New Invasive ductal carcinoma grade 3

Diagnosed with breast cancer DCIS/LCIS
21

Hi @1942ao

I am so sorry you are finding yourself in this situation.

I too have Grade 3 DCIS. I had my first surgery in January, no clear margins. My second surgery in March, superior margin was involved (not clear). I have just had my third surgery 2 weeks ago and have been told if they don’t gain clear margins this time, I will need a mastectomy. The worst part for me is the wait for the results. After my second surgery, I had to wait 6 weeks for results! They have said I will need radiotherapy.

Have you tried calling the Breast Care Nurses on here? They are amazing and have really helped me.

I am sending you love and hugs :sparkling_heart: xx

1 Like
22

Thankyou for your message. Sorry you’re going through so much and I truly wish you the best. Iv spoke with them Yes but it’s all the same response, it’s a hard decision but it’s got to be about how I feel and what’s right for me… I simply don’t know I’m qualified to make the decision no matter how much I read. Cosmetically I know this will impact my mental health but can I spend my days worrying if all the cancer cells were eradicated by radiotherapy boost… I find out on Wednesday also whether I need chemo and I don’t want to delay treatment xx

23

Thank you for your good wishes.

Have they offered an immediate implant reconstruction?

I agree with what you say about us not being qualified to make these decision, we just need the safest option to eradicate the cancer.

Sending you love at this hard time xx

1 Like
24

My Origional surgery 4 weeks ago was lumpectomy with mammoplasty… iv been told if I opt for reexcision I will be left with indentation and the severity will be unknown until she operates again… no talk of any other correction as a lot of skin was removed and I am only small…

I think from my own research iv come to the conclusion and the info iv received on this thread they need to make the decision with my best interests at the forefront… they have a lot more knowledge and experience and a duty of care xx

2 Likes
25

I agree entirely. We need to trust in their expertise.

Please let us know how you get on next week :two_hearts::two_hearts: xx

1 Like
26

Hi 1942ao
(Sorry to be a bit late to the party!)

I was diagnosed simultaneously with invasive mucinous bc in right breast (self-detected pea-sized lump) and following rigorous tests on my always-been-lumpy, dense, cysty left breast … which were driven by my diligent surgeon … was found to have the more threatening, lurking, hitherto undetected invasive lobular bc (despite annual mammograms and a few ultrasounds).

Due to strong family history (including one of my 2 affected sisters who had 2 recurrences of new primary bcs), it was a no-brainer for me. I told my surgeon “double mastectomy please, and be sure to scrape away every last bit of breast tissue you possibly can” and I decided to stay flat for simplicity’s sake.

Only one lymph node was found to be involved (NOT a sentinel one, but one further afield, spotted by my ever-diligent surgeon again, during surgery) but that had extracapsular spread, which I take to mean the cancer had broken through to the outside surface of the node, thus suggesting a risk that cancer cells may have escaped into surrounding tissue, my lymphatic or blood system. Again, I opted for the more radical next step of axillary full clearance surgery over radiotherapy, which is attacking blind. I just wanted to KNOW if they could physically FIND any other cancerous lymph nodes. Happily not.

Oncotype DX score came back low enough to escape chemo recommendation, but I was prescribed radiotherapy (5 sessions over 7 days - across a weekend break). However, with a 5-month wait (backlog issues were already a thing, following the wave of self-referrals / positive diagnoses that occurred, once the Covid fear of attending hospitals had calmed down), I am left with the niggling worry that radiotherapy of the tumour area was too delayed to have caught stray cancer cells before they travelled.

I tried hormone therapy but found it too debilitating so gave up after 10 months.

SO … My message regarding radiotherapy is, can you obtain any guarantee about how quickly they will commit to administering it, once safe to do so post surgery ?

27

I can’t answer your question but I did want to remark on the above statement. Can you plug in your statistics into Predict to get an idea of how needed your endocrine therapy is? Considering your extranodal spread I would think endocrine therapy is desperately needed for optimal prognosis. And there are a few different types. Another one besides the one you started with might be more tolerable in regards to side effects.

1 Like
28

Thanks for your interest, Kay0987.
(Prompt radiotherapy wasn’t a question about myself. I was asking 1942ao if they could get any reassurance for themselves.)

I will get around to trying the new Predict tool at some point. I also need to gather the strength to tackle yet another discussion with a breast cancer specialist (probably not an oncologist next time; experience has left me with a low opinion in general) as I need to better understand the implication of extracapsular spread / 1 node involvement only, as well as other aspects of my surgeries and adjuvant therapy.
I am yet to have a satisfactory all-encompassing discussion about my overall position, and I’m almost 2 years post surgery now. Nobody I’ve consulted has had the time or patience for a lengthy, in-depth, thorough conversation.

I don’t know about endocrine therapy being ‘desperately’ needed. There’s a case for it in certain situations, of course, and mine probably is one with ER+8, but there’s also a case against it. I am unlikely to be scared into taking the drugs.

I will emphasise again, it is not the common side effects I fear so much as the possible serious/fatal damage these drugs could do to other functions of the body.

Aside from that, the aim of all AIs and Tamoxifen is to either erradicate oestrogen or render it impotent, and that it what causes the body to suffer in numerous ways, not simply the specific recipe of each drug.

1 Like
29

So sorry to hear your journey and I truly believe from what you’ve said you did the right thing…
I decided to have the surgery which took place yesterday. My onco was 26 therefore i need chemo starting in 4 weeks approx…
I will have 10years medications to follow of which I know nothing at this stage…
X

30

Hi there, hope your well. I opted for surgery and am now having in a few weeks time x

31

Thanks for replying. Hope your surgery heals well and Good Luck with your chemo. x

1 Like
32

Thank you for the info! I’m in the U.S. My surgeon definitely said 2 types of cancer: invasive and DCIS (ductile carcinoma insitu).

33

Hi,
From my pov, I certainly hope RT works to kill any cells as my tumour was also surrounded by DCIS which went to zero margin in 2 directions ( usually like 2mm clearance for DCIS). Not offered further surgery as basically it went to end of breast tissue and up to skin, so there was no more to take. Got lucky with Grade 1 though so not offered chemo or oncotesting despite being Her 2 also.