my priorities list and my own well being would have had to take priority, my boys came along and I adore them but I never had that broody feeling. Could you not have your babies as soon as is reasonably possible if you really want them? If you're not in a stable relationship then could you freeze your eggs from your remaining ovary? Then you could have the chemo as an insurance policy against further disease?

    Hindsight is a wonderful thing and how many people have later regretted decisions they made with their health? My chemo has left me with a few issues but I don't ever regret having it at all because I'm still here and as well as I could ever hope to be given the diagnosis.

    Good luck with your decision which will be the right one for you to make. I wish you all the lovely things you want from your life and that you get them all and most importantly that you remain well ❤️Xx Jane

  • Hi could i ask did you have any symptoms as it looks like u caught it early?

  • I was 40 when I was diagnosed in 2012 and was devastated at the time after full hysterectomy when they said I would need chemo but in hindsight now I'm so glad I did. I vaguely already knew a girl I met in hospital who was 24 who had a large cancerous growth attached to her ovary, she had this removed and also the ovary. They told her in her results she didn't need chemo and she was so pleased. Unfortunately 4 months later it came back and she died very quickly, it was so awful. Her mum is adament now that things may have been different if they had given her chemo in the first place. Just think very carefully - after this experience I would always air on the side of caution.

    Take care

    Jo xx

  • Chemo is recommended for 1c onwards.

    Can you have your eggs frozen as recommended or have your babies and go back for chemo.

    Would that be an option?

    There are fertility sparing options out there- just ask if you are eligible or if it is possible for you.

    I wish you all the best X

    PS I would also ask them was the atypical cells are

  • I was diagnosed 1c in 2008. I had radical hysterectomy, followed by chemo carboplatin and taxol. Plus I was on a clinical trial for 1 year of avastin. I must admit I was quite poorly with chemo but not everybody is. I took advice from nurses and doctors before opting for two chemos and the clinical trial. I was ned until 2015. I have had reacurrance in my lymph nodes. I am at the moment on watch and wait. I feel well. At the time when I opted for chemo I had been told cancer cells could have spread and I thought well just give me everything you got to get rid of them. All the best with your decision. It's a difficult choice but I have no regrets with having chemo. Good luck. Xxx

  • Hi Lollies, This is such a personal decision and should be based on individualcircumstances and professional advice I can just tell you my story. I was diagnosed with Stage 1 ovarian cancer when i was 51 14 years ago I had a total hysterectomy, removal of te ovaries and partial . omentectomy . I was advice to have chemotherapy as follow up treatment and took this advice on board I was supposedto have 6 rounds of carboplatinand taxol but after the 4th dose I developed shingles and was told because of this I could not have the final 2 doses. At the time I pleaded with the oncologist to give me the last 2 doses because I thought if I did not have them it would increase the chance of reoccurence. To cut a long story short it never came back.I was just unlucky to be diagnosed with Primary Peritoneal cancer in 2015.sO allI can say is good luck with your decision and to repeat it has to be yours taking into account expert opinion.Chris

  • Would definitely air on the side of caution, freeze eggs, get the chemo and allow life to take it's course.

  • Hi Lollie, my options were that my Chemo was my insurance policy, I was told I only had a slight chance of recurrence post Chemo. But this OC has twists and turns and it came back and I had two more chemo regimes and rt. So I would say take everything they offer you. Perhaps they can refer you to a specialist who could advise you on your options if you have one ovary left. I have never heard anyone who had chemo have an early menopause, you have early menopause when you have total TAH. Chemo may affect your fertility but again it may not. Really you need to be referred to a specialist who deals with this possible problem before making a decision which could affect your well being overall.

  • Depending on your age, chemo can cause an early menopause. I was 40 when diagnosed and in weighing up the various options was also told that in all possibility the chemotherapy would do this to me.

    I was referred by my Gyny-oncology team to see the designated link consultant in the fertility clinic. All areas should have a protocol to allow for speedy specialist advice for anyone diagnosed with cancer who is still hoping for a family. Our meeting was very thorough and helpful. You may well be able to find the area protocol via Google.

    I would strongly agree with asking for a referral and discussing all options.

    - I would also just say that there is quite a range of 1Cs- last year (I think), the stage was subdivided into three in recognition of this. Also and importantly it does make a difference depending on sub-type and grade as to how effective and how strongly chemotherapy is recommended. Some 1Cs are regarded as higher risk than others. It is worth looking at the detail in the NICE guidelines for this.

    - there is considerable variation in the prescription of chemo for stage 1c not just internationally but also from hospital to hospital within the UK. My understanding is that because there are two major trials which came to different conclusions but used different data protocols! The numbers of this early stage are quite small....

    Very best wishes, Sxx

  • Hi Love,

    I was 1c,but had ascites which had cancerous cells.I was told that my best chance was to have chemo,not best pleased,but,I wanted to live.

    It is a very difficult decision,but, you have to give yourself the best chance no matter what.

    Personally, I would have chemo, to make sure any cancer is gone.I am a coward,but I got through and it is so doable.I am 2 years NED after chemo and looking forward.

    Just wanted to share my journey,

    Best wishes whatever you decide,

    Carole xxx

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