Stage 1C endometriod adenocarcinoma.... chemotherapy?

Hi ladies,

I would really appreciate if any other stage 1Cs out there, with the same type can please kindly let me know whether you had chemotherapy.

I am 1C . Oncologist was on the fence about chemotherapy because all my biopsies and the ovary and fallopian tube that was removed, came back with good results (showing no evidence of cancer remaining).

I have thought for two weeks about the chemotherapy. The decision has been made more difficult because i am hoing to have my eggs harvested and this will involve stimulating the remaining ivary and with a low ovarian reserve, i have been told that it's likely that i will go into menopause after the chemotherapy.

I don't want to go into menopause because ive been told that HRT will not be available for me because my cancer was caused by hormones.

I am 37 , so i am not young but i have been planning to have a child with my partner and now all this is pending my decision to have chemotherapy.

I have been offered 5 months of carboplatin alone , if i want it .

Xx

18 Replies

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  • Hey Lollie!

    I had the exact same diagnosis as you. My cells were high grade and because of this I was advised to have Chemo! I too had negative results from all the tissue test following surgery I had the full surgery as I was 45 and had already made the decision many years ago that I was not going to have children so my decision was made that bit easier because of that! I was aware about surgical menopause as I hadn't started menopause before surgery but apart from the odd hot flash I have not suffered particularly badly from menopause symptoms!

    The Chemo was not as bad as I thought it was going to be but it was tough. Again I was prob lucky as I didn't suffer too much from side effects! I got though it ok and am now almost a year out from end of Chemo.

    You do have a big decision to make and I wish you luck with that decision! Chemo is tough but doable and for me it gave me reassurance but I was in a different context than you overall!

    Best of luck with your decision making!

    Dx

  • I'm 1A serous high cell cancer .

    It's not the same as yours but I am currently having 6 cycles of carboplatin for precautions for if any cells were left after a hysterectomy .

    The chemo is not to harsh - doable but does have some side effects mainly nausea tiredness constipation .

    I had the choice as to have or not but I wanted the best possible chance of preventing it coming back .

    It's a personal choice and only you can make that decision but good luck and I wish you well x

  • The surgical menopause I'm 45 has been very bad though especially the hot / cold flushes .

  • Are you low grade? I have the same type as you,mine is low grade,and I did have chemo but I am much older than you.x

  • Hello, yes mine was grade 1

  • Hi Lollie I was diagnosed with stage 1c too, but clear cell carcinoma, which is high grade. Because my cancer type was high grade, my oncologist said that it was standard procedure to have chemotherapy. Having cancer was such a shock that I didn't really have time to research and think it all through properly - and because my oncologist said it was standard procedure, I just went with it. There wasn't even time to discuss potential side effects, etc. I was told that only 8% of women with my diagnosis get any benefit from chemo - which I thought was rather low - I've subsequently found out that by exercising moderately for at least 30 mins 6 times a week, gives you 30% chance of preventing recurrence! (After investigation, and against the strong recommendation of my consultant, I chose not to go ahead with my final chemo session. I wish I'd had the courage to opt out of the 5th too.) Over a year on, & having done a load of reading and investigation, I think I would now have the courage to go against my consultant and not have chemo at all, & instead, focus on lifestyle, diet, stress, environmental factors, etc, to build a healthy immune system to fight recurrence. The fact that your oncologist is on the fence sounds great to me - there's no pressure to have chemo given all the other issues you've raised. And if I were you, I wouldn't have chemo. However, I'm not you and we are all different, and you need to investigate this for yourself to get clear about what really feels right for you. If I were you I would explore more the pros and cons of having and not having chemo with my oncologist, I would also ring organisations like Macmillan and Ovacome, to talk to the nurses there to talk through issues and support you with questions for your oncologist. If you live near Bristol, get to the Penny Brohn Centre - they have a clinic with doctors for people having treatment on a Monday morning - who could advise from both a conventional allopathic perspective, as well as an integrative, complementary perspective, or ring them on 01275 370 111 . We're very behind in the UK with integrative (i.e. holistic, lifestyle changes together with conventional, allopathic medicine.) Wishing you the very best of luck with this xxx Sundra

  • Hi Lollie,

    I was 1c,but not the same as you,I had Papilliary mutinous cystadencarcinoma and I am older than you.

    I had ascites that had to be drained and cancerous cells were found,which was why I had Carbo/Taxol.

    If the chemo gives you the best chance I would have it, hoping the other ladies that are younger can help with the fertility issues,but these days,late thirties and early forties are nothing to have a first child.

    Good luck with your treatment and decisions,

    Carole xx

  • I was diagnosed with stage 1a endometrioid adenocarcinoma grade 2. I was advised that I did not need chemotherapy as at my staging the risks outweighed the benefits. I had a radical hysterectomy in May 2014. By December I was having symptoms and a recurrence was confirmed in January 2015. I will never know now if chemo would have prevented this.

    I too was told to avoid hrt but have to say the symptoms settled down within a year. They can give you other medication to help with the hot flushes that is not hormone based.

    Good luck with making your decision.

