I am a 33 year old triple negative BRCA1 cancer patient. I was diagnosed with a grade 3, stage 9 lump a year ago and am now considering my options for preventative surgery. All treatment is complete. I have been offered an oophorectomy or full hysterectomy and a double mx.
My diagnosis came when I was pregnant with my 2nd child (she arrived in March and is well) and I know for certain that I am finished having children - I only planned on having 2 and I have them now So, I am more than happy to get rid of what isn’t needed. I was offered the oophorectomy originally and the gyne man said “we’ll do an oophorectomy and give you HRT so you’ll still have periods!” - he seemed to think this would please me LOL. Anyway, I said that if he wanted to take something he could take the lot as I wouldn’t be needing it now and he agreed. TBH I’m not 100% certain of the differences apart from the obvious so appreciate I may be slightly more keen than I should be. What do you think though? If you had the choice would you just have the lot out?
As for the double mx, I have decided to wait and go for regular checks etc incl an annual MRI (should it get passed by NHS finance!). IF I get another lump I won’t waste time and will have the op but I might never get another lump and don’t want to look any different to other mum’s when on the beach with my young girlies. For me personally this is the right choice - it isn’t just about looks, it’s more about ovarian cancer being much harder to spot early on and a breast lump being easy(ish) to find and treat.
They won’t operate on me until my youngest is 1 so it will be March when they see me again…I’m quite looking forward to it in an odd way! My Onc says he has no issues with me being on HRT…although I have been frightened by reading posts on this forum!
Hi faye
just wanted to wish you good luck whatever you decide You said you were stage 9 at dx I’m assuming that was a typo?! If it was a small cancer + node negative then I would probably do the same in your shoes + just keep a close eye on your boobs. I was going for an elective mx on good side as a precaution but had recurrence straight after chemo so never got that far- but I had a lymph node involved + have just been very unlucky apparently I was very happy with my implant reconstruction so would not worry about looking different. Just looked like a boob job. I’ve now had it removed sadly.
As for the ovary issue I think a hysterectomy can be a bit severe + can affect bones etc so if you can get away with a lesser op, I would go with the ovary removal. Just my opinion though best of luck whatever you decide
love tina x
It is having the ovaries removed that can affect the bones not the hysterectomy. Basically by removing the ovaries you go into menopause immediately and hence why he is suggesting HRT.
The plus side of a hysterectomy is no more periods or other worries such as fibroids etc. If you have any period problems it is worth considering.
I had a hysterectomy via keyhole surgery. However, it is still a big operation and you do need probably a good 6 months recovery time.
I think I would be looking at what the long term affects of HRT are. If as I think they can cause problems with the uterus then I would have a hysterectomy as well. I would also be asking what to expect if I didn’t have any HRT in terms of other risks to health. It’s a difficult balance and I think a bit more information might help you with the decision.
Elinda x
Faye - I had a bilateral salpingo oopherectomy (I love writing that :-)) when I was first diagnosed 2.5 years ago aged 43.
I am now in the unpleasant position of not being able to have a smear because I have something known as vaginal atrophy and am having to leap through all sorts of hoops just to get something as simple as a smear done. Sexy eh?
What bothers me most is the fact that I have a family history of cervical and uterine cancers and I still have those bits in there which are doing nothing productive other than poentially becoming cancerous. Once the ovaries have gone the rest is all pretty useless anyway - and I am considering having it out because I really don’t see the point of having some useless reproductive organs that are now hard to access for cancer screening.
Incidentally I should point out that I am ER+ and am also taking Arimidex. The gynaes and oncs do not know if it is the surgical menopause or the Arimidex or a combination of both that is causing the atrophy.
As for HRT - wouldn’t touch it with a barge pole - eventhough you are TN there is nothing to stop you developing a new ER+ cancer.
Given a choice I would go for having the lot out. What is the point of hanging on to a redundant uterus and cervix once the ovaries and fallopian tubes have gone?
Good luck with it all.
Well the HRT is an issue as the Onc has said that without it he would suggest NOT having my ovaries out. He said it would be ‘unbearable’ given my age! I really do trust him so will be doing what he suggests within reason. I’ll discuss it with him again next time I see him in January (I see the Gyne man in March)
I did a little bit of research online and there seem to be varying views of HRT and breast cancer - especially for BRCA and TN people. I also looked at a few different forums (mainly US based ones though) and they seem to be going down the ‘all or nothing’ route.
What are the additional risks of the BRACA1 gene? Are they cervical and uterine as well as ovarian?
