Hi there I am new here, and was diagnosed in July, I have had 2 ops and they found an invasive tumour that has been removed, but still continue to find more DCIS after 2 excisions, (they only found the tumour when they did Histology) so thats gone now… I have to go to hosp tomorrow to discuss whether to have a masectomy! Not sure if they will continue to find more if they do another excision… any thoughts on what I should be asking when I go tomorrow. Will a scan pick up the DCIS as they said they were not able to detect on the mamogram as it was quite small, but that does not mean to say its undetectable at this stage because its early… the DCIS is high grade and so was the tumour… Really would love some feedback as i dont want to make the wrong decision. I feel as if I dont have much of a choice and i am scared…thank you. I am only in my early forties and confused by all the information.
Hi mfdoll,
Welcome to the BCC discussion forums where I am sure you’ll get lots of good support from the many informed users of this site. While you ae waiting for replies could I suggest you give our helpline here a ring and have a chat, if you have time before your appointment today, as they too are here to offer you support through this. Lines open at 9am until 5pm today (Mon-Fri) and Sat 10 -2. Calls are free, 0808 800 6000.
Take care,
Jo, Facilitator
Hi mfdoll
I cant advise you what to do as Im no specialist on the subject
I am 41 and was diagnosed this June. (Picked up as calcifications on a mammogram). I went straight for a bilateral mastectomy (I have a strong family history of b.c ) They found a smallish tumour 1.2 cms with an area of DCIS around it (1.9cms) but then in my supposedly unaffected breast they found a 6 cm area of high gragde DCIS that had never been mentioned to me prior. Nothing was found in my lymph, and Im now having chemo just as a kind of back up I think really and due to being quite young.
The info can get confusing so Id say deffo take someone with you, I struggled to take the info in somewhat!
It is scary you’re right and I still feel the same now.
If you want to know anything more please p.m me, Cant promise Ill be much help mind you!
Good luck with your decision making
Mandy x
I was told I had a tumour of roughly 2 but after WLE it showed 1.5cm IDC plus 3cm of DCIS. They gave me the option of another lumpectomy but I’ve decided to have a mastectomy because I would never be able to escape the idea that some precancerous cells remained.
Its a tough decision!
PS I’m only 30
Hi mfdoll
I’m relatively new here too. I found a lump and was diagnosed in May and had a lumpectomy and sentinal node biopsy in June. Because the cancer had spread to the lymph node, I had a second op in early August to remove the lymph nodes. Since I was having a GA, he took a bit more boob tissue out as he only got 1mm clean margins around the lump, and he prefers 2mm. When I went back to see him for the results, he tells the good news is that the spread to the lymph nodes was just to the one, and the others were all clear, but they found DCIS in the tissue from the boob. He needs to take more boob tissue. He thought he would have to do a mastectomy, but upon examining me, thought he would do another segmental instead. I rang the breast care nurse (who is wonderful and patient with my frequent and numerous questions each and every week) and said to her, “the surgeon said I had IDC (Invasive Ductal Carcinoma) and now he is saying I have DCIS”. She told me I have had both. I was gob smacked. Why can’t I just have the one cancer, why do I have to have both? But I have since been advised that it can be common to have both. I am 45.
Anyway, the third op was towards the end of August and the results were…more surgery. No messing around this time and I had the mastectomy on Thursday last week. I wasn’t really given a choice, but I was not too fussed about it. It’s only tissue and does not define who I am. I could not have immediate reconstruction because I need to have radiotherapy after the chemotherapy, because of the IDC, and he said the radiotherapy would ruin the reconstcution. I can therefore have reconstruction after all the other treatments have finished. I think I will still have the reconstruction as I do like to have a cleavage.
Please let us know how you got on today.
Hi there, I seen the B care nurse today and she went through all possible masectomies…not nice but reality really. i may have the option of having a third WLE and radiotherapy, the only worry they have is that the previous WLE and DCIS was below the nipple and the new DCIS is at the top on the superior margin and it may cause the boob to drop and dent leave it looking (not so good) and if there is no DCIS at the third attempt then I am left with a (not so good boob) but will probably still worry about it returning. The masectomy would sort of ensure that it was cleared (inflated saline one) and i would not worry. I am not sure about the statistics of it returning if I went for the 3rd Excision and then I would be faced with Mastectomy. The nurse is going to speak to the consultant to get a blunt view of what would be the best option for me. thank you for all your comments they really help.
Kerry how do you feel now after making that decision?
Mfdoll
HI there, I had surgery back in 2010 - I had lumpectomy first and then cos of size of lump they recommended MX - maybe cos i am 50 and in long term relationship but in the main its been fine - no plans for recon - sometimes on hols on the beach with swmiming etc its a pain, and shopping for clothes is a bit different - I miss my cleavge more than my breast - but all in all its fine - just different …altho I did get a shock every time i showered for about the first 3 months!! Eventually my silly old brain adjusted to the reality of my new body…
best of luck
N
Hi there, thank you for all the information you have provided, it still makes the decision hard but easier to know I am not alone out there… it’s such a good site for support and I wish i had looked at it earlier in my diagnosis; but i really did not think I would be here at this stage.
I will consider my options very carefully; ensuring my health is first priority and go from there.
I will keep you posted…
Thank you all.
xxx
Hi How are you mfdoll?
Mandy x
Hi Mandy, I am ok, been to see consultant and opted for the masectomy:( not what I want but when I look at the choices there is not much left really. my breast is not going to look good after a 3rd excision so this is the best option. Also the chance of it re-ocurring is higher and I dont want to go down this route in a few years; especially if i can sort it now. I have chosen to have the breast reconstruction at the same time and having the breast expander. Going back on Wed to be measured etc…will keep you posted.
x
Hi
I’m glad you have managed to come to a decision, even though it has been a struggle. I hope the op goes well for you. Like I said to you before it did for me, so I will keep my fingers crossed for you
Best wished
Mandy xx
Hi having my mx tomorrow, so I will keep you posted, not sure how to feel but will be relieved when i wake up and some of the healing process will begin …x