I'm New here. I was diagnosed last November as having Stage 1c2 Grade 1 ovarian cancer but a less common type which was an endometriod adenocarcinoma of the ovary.
I had two operations as nobody suspected cancer until the biposy came back of the cyst and ovary they removed. Then 6 weeks later I had the hysterectomy surgery to remove everything else. No spread was found elsewhere so I remained at the same staging.
I'm 42 and would love to hear from other women who had this type of ovarian cancer. It would also be great to hear any tips or advice on handling a surgical menopause. I'm not allowed HRT as my cancer tested positive for ER and PR hormones.
My body has changed and my moods and anxiety can be awful. Other days I just feel numb/nothing. I have zero motivation to do much. The menopause has been the hardest thing to deal with and I don't really have anyone I can talk to about it who would understand 😕
Anyway thanks in advance to all you brave ladies x
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Nara42
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Hi there,I had this type of ovarian cancer 10 years ago,stage 2b.Surgery and 6 cycles of chemo sorted it out.I have been very fortunate that I have not needed further treatment.Good luck x
Hello,I know your post was 8 months ago I just stumbled upon it, I was wondering if you could give me some insight I was diagnosed with the same OC as you but 3B it would of been stage 2 but the the tumor was large no lymph node involvement have been NED since October 2021, was wondering if your CA-125 was high? Did you follow any special diet, nutrition routine I had optimal debulking followed by 6 cycles of chemo thanks a bunch appreciate it!
Hi - I had the same type of cancer and same staging as you last year. Only after the biopsies were done following the hysterectomy did I find out that there was cancer on one of the ovaries. I was advised to do 6 cycles of chemo as a precaution (due to the "C" part of the 1C2 staging). I did the chemo I tolerated 5 cycles and they were happy with that. I have been advised not to do HRT. my main symptoms would be tiredness, lack of motivation, weight gain- a lot of this I can put down to laziness as well - I keep telling myself to cop on but hasn't happened yet. I have friends going through a bad time with the menopause - a couple of my friends think they are going crazy. They have found exercise a help - a couple have tried HRT - seems to work for some and not for others. Anyway don't be afraid to speak with your doctor - there may be alternatives to HRT out there - best of luck.
I have endometriod adenocarcenoma also, stage 1c3 low grade, and having chemo currently as the tumour burst during the surgery in July. The consultant suspected stage 3c so pleasantly surprised to only find on my ovary and nothing on the suspected lymph nodes removed or other bodily parts moved or those inspected and put back!
I’ve found very little specific info on this type of cancer as most studies and stats etc are with the more common serous.
I was already post menopausal but removing my ovaries saw a return of some of the symptoms like night sweats,, hot flushes, hair growth and feeling Niggly
My partner proposed a few weeks ago and my grand daughter was born a few days ago so I have a lot to live for and hoping to be here for some to come
I’m also new here. I’m 49 and have been told for many years that I have endometriosis. I went to my GP in February insisting they send me to a specialist centre. 2 scans later I’m told I have a cyst on my ovary and varying messages about what needs to come out. Long story short - right ovary and cyst removed. The lab said it was stage 1C but consultant said it is 1a. It was so confusing. Like you,?I cannot find much information. I may need a hysterectomy too but did not want to go through that immediately due to my concerns about going into menopause. Doctors speak to casually about it and HRT. I have to get my head round this though. Although I am not exactly in your position, we are in our 40s with low grade OC. What I did do before the op was start therapy with the psychologist who introduced me to EMDR/tapping which helps regulate the nervous system when we are anxious/stressed. I feel this helps me as well as walking, nature, exercise ( when possible- even the smallest amounts throughout the day), mindfulness and journaling the good things from each day, however small that may seem. Our attitude and mindset is so important even though I also feel shattered, worried, unmotivated etc at times. Support from this group and other networks we may have is also good. Affirmations about your menopause may help.
You have made me think about clarifying the type of cancer as I cannot even find anything on stage 1a, just 1. You’ve also helped me to think about having a further scan on the other ovary sooner rather than later. I must thank you for that.
I don’t know if there are ways of staying in touch but it would be nice to to.
Hi!It would be good to clarify 1a or 1c. The c means that the cyst had burst either before or during surgery. If its 1a than it was contained in the ovary I believe.
Because my cyst had burst before surgery they advised the further surgery to check if any cancer cells had spread elsewhere. Thankfully none had.
They also offered me chemo. But after one cycle I stopped due to side effects.
I'm glad I didn't continue as it was doing more damage than the cancer had done to my body !
The problem with a less common type of OC is they follow the guidelines that cover all OC even though they all grow and behave differently.
Also you can request all your medical notes from the hospital....I did as i was suffering so much anxiety and stress because things weren't explained properly that I kept panicking. I recievee all the notes read them all and feel much more at ease about my own health now.
I'm one of those people who needs to know the ins and outs of EVERYTHING!! Especially when it is happening to me and I'm putting my life into the hands of others.
I would be proactive and ask for a scan? Are you being monitored?
I have blood tests every 3 months.
I had one ct scan 6 months after surgery and all OK.
They just monitor my CA125 level now to make sure its not going up. So far so good.
The mcmillain nurse did say she could refer me to a menopause clinic so might ask for that as well.
There's nothing worse than feeling out of control with your own health !!
Exercise helps me a lot so I've taken up running!
Happy to keep in touch not sure if you can send private messages here will have a look and see if I can figure it out
Nara42 thanks so much, this is so helpful. I feel so good that you understand. It would be great to keep in touch. I should have a scan in 3-4 months for the left ovary/uterus . I’ll ask for bloods too. You are right that they give what they consider enough information but actually there are gaps which leave us stressed. Thank you.
I can see you’ve had some informative responses from the forum community but just wanted to share some additional resources that I hope may be helpful for you:
- Ovacome’s booklet on surgical menopause – this provides suggestions on ways to alleviate your symptoms as well as a webinar called ‘Managing Menopause’ with menopause expert, Dr Louise Newson: ovacome.org.uk/surgical-men...
- Our surgical menopause booklet signposts to our younger women’s guide, written in partnership with several other gynaecological cancer charities. There is specialised information on early menopause from page 18: ovacome.org.uk/Handlers/Dow...
I also wanted to let you know about two of our online support groups, that I thought may be of interest to you. These both provide a safe and supportive environment to speak with others who may be going through similar experiences, ask questions and share information.
- Our rarer cancers group, for anyone who was diagnosed with an ovarian cancer which is not high grade serous: ovacome.org.uk/event/rarer-...
You would be really welcome to join us and it would be great to see you there. Please let me know if you have any questions about the groups, or have any difficulty signing up.
I’m really sorry to hear you have been experiencing anxiety and changes in mood. Is this something you have been able to discuss with your GP or clinical nurse specialist? If you would like to talk anything through with our support team, please don’t hesitate to give us a call on 0800 008 7054, or chat with us directly via the forum. We’re here to support you and are happy to chat about whatever is on your mind.
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Avastin and less-common side effects, esp. joint pain.
Hello. I'm new here and just want to connect with other people and ask for advice and support
New Here and I'm Terrified
Just Diagnosed with OC
