HI
Like so many women here, I have been diagnosed with DCIS - routine (first) mammogram, call back for further tests because of microcalcifications in both breasts, and I got my first biopsy results (from the right side) on 10 May - in some ways it has all gone so fast and in others it feels like I’ve been dealing with this for months. The results showed high grade DCIS with a 50/50 chance it may have started to spread. There followed further core biopsies - one further along on the right and one on the left side - these came back as more DCIS on the right and atypical ductal hyperplasia on the left leading to two VAB’s on left - the one near my armpit showed normal cells and the one nearer my nipple the ADH. What the surgeon wants to do now is a right mastectomy with sentinal lymph node sample (although all the staff keep saying it won’t have spread) and a surgical biopsy on the left at the same time just to make sure they haven’t missed anything. On top of this, earlier this year I had major abdominal surgery to remove large polyps (benign growths) from my small intestine and am now being investigated for a possible underlying genetic condition which causes these polyps and increases risk of certain cancers.
At the moment I’m dithering over two things - to have an implant recontruction or just a mx (I’m 49, slim build, small breasted anyway) as I don’t want to put my body through more surgery than necessary but don’t know how I’ll be with a prosthesis. And should I just have a mastectomy on both sides - at the moment I can only imagine worrying, worrying, worrying about whether the ADH will turn to cancer and think the doctor etc must think there’s some chance of this as they are doing so many biopsies. I have talked to a breast care nurse about this but she just said its a big decision.
thanks for reading about what is going on for me - any thoughts or helpful experiences from people who have been in similar situations most welcome x
Hi lizreb,
Welcome to the forum but I am sorry that you have found yourself here.
Our users are very supportive and I am sure they will be along soon to share their experiences.
In the meantime please do call ourhelpline at 0808 800 6000 who will be able to talk you through some of the questions you have and decisions you have to make while offering a friendly ear. The opening hours are below.
Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm,
Saturday, 9am-1pm
Best wishes,
Lizzy
I too had dcis in right breast and had mx February due to it being widespread. Due to being big busted I am finding it difficult with the balance and so have decided to have second mastectomy on Wednesday this week.
Any questions you want to ask, please feel free xx
Hi, I see you posted this a while ago so may have made a decision by now.
I am 32 but was diagnosed with DCIS when I was 29.
My DCIS was very widespread but after tests showed it had not spread to my lymph nodes and was all DCIS and was currently non invasive.
The surgeon recommended a MX just to be on the safe side. At 29 this was a scary thought especially as the consultant said it was non invasive and had not spread so at the time wasn’t causing me any massive issues.
After a lot of thought I had the MX with a reconstruction. The surgery wasn’t great and I wont lie it was upsetting however it turned out to be the right decision. Once they tested the removed breast tissue they found that in actual fact there were small tumours that had spread and for whatever reason had not shown on the mammogram.
It was a scary thought that if I had not had this operation they may not have found that until it had spread and grown.
I hope this helps in your decision, sending hugs xx
Hi, it’s annoying to hear the staff forming an opinion on the results, they don’t know and yes it’s good to be positive but nobody knows until the results come back. That said I don’t think you should worry because it sounds like if there was anything else it would be caught in good time. Try and stay positive and hope the operation goes ok.
I had a blood test for any genetic causes but won’t get the results back till September x
I am new to forum,had a no choice mx dec 15 (due to being small breasted v cancer size) and had no option of immediate reconstruction due to the surgeon suffering from RSI.
Like you Lizred I am 49, slim build. I am an enthusiastic runner amongst other things.
I’ve kept fairly fit through chemo (now on herceptin) by keeping running etc
I can pretty much do everything I did before cancer; being small breasted has advantages (for once) for a unilateral mx I think,bigger breasted girls have told me they feel more ‘unbalanced’. My scar is pretty neat really (and getting better all the time)and where as I would obviously rather all this hadn’t happened have got used to it over the past few months. My husband has been great throughout. When I talked to the surgeons last week re possible reconstruction they said that they were limited for sites ( I had a curved spine as a child, so back out) and there was a reasonable chance that surgery would reduce the quality of life I have fought so hard to keep.
So I came away with no plans (apart from maybe a monster tattoo!). For me I am glad (if that’s the right word) that recon was delayed.
It is sometimes a pain swapping the tit between bras but that’s all. Tried a bikini on the other day and it looked ok. I’m fond of my remaining breast and will do my best to keep it !
I think we want somebody to make the drastic decisions for us but they can’t. I hope everything is going well.
X