  • I don't often post on here but am probably the closest you will get. I was 39 when I was diagnosed with 1c endometriod grade 1. They had to have many meetings about me as they didn't know what to do! The only difference is I had already had two failed cycles of ivf - I had severe endometriosis and because of the ovaraian cancer I now live a pain free life. I had 6 cycles of carboplatin only which was ok but I got very fat from the steroids and three years later I've only lost a stone. My surgical menopause was unbearable and after attending one of target ovarian cancers being together days I made my gp make me an appointment at the menopause clinic where the consultant wrote to my oncologist etc etc and eventually I was prescribed hrt patches I had no quality of life in menopause and had tried everything else ! Anyway I've rambled on here a bit - just make sure you accept your chances with the egg harvesting it's really hard ivf because the media only ever shows us stories of people with twins etc and they are such a tiny minority im obviously a bit negative about the industry but I hope everything works out for you xxx

  • Hi,

    I'm 52 but I had the same diagnosis. Grade 1 endometriod, Stage 1c. I wasn't menopausal but not planning to have children. I underwent a full TAH with lymph node dissection. My pathology results post surgery were completely negative. The oncology team did NOT recommend chemotherapy for me. Low grade cancer does always respond well to chemo. Since I showed no evidence of disease after surgery, the chemo oncologists thought it wasn't necessary. I continue to be monitored every 3 months.

    All the best,

    Cheryl

  • Hi really sorry to hear you are in this situation. My story is a bit similar but I was a bit older. I'd been trying for a baby with my partner, but was diagnosed with multiple fibroids and a cyst. It turned out to be same cancer as yours also stage 1c. However I had to have chemo as the cyst had ruptured on removal. This is obviously different to your situation so I don't know if this helps? Very happy to answer any other questions if it will help I had some tough decisions to make at the time but I'm five years in remission now so have lits to be thankful for!

  • Hi La Griffa , thanks....

    My cyst also ruptured but because the surgery results showed no evidence of the cancer, i am on the fence about whether to have the chemotherapy. Ive been recommended 5 montha of carboplatin. Which chemotherapy did you have? My other concern is that the chemotherapy will cause my remaining ovary to fail and i'll have menopause as a result. Ive heard so many stories of women stuggling with it. I would not been able to have HRT , ive been told by my oncologist. so this makes it a bigger decision.

    Many thanks x

  • Hi I had 4 rounds of carboplatin then a hysterectomy, where they found another small mass part attached to the bowel so regraded my cancer to stage 2. The advice then was to have carboplatin & taxol another 4 rounds which was pretty tough. For me the menopause symptoms were horrendous and quality of life was rock bottom. After lots of research and discussions with GP I did take very low dose of HRT for 3 years which was a miracle, but last year they tested my tissue from first op and it came back weakly estrogen positive so I was advised to come off HRT. I still don't really understand why they didn't do that test as standard procedure after the surgery as I could have made a more informed decision about HRT. I still get hot flushes and disturbed sleep due to night sweats & my partner would probably say I'm a grumpy cow at times! But I know the triggers and I think the symptoms are lessening over time.

  • Hi Lollie, are you in the UK? If so and depending on where you are, there may well be protocols in place to fast-refer you to a fertility consultant specialising in the impact of cancer and its treatments.... I was 40, 1c due to rupture and just starting IVF when diagnosed. There is a lot to weigh up and my surgeon insisted we meet with the fertility link consultsultant. Mine was a different type (low grade mucinous) but I had been advised to have carboplatin. The meeting with the fertility specialist was incredibly helpful for us.... Very best wishes, Sxx

  • Hi

    1C (mass had previously ruptured, then ruptured again during surgery and cancer cells in abdominal fluid) Grade 3 cells. Had 6 sessions of carbo and Taxol but that was due to type (clear cell) and the grade

    Ask your Onc what he or she would advise their mum or sister in similar circumstances to yours.

    Take care

    Clare

  • I had the same diagnosis and was 42. I had a full hysterectomy and was told by one dr that I didn't need chemo as no evidence of it anywhere else. Then a new dr said that I should have it to ensure that anything that may have been missed gets zapped! I had carboplatin only. It was tough but I am glad I had it as I didn't want to look back and to say I wished I had. I am not in the same situation as you as I had one child but the drs should help you decide with all the pros and cons. I found the menopause ok remember we are all different. Talk to the drs about the choices you have. The desire to have children is so strong but right now you need their help to help you make the right decision. Keep positive wishing you lots of luck xx

  • Hi I had 1c2 endometroid..grade 2 ..Cyst ruptured 5 days before surgery.I had full lap hysterectomy, omentectomy and lymph node dissection.all scans showed no evidence of disease after surgery but due to rupture.. chemo was reccommended. I had carboplatin only chemo and it was very doable.did not loose any hair and many people continue to work on this regieme. Whether it made any difference I don't know...I too was very reluctant to have chemo and still wonder if it was necessary. But I made a choice and have moved on now. I am enjoying life which has taken on a whole new meaning.good luck with your choices

  • hi

    thought i would just throw in my experience as a 1c'er!!!! i had a hystericalectomy ( as i refer to it) and 6 months chemo carbo only like you no hrt so have just had to get on with it.

    i found chemo ok odd day felt rough but in the whole ok , the thought of chemo was worst ( fear of the unknown)!! the menopause symptons well the hot flushes accupuncture has eased them amazingly i would never had thought it possible !! i still have sessions now my accupuncist ( is that a word!!!) can even get rid of them when i get them at regular times!!!!! bonkers i know

    other symptons i can cry at the drop of a hat somedays but thats not that bad its a bit like been a teenager all over again!!!!!i am back at work managing fine and so far have not killed any of my colleagues particularly when they offer the helpful advice of " your face is red!! are you having a flush" !!!!!!!!!!!!!! so far they live but who knows what tomorrow brings!!!!

    you have a huge decision you have to make for yourself i wish i had the right words to help you !! if i can offer any more help particularly on the accupuncture PM me sending huge hugs 😀

    claire

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