If not (sorry, it’s not a subject I know about) then I’d stick at having the ovaries out. A hysterectomy is such major surgery. While you’d have to cope with menopausal symptoms, at least you wouldn’t have to recover from a much more major op.
I’m waiting to see if the recommendation is for me to have my ovaries out next year - although I’m not BRACA1 my cancer was strongly ER/PR+.
Difficult choice to face. Cancer really does make us weigh up one ghastly experience over another! Still, once it’s done you’ll have a little more peace of mind and that’s worth a lot of temporary discomfort and pain.
I was reading yesterday (online) that BRCA1 gives you an increased risk of Ovarian and fallopian tube cancer; not cervical etc though. If you have an Oophorectomy they leave your tubes from what I can gather so that is making me lean towards having hte lot out.
if yopu have your ovaries out they take the tubes too or they should aand you would get a bilateral salpingo-oophorectomy (BSO) btw salpinges are the tubes.
you sound very similar to me… im brca 2 had bc at 37 ER+ then again at 40 TN.
i just had a hysterectomy 7 weeks ago and going back to work tomorrow.
i originally planned to just have the BSO but after my scan showed endometrial changes from the tamox i decided toy have the TAH&BSO.
having the BSO can be done by key hole surgery it only takes around 15 mins to do the op and you may have to spend 1 night in hosp with 2-4 week recovery.
the TAH is an open procedure with an incision just at the top of the hair line… its a bigger op and takes about an hour and you will get a catheter in and often need very strong painkillers for quite a few days… i had morphine in a PCA pump for the first day and a half… you are usually in hospital for 3-5 days and recovery is anything from 6-12 weeks.
i have also been offered HRT and in some ways its actually better not to have your uterus in this case as you would only need the oestrogen type of HRT which is the kind that isnt associated with a higher increase in BC… with no ovaries plus HRT even the combined kind the risk of breast cancer is less than somebody without a gene who still has their ovaries… my symptoms havent been too bad at the mo (although do have crazy hot flushes) so i havent needed the HRT at the mo but i know that its there if i need it but then i am 42 and know id be pushed to have the HRT if i were your age.
i never need another smear now as i made sure they took my cervix away too so dont have to worry about that any more either.
one other thing that may sway you for the TAH is the theoretical risk of ovarian cancer in the terminal ends of the fallopean tubes where they connect with the uterus… there isnt any reported incidences of cancer starting there so its ‘theorical’ risk only.
the negatives with the bigger surgery apart from the pain and recovery time is that they may accidentally nick the bowel, bladder or ureters… but they should go over all the risks of the op before surgery.
iv not had my mastectomies yet either… like you im continuing with screening at the mo and i have mammos in dec and MRIs in june… although i am on the waiting list for Mx and recon when ever i want them but think i might do it about this time next year as still feel im recovering from this op and want to be fully fit before having another one… although obv if i get another ca in between ill prob just opt to have all the surgery at that time.
I too am struggling with this decision, and wonder if there are any statistics on each option. I guess choosing between a shorter op or niggling doubt in your mind is down to personal choice and knowing what each of us can live with. What makes the decision a tad harder for me is that I had blood clots on the lungs from chemotherapy so worry about a general anaesthetic for a longer time.
from what they said to me the hysterectomy isnt a particularly long op only about 30 mins compared to 15 for the laparoscopy… i was quite surprised as thought it would be longer… it is obviously more invasive… its probably worthwhile discussing this with your surgeon and anaesthetist…
also i was told when i was originally having the BSO that they may have to proceed to an open BSO if they found adhesions when they went in so you could agrue it maybe better just to go for the whole lot at the outset but i think it is a very personal decision… the recovery time for a lap BSO is around 2-3 weeks but recovery from open BSO or TAH&BSO is around 2-3 months.
if you have had blood clots they may want you to be admitted the day before so they can heparinize you and i think in terms of the the risk its actually your lack of mobility following surgery which put you at a greater and prolonged risk as well as from the anaesthetic itself… so the more major op may not be the most suitable option. but it sounds like you need a good chat with your surgical team.
So, I am more than happy to get rid of what isn’t needed. I was offered the oophorectomy originally and the gyne man said “we’ll do an oophorectomy and give you HRT so you’ll still have periods!” - he seemed to think this would please me LOL. Anyway, I said that if he wanted to take something he could take the lot as I wouldn’t be needing it now and he agreed. TBH I’m not 100% certain of the differences apart from the obvious so appreciate I may be slightly more keen than I should be. What do you think though? If you had the choice would you just have the lot out?
I was very happy with my implant reconstruction so would not worry about looking different. Just looked like a boob job. I’ve now had it removed sadly.