dcis recurrence after 2 years

vandoulini

Hello, I am writing on behalf of my mother. She is 50 years old and 2 years ago she was diagnosed with dcis grade 3 with 0,1 cm invasion. She was negative pr/er and c-erbB2+3 the last one I dont know what it is. Does this mean she is triple negative? At that time her treatment was lumpectomy and radiation. Her surgeon advised her to have chemotherapy but she got more opinions from oncologists and they told her that the protocoll does not advise chemo in similar situations. So she didnt. Now since April we have been in a roller coster since she had a mammogram and showed microcalcifications at the same point where she had her surgery. She went to her surgeon and told her that it's probably nothing and to have a mri in a couple of months. One month later she got a second opinion from another surgeon and told her to do a biopsy with mammotome. The results came back and it is dcis again grade 3 and pr/er - luckily no invasion. She opted for a double mastectomy even though her oncologist said that she does not have higher risk for the other breast. Now she is afraid, she is strong enough but sometimes she is a wreck. I am more scared than she is. I am 31, single with health anxiety issues since i was a child.Do you think she is going to need chemo this time? And should i pay for braca testing? It's not free in my country.

zayb

Was the second diagnosis pure dcis? If so, I doubt they would give her chemo. She wouldn't get chemo for a micro invasion two years ago, only if she had invasive cancer this time.

vandoulini

Thank you for your response. After the mastectomy they are going to do another biopsy in case there is more cancer that was not visible with the mammogramm. The doctor said the chances are pretty low but i guess you never know

farmerlucy

A genetic counselor would be a good source for advice re: familial risk. There is a new multi-gene panel for breast and ovarian cancer screening from Color Genomics which is $249. You might talk to your mom's oncologist about it. I'm sorry your mom is facing this again. Let us know how things go.

vandoulini

thank you very much. The oncologist said that he believes her chances of being braca positive are minimum. She was the first to have bc or cancer in general in her family. So far only heart problems to the other members and all died in an old age. I see from your info you had reconstruction. How was the surgery? was it immediate? my mom won't have reconstruction right away and i am worried for that also since she is a very beautiful woman and she has always wanted to look pretty.

lintrollerderby

Hi, vandoulini, and welcome. We're sorry you have reason to be here, but are very glad you found us.

I'd like to address some things from your first post.

• No, her original diagnosis was not Triple Negative. The C-ERBB2 listed in your post is another term for HER2/neu. This is an oncoprotein which is occasionally over expressed in breast cancer. If it were negative, or low (under expressed), that would be the third negative in "Triple Negative"; however, your post indicates her pathology was +3 which means over expression or positive.

• You state that her original diagnosis contained a 0.1 cm (you wrote 0,1 and I assumed that this is because there is very often a difference between the U.S. and other countries with regard to comma versus decimal usage in numbers) invasion. This means that her original diagnosis was NOT DCIS. She probably had mostly DCIS present then, but I must stress that the discovery of ANY invasive cells, no matter how tiny the area, means that you are no longer dealing with pure DCIS. At that point, even if, for example, she had 10cm of DCIS and 0.1cm of invasive cells found or IDC (Invasive Ductal Carcinoma), the DCIS becomes of secondary concern and the IDC takes precedence. This dictates that the minimum stage the patient can be designated at is Stage I. A Stage 0 diagnosis is strictly pure DCIS with absolutely no invasive cells. Now, please don't let this terrify you. The area was quite small and she had lumpectomy and radiation. The National Comprehensive Cancer Network guidelines for breast cancer treatment in the U.S. states that in cases of HER2+ IDC under 0.5 cm, chemo and targeted therapy may be considered, but I must stress that at 0.1 cm, most medical oncologists would not give drugs that have such serious potential side effects. I'm not sure what country you and your mother reside, so you'd have to find the treatment guidelines governing the doctors where you live.

• I'm sorry to hear of her recent recurrence. You stated she had a mastectomy. Does the pathology report state in absolute terms that there is no evidence of invasion of any size? If so, then, unless the treatment guidelines are very different in your country (which I doubt based on what you stated the oncologists said regarding no chemo when she had a known IDC of very small size), then she would not get chemo this time. From what I have seen, treatment guidelines are similar between the U.S. and many other countries. Pure DCIS never warrants chemo.

