Forum Discussion
Lost and struggling
2012 I was diagnosed with DCIS had 3 lumpectomies and Radiation and all seemed good. On my 5 year check I was again diagnosed with DCIS. Now I am 5 years post double mastectomy and recon, and be signed off by all my specialists. Which is a good thing, I know. BUT, a year after my surgery I had to see a specialist for an unrelated matter, this specialist told me there was nothing wrong with me, and “ it wasn’t like you had a real cancer” this surprised me and I feel like all the trauma my family and I went through waiting for results, being told I had cancer, the lumpectomies and then major surgery, and recovery was for nothing. I don’t understand how a medical specialist could say such a thing. I have been told by friends to ignore it but it has been years now and I can’t. Has anyone had this happen to them?
15 Replies
- @Broccoli I hear you having had DCIS myself in 2010, lumpectomy, radiation and tamoxifen. Then 4yrs later in 2015 it came back! in the same spot? literally impossible but it did Stage 2, Grade 3 aggressive, so lumpectomy to remove and chemo for 6 months. In 2017 my post chemo visit the Oncologist the recommended a mastectomy to safeguard myself, it was a very difficult decision, mentally/emotionally. I decided on a single mastectomy/diep flap recon. Im lucky to be 7 yrs clear from my 2nd diagnosis. Every diagnosis is traumatic, every type of treatment is traumatic completely agree.
I do think sometimes people talk in terms of the stages of Cancer, so whilst saying was it just 'DCIS' they should rephrase it and maybe say was it early stage. It is all Cancer regardless, yes DCIS is I think they call stage 0 so its the very beginning. When it is widespread it does require some sort of treatment plan, be it surgery or radiation or anything. It is no different, it still requires treatment. So I hear you having been through both, its all very hard and traumatic, every single part of it.
Keep looking after you! It is a new normal, and survivorship ummm I think the Specialists disregard. Take care
M x - Cancer is cancer is cancer and ANY diagnosis hits you for a 6 - and DCIS, tho less likely to become invasive, apparently 'can' become invasive, if not treated in time ....
How incredibly insensitive of your relative to say that, specially working in the BC Screening area. :(
Sadly, there are some who don't really 'think' before they speak.
We had a thread called "Did they really say that'' - and there are some DOOZIES there!!
https://onlinenetwork.bcna.org.au/discussion/17916/is-that-right-did-you-really-say-that/p1
Take care - I hope you are healing well xx - Having just been through DMX for DCIS in both breasts, and having a relative who works for a breast screen mob, whose mother had invasive breast cancer and has said did you just have DCIS? I fully get you. Apparently, because of not having to go through the further trauma (thankfully) of RX or Chemo, my experience doesn't count. But it does.It counts because it counts.I will not apologise that I did not have to have all the difficult treatments that have been invented. Surgery was enough. It is hard. It is not a cut it off and get on with your life situation. There is mental and physical hard work, pain, exercise, massage, looking in the mirror, - lots and lots of challenges -A person who says otherwise, or that it isn't cancer!! has not experienced those losses and challenges. Or the lingering fear of return.I think the confusion some doctors feel is because they have 'discovered' that apparently for some lucky few, if the DCIS was left alone, it would never invade and metastasize. Somewhat like they know some men can have prostate cancer, not have any treatment and live just as long. Its just that they don't understand why this is, or who is safe to leave and who is not. That's their problem. It doesn't mean that the experience of having part of your body removed is not traumatic. It doesn't mean it was without purpose. It is life saving, that's why you had it done.I really don't understand because if for instance a person had a thyroid nodule removed and it was found to be cancerous but had not become invasive, they would be told they had had thyroid cancer. I don't think DCIS is any different. Its just that because some people can 'live with it' a few doctors disregard it as a cancer.I'm certain this DMX for high grade DCIS both sides has saved my life.Please don't let one person not validating your experience be the comment that eats away. Your power is in your deep knowing and understanding of this experience. And that we all know, everyone of us who has had this violating experience of cancer in our bodies, we all know the truth.
- I would be reporting this specialist to the health care complaints commission. There would be no way a specialist would ever speak to me like that, I work in the health industry and some are just unprofessional.
- Medico needs a lesson in reality
The statement is old school
Dcis is graded O stage this is where the problem occurs with terminology..path usually shows Her negative and hormone positive
Dcis is never to be underestimated
Five years after mastectomy for dcis I was diagonised with metastic breast cancer to lungs..this is a rare occurance but it does occur
All the best - @Toni63
You probably should have said that clearly they were only a little bit stupid? dumb ass!!!
Here's the thing there are some of these incredible creatures out there that do think with all their wisdom (having NO clue being on the receiving end of any sort of cancer) say that they think DCIS isn't cancer.
I went through something a little similar, my first diagnosis in 2011 was also DCIS, I had radiation, lumpectomy and tamoxifen for 4yrs and then had a recurrence in the same spot, so chemo and then Arimidex, a year later I did a single mastectomy diep flap recon and am now 5 yrs from that :) BUT...the radiologist in 2011 had the gall to say to me aaaah it's just cells, its the beginning of what could turn into cancer. Pffft OK!! mind you I had a recurrence 4yrs later same spot?? I should have gone back and slapped him?? and reminded him ohhh it's not really cancer and ummmm DH you didn't kill it obviously with your rads either LOL
Somethings defy logic and really?? you know your truth and what YOU went through...so for the record? it is cancer big small or in between, its all Cancer.
Big hugs!! xoxo
M - I could well imagine that if this dickhead was an obstetrician talking to a patient who had lost a baby at say,10 weeks saying something like this. "Well you can't really say that you've lost a baby....it wasn't a baby...it was just a blob of cells. It had the potential to become a baby, but you were only a little bit pregnant, not really like pregnant pregnant..." Give him the flick and find someone else who will treat you properly. As mentioned by others...ductal carcinoma in situ, means cancerous epithelial cells which haven't yet escaped the ducts and then become invasive.
- If it is not cancer why do they bother with mastectomies and taking lymph nodes 🤣🤣🤣🤣
Perhaps that is their way of trying to say we are not going to die overnight.
@Zoffiel, I did laugh at the thought of you setting their hair on fire ! - I always thought of it as a form of cancer, particularly as the word carcinoma is in the description. Ductal Carcinoma in Situ!!
- Hi.Best wishes @toni63.
Sometimes words can stay with us.I had a mastectomy (2021)for high grade DCIS.I too was told quite abruptly by a specialist that DCIS is not cancer…it is only cancer if it is invasive.Somehow, this seemed so dismissive of everything I, and my family, had just been through. It also made me feel a little solitary….. did I even really belong then in this group for example?
I now think of DCIS as Pre-invasive breast cancer. ..as documented in much of the literature. That keeps the cancer word in there and validates the very real shock and distress of diagnosis, treatment decisions, fear of recurrence.
(Just to say- I also recognise that I’m fortunate to have been picked up early.)Thinking of you and thanks for the opportunity to express my feelings too. Am now ready to move forward.
