I noticed no-one has got back to you just yet Ajah007 but now I've replied our members that didn't get to see your post the first time around will be able to do so now and hopefully those who are in a similar situation will be along soon to share their experiences and advice.

You can also connect with others and join in on other discussions when using the 'search forum' option in the purple bar above.

I'm sorry for how worried and alone this has left you feeling Ajah007 but I want you to know that our community are here for you and will do all they can to support you.

If you feel it may help, you can also talk things through with one of our nurses on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

I hope my reply has been able to offer some comfort at this testing time.

Kind regards,

Steph, Cancer Chat Moderator

Hi ajah007,

I have recently had  a mastectomy for DCIS which was highly ER+ so my oncologist wants to put me on Tamoxifen. However, I too have large fibroids (a grapefruit, an orange and a couple of plums in terms of size - I've a veritable fruit bowl in there!) So I was not happy to learn that Tamox can make your fibroids get bigger - I already suffer urinary incontinence for the second half of my cycle: I can't afford for them to get any bigger!! Until my BC diagnosis my gynacologist has advised that if I can handle it until menopause (I am 52) then they should shrink - and I do want to avoid a hysterectomy! However, I feel very frustrated because my oncologist suggested that I discuss with my gynae, but yesterday I didn't get to see my usual gynae, and it was a bloke who was very rude, and essentially said there is not enough data about the effect of Tamox on fibroids and that my oncologist should know more about it than him.... so I feel like I am being batted between consultants and not sure how I am  supposed to make a decision about chemoprevention!? It's so hard to know what is the best way forward, and I wish that all this had been discussed ahead of my surgey because then I might have pushed to have a bilateral mastectomy. Because a preventative mastectomy is surely a better idea than a hysterectomy which is much more traumatic, and was my gynae's flippant suggestion yesterday! Sorry that this has been more of a rant about not knowing what to do either.... it is so frustrating that there is no joined up thinking in British healthcare - I have a 30 year history of issues with oestrogen yet noone has ever been interested in joining the dots - just me. Having BC is scary enough without feeling like you have to make ill informed gambles about your future.... so if anyone reading these posts can point us in the direction of journal articles or any research that might help - please post! thank you - and good luck ajah007

Hi,  i have had simular experiance to you so i would like to share it with you. I had breast cancer in 2017, i was 53, i was suppose to take tamoxafen for 10 years.

After 18 months of taking it i had a heavy bleed, i was sent for ultra sound and internal vaginal scan, my results came back 7mm thickning, i was sent for a hysterscopy and biobsey, i had thickening but all biobseys was normal.

6 months later heavy bleed again, same procedure again , hysterscopy showed thick lining of 24 mm i had two large polyps and biobsey showed endometrial hyperplasia without atypia. I had a polapectomy at the same time .

They wanted me to take progestron to reverse the damage but my ongolugist wouldnt allow it due to my breast cancer being hormone related.

I was told to stop the tamo and have a biobsey in 6 months, i had that in june and they said my biobsey was normal and i have been discharged unless i have further issues.

Gooid luck 

Debbie

Thank you for your reply! 
Hmmm, so maybe quitting tamoxifen is a way out of this? I'll definitely talk about this with doctors! 

They told me that it was tamo that was causing the problem, some people have no problems, but unfortunatley i did, they want me to start letrozole now for 18 months and maybe along side zoledex so i can say i have done 5 years hormone therapy, i have thought hard about this decision,  but when i was on it at the beginning of my journey some days i could hardley walk down the stairs with the pain in my hips etc,  letrozole can cause bone issues, so they all come with side effects, so im opting not to have it, i would have to be very unfortunate to have a reocurrance again, ive just rcentley had mri for my back as ive been struggling a while with it, there not to worried there are a few moderate changes but could be ware and tear, how ever i was shocked when they said i had to have an urgent ct scan as mri picked up a concerning area in my stomach, so now the rollcoaster starts again.

Sorry for long post and going of track, sometimes its gooid to chat and get it all out

Debee

Hi, Ajah007 & Wenamaroo, 

Oh my, you have both been through the mill, how are you both now? We can not be the only ones who have experienced / are experiencing this ?

I feel both of your agnst & pain, I ended up having a single mastectomy, & also have large fibroids, and yes, I too felt like I was having non conversations between departments. 

I ended up seeing a private onco-gynae through Spire hospital (pay as you go - around £200) who advised a hysterectomy with Salpingo & oophorectomy. (NHS said next gynae appt was 6 months away). I'm not rich, I figured it was better to use my savings & xmas bonus and get an answer ...

Yes I too have read that Tamoxifen can cause uterine cancer and make any gynae problems worse. As both of my Grandmothers died from cancer, one breast & ovarian, the other cervical & everywhere, one Great-Aunt had breast cnacer then had a stroke. 

It so feels like running the glauntlet, through a mine field whilst being chased by the wolves and then having rains of arrows all round. 

I have also read that keeping Vit D levels good can help reduce fibroids.

bmjopen.bmj.com/.../e038709

The British Firbroid Trust has some information, although the links between Fibroids nad Breast Cancer ae not mentioned.

www.britishfibroidtrust.org.uk/

This may be helpful to ...

www.fibroidfighters.org/.../

I'm already through the menapause, however they haven't disappeared ...far from it, very symptomatic, ... and I take tumeric, green tea, and all the nice yummy green veg :) as one neighbour said to me " You have the healthiest lifestyle of anyone I know. " 

It would be great to hear how you are both doing? also and what your decissions ended up being? 

 I hope you are both well & fit, and of course enjoying life to the full.

Any tips gratefully received btw.