• I understand your worry. Are there other instances of cancer in your mom's family? While the absence of cancer does not rule out the presence of a mutation, it lessens the chances even more. Typically, though not always, a HER2+ cancer has a much smaller chance of being familial. It's not an absolute, there are cases where it happens, but the data tends to lean in the direction of indicating a sporadic cancer development.

I'm sorry that you and your mother are enduring this--it's not easy. I truly hope that she has no future recurrences.

Best of luck.

vandoulini

lintrollerderby thank you for your time, I am sorry you had to deal with this in such a young age, hope you are great now. I live in Greece, and the most doctors follow instructions from US. I did know that her first battle wasn't a pure dcis so you didn't make me feel bad. One thing you didn't understand very well is that she hasn't done the mastectomy yet. She will have it in a month. It is a very difficult decision and she chose to have a double mastectomy, the reconstruction won't be right away. She had the calcifications removed by another surgery with no general anaisthesia it is called mammotome. The doctor said that she is clean now they have removed all the calcifications, she had another mammogram to confirm it.As for the part of the genes now, my grandmother is like 85 never had a single mammogram in her life. She has many sisters all are very old in age perfectly healthy. THe ironic thing is that I have always been worried about cancer even when I was a teenager and my mom used to say to me don't worry we dont have bad genes in our family look at your mom! or your grandmother. From my father's side my grandmother died of breast cancer at age 80, however I don't think it has to do anything with genes since my aunts (my father's sisters) are 67 and 69 and they are healthy never had issues with their breasts.

turtlelady

Hi vandoulini, Welcome to the DCIS forum. Although the topic can be complicated and confusing, with many facts and figure thrown around, the answer to you question are really quite simple. If someone has a double mastectomy with a diagnosis of a DCIS, they are DONE. No radiation. No chemo. No follow-up hormone suppressants. Of course, someone can opt for reconstructive surgery, but no further cancer treatment would be necessary. The cancer will be gone and the chance of recurrence or new tumors will be nearly zero. As you've already been advised, the lack of BC in your family history suggests that the bracha gene isn't a factor.

vandoulini

so in about 24 hours my mom is having the mastectomy. SHe is in an extremely bad mood,she cries all the time and she doesn't want me near her. The surgery will last 7 hours since she is having expanders also. I am worried, I am in a very bad psycological condition and I also take xanax to relieve my anxiety issues. What should I do? How to help her? One review for those who havent read my posts, mom is 50 first diagnosis in april 2013 she had lumpectomy plus radiation THe biopsy showed mostly dcis with 0.1 microinvasion. ER/PR - , c-erb2+3 grade 3. Her mammogram this April showed microcalcifications which by the stereotapic biopsy showed dcis.

CAMommy

When I suffer from worry I try to figure out what part I have control over and what part I don't. The parts I do have control over I make a plan to change, those I don't I let go. My mom, a 43 year and still going BC survivor told me, when I asked her how to handle the worry, to let my doctors worry about it, not me. There is nothing I can do, so let them do their jobs and I should live my life.

vandoulini

thank you very much for your reply it really helped. I have seen your posts, I noticed your information regarding family history. Have you been tested for braca genes? It's very good to know your mother is ok after so many years! Do you know what stage she was when she diagnosed?

CAMommy

I have been tested and I'm negative for BRCA 1/2. I am going to have a more extensive testing done in a month or so. Im prett sure they won't find anything. I clearly have family history, but it is most likely unique to our family as is common with family history. I already had my ovaries removed, I get colonoscopies every 5 years and was getting yearly mammos, now I'll have closer surveillance. I feel like I'm well watched that if anything else pops up I'll be caught early. My brother passed from lung cancer but that is not genetic. He got it from his work.

We don't know the stage of my mother, most likely stage 1 since she didn't have chemo or rads. But she had a radical mastectomy, this was back in the early 70s.