In February 2006 I had WLE for LCIS. Following surgery I was told the margins were clear and needed no further treatment. I’ve had 6 monthly mammograms since then. Last July my mammogram was clear. In January my mammogram showed “changes” so I was called in for Core Biopsy which showed all sorts of atypical cell changes including radial scar, adenosing sclerosis… So my Consultant decided to do another WLE to get a definitive diagnosis. This was performed on February 29th and the Pathology report has showed DCIS in the margins. It is ER positive, PgR positive and HER2 positive. My Consultant is recommending Mastectomy as she feels that my breast may well develop an Invasive Cancer in the future and that she’s not sure how much of the breast is affected by the DCIS. It seems very drastic to me to remove my breast. Does anyone else have experience of similar surgery for a similar diagnosis? Has anyone else undergone any other form of treatment for this?
hi thetrumumshow
i was diagnosed last july with dcis,due to family history of breast cancer i was advised to have a dble mastectomy.
i had that 8 weeks ago and i feel fine,so glad i did it as now my future is looking good to me!
i had a tram op so had a tummy tuck to.hope that helps.
zsazsa
Hi thetrumumshow
I was diagnosed last August with DCIS, was recommended a mastectomy and immediately reconstruction, I opted for diep recon. I did do research and went ahead with mastectomy and immed recon. Waiting to go in for lipo and new nipple on recon as it is too big compared to good boob. Feel absolutely fine, delighted with my tummy tuck and new boob. Been told by onc as far as he is concerned the dcis has gone and no need for any chemo or rads.
Diep is longer recovery and I did as I was told and took things slowly. I am now back to normal except I have to be aware of left arm as I had 14 lymph nodes taken as a precaution, they were all clear. I do yoga, go to the gym, walk miles each day and do light weights. Most importantly because I had mastectomy I do not worry every day about the cancer, maybe I am naive, I will have regular checks.
Hope this info helps you and I wish you all the best. I can remember not knowing what to do or who to ask. I did have a good long chat with my plastic surgeon re the recon and this was very helpful. Once you have made a decision one way or the other you will feel better. Good luck.
Linda
Hi
I was also dx with DCIS and due to family history also decided on the dbl mastectomy. Still waiting for the op date.
M
x
Thanks for all the comments and info. I’m just so confused. Immediate reconstruction sounds the way to go but the thought of having a really major surgery scares me. How long does the op take? What’s the post-op recovery like? And how long? I’ve had no lymph node sampling is this normal? Also I’m really scared that I’ll need hormone treatment and that it will ruin our sex life. I consider myself really lucky that after 25 years of marriage we still have a wonderful sex life and I’m not ready to give it up yet!! Does anyone esle feel that way?
Giving up my sex life was my biggest worry too. but I found everything was in full working order despite tamoxifen which did give me lots of hot flushes. I slept nude for two and a half years after a long time in tshirts and pyjamas in the past. so I expect that improved my sex life in a way
I found men quite keen to see how my breasts looked too. Went to india on my own, met a lovely accountant aged 32 in cochin who worked in the bangalore stock exchange and he invited me to share a room with him and go round india with him. i was 50 at the time so although I didn’t take him up on the offer, must have been mad it was very flattering to be asked
onward and upward
mole
Hi the turemumshow
I had a mastectomy and immediate recon June 2006. The type of recon you have depends on many things and you need to talk to a Plastic Surgeon about it. I had a DIEP and it took 6 1/2 hrs but you don’t know anything about it, it just seems a short time. It takes two or three days to be walking around and I found it was more uncomfortable than painful. If you can have an immediate recon I would do it because the result is far better. I had all my skin left apart from where the nipple was. I had a sentinal lymph node biopsy before the op. They inject a radioactive substance into your breast, sounds worse than it is, and then, under general anesthetic, they follow it to the first lymph nodes it drains to. I had two removed and as those were clear they figure the rest are ok. I was told that because I had DCIS and only a small amount of microinvasion I didn’t need hormone treatment. The breast surgeon considered the risks from it were worse than the advantages.
Hope all goes well for you
I always had a bit of a dryness problem from time to time pre breast cancer and found that ky helped a bit. However, tamoxifen gave me the opposite of vaginal dryness - I had more discharge. Some women definitely do get this though and a few things seem to help - replens, sylk and vagifem I think it’s a sort of vaginal ring thing with minimal oestrogen just acting on the vaginal area.
Mole
Thnaks Terri. I’m getting my head round it a bit more now. My worry is that when the breast is removed, presumably they do another Histology report, they’ll find invasive disease elsewhere in the breast.
hi thetruemumshow
i had both boobs removed and imm con 9 weeks ago with diep flap i have not regretted a thing,the op lasted 14 hrs! due to a wonderful doctor who wasnt very happy with a vein so kept me asleep and re threaded it!
its the best thing i have done,im no longer worried about the future.they removed 4 lymph nodes and all were ok.am going back to work next week.none of it was painful just uncomfortable at times.good luck.
zsazsa
Hi zsazsa.
Where did you have your surgery? I’m under the Royal Marsden.
hi thetrumumshow,
had my op at east grinstead,what a wonderful place!
when are you having your op?
Hi the trumumshow
I too have DCIS and have to have mx and recon and boob reduction on good side on the 10 April I have to have the expander tho and am not looking forward to this I wanted the Diep but my health apparantly wont stand the long op, I dread having to have this thing filled over a period of time wanted it over and done with my boob as taken over all topics of conversation.
Im being ‘done’ at Pinderfields in Wakefield anyone else been there?
good luck
Jo
Hi zsazsa, I don’t have a surgery date yet. My Consultant has referred me to Mr Carpenter at Bart’s for a 2nd opinion. Not because she thinks he’ll say anything different but she said it’s sometimes easier to make the decision once you’ve spoken to another expert.
hi trumumshow
hope you have had a good easter.
glad you are seeing another doc it will help im sure.im so glad i had the op,i dont wake up everyday thinking about it now.it is a lot to put yourself thru,but remember to take it easy and rest as much as poss.my arm aches sometimes but it is bareable.
have you got dcis?i didnt need any other treatment.also been married 27 years,sex life good too!
zsazsa
Hi Zsazsa, Had a great Easter, thanks. We spent it at the Scole Inn in Norfolk in a wonderful room with Four Poster bed! That Four Poster bed rattled a bit!!! Yes I have DCIS. I’m still waiting for my 2nd opinion but worried now as I’ve developed a lump where I had the WLE.
maybe you should talk to your bc nurse?
glad you had a fun weekend!!!
zsazsa
Hi Zsazsa, Spoke to the BC Nurse this morning, she said they would consider this normal as I’m only 4 weeks post WLE and it’s probably fluid. Said only to worry if it gets bigger or I develop a temperature and feel unwell.
hi trumumshow,
thats good at least you wont worry so much now.
good luck when you see next doc,
let us know what you decide to do.
take care x
zsazsa