Hi all
I have been lurking on the board for about 18 months. Have probably made minor comments here or there, but have largely kept myself to myself. Why, you ask - I’m not really sure, is the answer - as I have found all of your comments and stories very helpful. Anyhow, MacMillan sent me a little prompt this evening, so I decided to tell my story, in the hope it may help someone.
In 1998 I found a breast lump in my right breast; I was just shy of my 30th birthday. I went to the doctor, who took my concern very seriously and referred me to Guy’s Hospital in London Bridge, where I was lucky enough to find my way into the department of Professor Fentiman. Various examinations led to an wide local excision for ‘atypical ductal hyperplasia’. After the operation, I was entered into a study, which meant I started having regular mammograms from the age of 35. At this point my aunt (mum’s sister) had lost a breast to breast cancer at the age of about 55, so I was very nervous that I would go down the same route; hence I was extremely diligent in attending follow up appointments. I always had a feeling that one day it would be me!
When I was 45, my older sister (49 at the time) was diagnosed with breast cancer. For whatever reason, she had kept her fears to herself and by the time she was diagnosed, the cancer was already in her breast, lymphs and bones. She was admitted to hospital immediately and had a titanium rod inserted into her femur, to prevent her femur from breaking in case of a fall. She was very sick indeed! Without going into to much detail, she lasted another 15 months before she died. I went to an extremely dark place and truly thought I was losing my mind!
After my sister died, I went to my GP and asked for a thorough review of all things ME! He was very understanding and referred me to the breast clinic for mammogram, physical examination etc. Everything was fine.
On the day of my 50th birthday, I started my final period and entered the menopause. I had a hellish time with constant hot flushes. Literally one would stop as the next one started. This went on for a year. I was a wreck; still smarting from the loss of my sister and dealing with this new version of me (don’t mention the 10kgs that suddenly invaded my body!). 15 months after my last period, I had a post-menopausal bleed and once again my body went nuts. I saw an amazing gyneachologist, who sent me for a hysteroscopy, which thankfully resulted in benign changes only; this was in March 2021. The gyneachologist suggested I ask my GP for a mammogram; I knew that my next one would be due in September 2021, so I thought I’d wait for that appointment.
Due to Covid (blah bla bla…), my mammogram was postponed to January 2022. I went for the routine mammogram and had a call back. As I mentioend before, I’d had several mammograms since I was 35 and this was my first call back, so I was not at all concerned. Lots of people get called back…
The call back appointment resulted in being diagnosed with intraductal papilloma. This was removed by suction and, of course, the removed bit was biopsied. The biopsy showed low, intermediate AND high DCIS (ductal carcinoma in situ)! The DCIS was removed in a breast sparing operation, which was followed up with a week’s worth of intensive radio therapy.
The physical part of various operations was horrible, but my goodness - the mental stress was so much worse. I have an extremely lively imagination and man oh man, it went to town!
I am now 12 months post radio therapy. My skin is still ‘tanned’ and I suspect that is a souvenir I have for life, and thankfully the brain fog, exhaustion and extreme (all body, not like the menopausal ones) hot flushes are abating. I am beginning to find myself and getting to terms with what my poor body and soul has been through.
This year, my 88 and 90 year old aunties were both operated for breast cancer. Despite the operation, radio therapy and reassurances by the amazing oncologist, I’m quite certain I haven’t seen the last of this bloody disease, but I feel that I now have the experience and determinedness (is that even a word?) to deal with it head on, if it were to rear its ugly head again!
I’m not really sure what I wanted to say with this, but I’m going to press send all the same.
Have a good sleep all.
Thank you so much for your message. I’ll deal with ‘my side’ of your post first.
I am really glad I pulled myself together and wrote that post. Now I see it written down, I realise that it is even more to go through than I imagined. I didn’t even mention the fact that in between the rest, I had to have half of my thyroid removed (a fortnight before my sister died!) and was treated for polymyalgia rheumatica (on steroids for a year), some five years later. Oh, and I lost my dad the day after the DCIS diagnosis. I need to have a long hard look at myself and realise that IS a lot to go through. Thank you for telling me - it has already made a difference!
Now to you! Good luck with the BRCA test - I hope it is negative, so you don’t have to go through additional operations, stress and side effects. I too would be the scared little 8 year old girl in your situation. Big hug for ((((((((((you)))))))))). I am so sorry about your mum and your gran. That must have been a very scary time for you all. I too am one of five (my sister, then me and then three boys) and you and I are just a year apart in age, so many similarities. The thought of all of us growing up without our mum (or even my grandma!) doesn’t bear think about! Poor you and your siblings!
I am glad that you are otherwise healthy, as it will help your recovery a lot. Listen to everything the doctors - and particularly the nurses tell you. The nurses know stuff and they know where you get help with all sorts of things.I read so much on this board in connection with my diagnosis, operation and radiotherapy. The information I gathered here was worth its weight in gold.
I broke down and cried a gallon in from of my wonderful oncologist. I told her about my sister, the fact that her husband had prostate cancer after she died and that mine had the same five years before my diagnosis. ‘That was your sister - not you’, was her reaction and of course, I knew she was right - just like your surgeon is. 
Have you been offered counselling? If not, ask the Macmillan nurse and they will refer you. Until then - use this board!
Allow yourself to be scared and pissed off, cry, swear and say ‘it’s not fair’ as much as you need to. Cancer is like a stalker that just won’t leave you alone. The amount of times I dreamt of saying ‘no thanks’ to the diagnosis, only to realse that isn’t an option - so I got stubborn (not so very difficult for me. ) and ‘fought’. I know a lot of people don’t like the ‘fighting talk’ about ‘fighting cancer’. For me it’s like a battle of the wills and I shall be damned if I let this bloody disease (the grandkids know that you are allowed to say ‘bloody’ when you’re talking about cancer and Covid!) beat me!
Enough of my talking (once I get started, I just can’t stop!) for now. Let us know how you get on with your various tests.
Lots of love
Tina
