BC 10 years ago (age 29) now over 20cm growth / uterus

Hello :) - sorry this is a long one so please hang in there....

I was diagnosed with Breast Cancer (IDC) nearly 10 years ago age 29. Had the works...double mastectomy, expanders, breast construction, FEC chemo, rads, 3 years of Tamoxifen (stopped because fell pregnant with twins). I have 5 children, 3 before Cancer and the twins after. All has been fine, except recently my implants have caused issues and have capsulated so going to have a DIEP procedure soon. 

Anyway, roughly 3 years ago was seen by gynae and told I probably had Adenomyosis after some tests due to very heavy periods, depression at certain times of month etc, was told to consider taking Tamoxifen again of which I declined. Then about  8-10 months ago I started to 'notice' my uterus as in could almost feel it. January this year I visited my new GP after moving and he said he would refer me to Gynae consultant (he didn't even assess me). Months passed and had heard nothing and it turns out the GP did not know how to use the new referral system and didn't do it properly. I was not a happy bunny. 

Last few months I can hardly fit into my clothes, very aware of how bloated I look, get bad water retention, sweating, constant loose stools, exhaustion, heavy periods with clots (sorry TMI) to the stage where people assume I am pregnant of which I am not. Had my first appointment last week with Gynae and when she examined me she was quite shocked. the top of my uterus or the mass is above my belly button now. She arranged for me to have MRI next week and vaginal ultrasound and discussed the fact that I would definately be looking at a full hysterectomy, cervix etc. I think due to the fact I have had a few CIN3 / pre-cancerous in smears too. 

So I am at that stage I was almost 10 years ago and feeling pretty stupid that I didn't kick off and be more forceful about it. Hoping it is all benign obviously but have a horrible feeling it is not. The mass is large but doesn't hurt like most endometriosis / ovarian cysts tend to do. It's just heavy, pulls and even laying on my back to sleep is causing issues. 

The awful thing is my lovely aunt has just been diagnosed with Lung Cancer two days ago and I am the only living person she knows to have beaten Cancer. Have to keep this thing quiet from her.

 

Thanks for reading! xx

  • Hello, I was reading your post and felt that I had to comment.  I have had exactly the same symptoms as you re Uterus, Periods,Clots, Bloatidness, a Mass and Fatigued. My uterus was the equivalent size of a six month pregnancy.  I could feel the Mass when I pressed down on my stomach. I am 51 and was advised by my Gynaecologist to have a Full Abdominal Hysterectomy and Ovaries removed.  I am now 4 weeks post op and have just received the news that both Tumours were benign. I am hoping this will be the same  for you.     

    Best Wishes xx 

  • Sorry I forgot to say that my growth was approximately 17cm.  Hope this helps.