Borderline Ovarian Tumour (BOT), hysterectomy, early menopause

FormerMember over 10 years ago

10 replies
30 subscribers
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Hi all

It's been a long time since I was in touch. You may remember that I had a very rapid journey to surgery in July. I had a radical hysterectomy + removal of both ovaries. A large tumour was removed (it had taken over my left ovary, and grown to 11cm x 10cm x 4cm). The tumour had spread down to my rectum. All was removed with surgery; no residual tumour left. After surgery, my consultant indicated that I was facing a stage II OC diagnosis but that we would obvs need to wait for histology to confirm. He indicated that there was around a 10% chance the tumour would be borderline and not cancerous.

I was very fortunate: the histology indicated that it was a borderline ovarian tumour (BOT). My right ovary was also found to have a BOT. A large fibroid was also found in my womb.

I will have regular monitoring and testing over the coming years.

I have recently turned 35 and so entered menopause..... a bit hectic but ok. Once we had the diagnosis and things settled, I started on oestrogen patches (HRT) after a month. These have really helped.

Finding support as a young(er) woman about having a hysterectomy that doesn't focus solely on fertility issues has been difficult. If anyone has any suggestions, please do share!

Thank you for all the kind and supportive words before and after my surgery. It was a very scary time and it was wonderful to have a group to reach to. I have been uncertain about how to engage moving forward; a BOT isn't the same as OC - but is often considered a form of OC - and has a different prognosis.... I hope that it is ok to remain connected to this group. I would be very happy to also connect to others diagnosed with a BOT as I would like to hear about their experiences moving forward - i.e. concerns about recurrence and transformation to becoming malignant.

Does anyone know of any resources about BOT, monitoring, recurrence, etc?

I have shared my journey on a blog... http://jozi-ovari.tumblr.com/

Love and thoughts to all
jx

FormerMember over 10 years ago

Hi there, I'm afraid I don't know anything about BOT but I do know lots of women that have gone into early surgical or medical menopause (I myself spent two years of my twenties on a drug which induced menopause and without HRT). Hysterectomies at a young age are sadly quite common within the endometriosis community - this practice is dying out as it's not always effective but there are still some women that have a full hyst and BSO out of desperation. Therefore you might find lot of women who can sympathise in the endometriosis communities - there's a great one on Health Unlocked. Lots of these women have additional gynae issues too so I'm sure many can relate to what you're going through. Hope that helps a bit x

FormerMember over 10 years ago in reply to FormerMember

Many thanks for this Cupcakegirl. I'll definitely check them out. xx

FormerMember over 10 years ago

hi jozi........i also was diagnosed with BOT. I am now 16 weeks post op.,if you would like to connect to me that is fine and will be happy to share my moving forward experience if you want a chat...in the meantime please let me know if you come across any information of interest to us..take care x Di

FormerMember over 10 years ago in reply to FormerMember

Dear Di

Thanks for your message; I'll be in touch privately. Please do have a look at my blog where I've tried to (and continue to) share as much info as possible. I also share my story and experiences.

http://jozi-ovari.tumblr.com

FormerMember over 9 years ago

Hi your story sounds very similar to mine .... I am due to have total hysterectomy , plus removal of omentum and appendix for mucinous BOT ..... I am 44 years old and completely terrified .... I feel like I didn't ask enough questions but just felt like I had to be brave and was quite blase when discussing surgery with my consultant . I am scared about having the surgery but feel like I need to put a brave face on for my loved ones . I'm worried that I'll have no sex drive as have heard horror stories from ladies who had their cervix removed (as I am) and will HRT turn me into a lunatic ???? My head feels like a box of frogs ! X

NattyP123 over 9 years ago in reply to FormerMember

Hi,

Sorry to tag onto your post- I haven't written on this discussion because I didn't have a BOT, I had Stage 3c OC, but I just wanted to reply to your comment about early menopause. I was 40 at diagnosis, and went into early menopause after surgery. I was told lots of horror stories by the nurse about what to expect, and I did suffer for a very short time with acne, hot flushes and night sweats, and I did lose my sex drive completely for a while! But everything settled down and I feel pretty much back to normal. I use gels etc (thank you Ann Summers!) for the problem of dryness, which has helped, and I take Menopace tablets which I hope will be giving me those extra vitamins for my bone strength/ hormones etc. I wasn't given HRT because my oncologist preferred me not to if my menopause symptoms weren't too bad.

I'm now 44 and I've been in remission since April 2013. Good luck for your surgery- is there a nurse you could speak to, or maybe try calling the Macmillan helpline- there's an Ask the nurse area if you have more questions. Don't feel you have to always put on a brave face- you need time to adjust now and also after surgery.

Natalie xx

FormerMember over 9 years ago in reply to NattyP123

Thank you so much for replying ... firstly brilliant news re your remission :-) , my consultant was very insistent on me having hrt until I'm at least 50 ! I don't like taking medication so this concerns me . How soon until i am started on hrt after my op i wonder ? But you have reassured me on a couple of other points and I intend to ring my CNS nurse tomorrow and ask her some questions instead of sitting here stewing like a numpty ! My op is on the 26th of this month so I can crack on with the job of getting better x

NattyP123 over 9 years ago in reply to FormerMember

Glad I've reassured you a bit and also that you're going to call your nurse. You sound like you've got a great attitude and a sense of humour- which is half the battle! It'll soon be over- let me know if you want to know anything else xx

FormerMember over 5 years ago in reply to FormerMember

Hi barfy

I've just got word today 3 weeks post op from septated cyst on ovary removal plus left ovary and both tubes that I'm borderline ovarian tumour .

Told I be offered surgery to remove uterus other ovary omentum and cervix.

In shock and head spinning as wanted to keep ovary.

Can I keep my cervix? I'm 52 will I be given hrt.?

Just got over 1st surgery so big shock as heard horror stories of bladder and bowel problems after.

Minefield..

FormerMember over 5 years ago in reply to FormerMember

Hi Jacqui,

I'm sorry to hear this, and things may have moved forwards for you since you posted the above. I had a radical hysterectomy in February this year (I was 32) and have had no problems with my bladder or bowel since. I was never warned that I may have problems either, so either it's not that common or my oncologist wasn't open with me. Either way, hopefully a positive story to give you some hope.

I'm also on HRT patches that work wonderfully and stop the hot flushes!

Alice

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