Has Anyone With DCIS Had Chemotherapy?

[skibunny]

I'm curious about this since I was not given chemotherapy for my DCIS with microinvasion. I had a lumpectomy and radiation and was told I would be fine. Two years later the same DCIS has been found by MRI in the same spot. The pathology report says, "The morphology of the carcinoma is identical to the patient's previously resected left breast cancer." So...

Is this recurrence or did they not get all the cancer the first time? (The pathology report said there were clear margins, but only by 1 mm)

Since radiation didn't kill the cancer, should I have chemotherapy or herception?

I was told, mastectomy is the standard treatment.
From everything I have read, HER2+ cancer returns. So even if I have a mastectomy, this can return.

I am part of a HER2+ vaccine trial for people with DCIS and have to have either a lumpectomy or mastectomy after the trial to remove the DCIS that is currently in my left breast. I am opting for a bilateral mastectomy, but am concerned that I am not on any other therapy out there to prevent the DCIS from returning.

What testing or scans should I ask for?

Everyone seems very laid back since this is DCIS and they say it can't go anywhere.

What is your experience with this?

Thank you for trying to help me sort this out.

Skibunny

[Becky]

But....


if you have microinvasion, is it then only DCIS? I had DCIS on the "other" side and I am now contemplating bilateral (had invasive with one node involved on right, DCIS on left - 2 totally different pathologies - DCIS was 60% ER 30% PR Her2neg and invasive was 50%ER, PR neg, Her2 pos). Because on the Stage 2 cancer on the right, I had chemo and Herceptin. Rads too because of the lumpectomy. My margins for the DCIS was 2cm and the same on the right. I had the DCIS slides looked at by the hospital I was at as well as Sloane Kettering and Johns Hopkins (the cancer side just the hospital I was at and Sloane) to confirm. It was only 2mm of DCIS grade 2 with no microinvasion (3 confirming labs) and (like I mentioned) wide margins.

Most would not get chemo but I did because of the other side and it probably assisted the DCIS side too. I just finished my Herceptin yesterday and now I need to recoup and think about the "girls" and their future fate.

I would seek as many opinions as possible on your situation as in theory, with microinvasion, it is still invasion and theoretically, not just DCIS.

Have a nice weekend

Kind regards

Becky

[Lani]

click on her name and look at her posts. She saw Dr. Slamon and had the topo IIA test and had chemo with herceptin. I believe she finished the chemo and is now on herceptin only.

Hope this helps!

[mom22girlz]

I was told that all DCIS is HER2+. Is that right? Thanks. susan

[RobinP]

NOt all DCIS is her2+. High grade comedo necrosis DCIS is her2+ at about 70-80% of the time. Probably the lower grades are not as her2+. However, before taking Herceptin, a her2 FISH test would be indicated.

[RobinP]

High grade DCIS is usually lumped together in the breast, whereas low grade DCIS is very diffuse, necessitating a mastectomy. Still, I would opt for a mastectomy if this cancer has returned for a second time despite surgery with rads.


No one will ever know why your cancer came back at the same spot, whether the surgery was bad or the radiation. Are you sure you had clean margins when they radiated? Maybe a second pathology opinion on the old pathology would tell you. You know sometimes pathology errors do occur. If you had unclean margins, then that explains why radiation didn't work.

Good luck to you with your new treatment plans.

[mom22girlz]

My report said extensive microinvasion, er pr+ and her2+. I had to change onc. along the way and the 2nd one is the one that said all DCIS is her2+. He wanted to test only the microinvasion part separately, but the first lab had divided the "tumor?" poorly, so it could not be tested further. My rad. onc. said although it was not his area of expertice, he felt I should have chemo due to the her2+ and my age, 47. The regular onc. said that the way the slides were done also prevented him from doing the oncotype test. So, now I feel even more confused. I don't feel quite so confident..... Also, my lab results never gave % for er and pr +.But, the her2 test was 6.41 ratio which he said was quite amplified. Is this all very confusing to others too? Thanks for any insight you may have. susan

[tousled1]

Skibunny,

Since you are in a clincial trial you can only take the meds that are given in the trial. I'm sure that if you test positive for HER2, that after you have your surgery you will be able to go on Herceptin.

[skibunny]

Dear Lani,
Who is Dr. Slamon? Where does one find him?

Skibunny

[Lani]

If you go to Amazon.com you will see they even wrote a book about how he "discovered Herceptin" He has been given a slew of international awards and honors based on his seminal work which lead to the development and use of this drug for her2+ breast cancer where it has halved the number of patients with early (nonmetastatic) breast cancer who recur when it is combined with chemotherapy compared with those who were treated with chemotherapy alone. It also substantially lengthens the lives of those who are Stage IV (metastatic) as many of those who contribute to this website are. Some have gone eight years and more with metatastic disease controlled by Herceptin (noone knows how to define cure at this time)--some are NED(no evidence of disease) others are stable (lesions not progressing).

Two years ago he was not seeing any patients (he was busy jetsetting around giving talks and receiving honors). Within the last year he has resumed seeing some patients. He is at UCLA.

Sorry I don't remember the title of the book--but I am sure Google can help or another member of this board???

[karenann]

I am pretty sure the book you are talking about is, Her2, The Making of Herceptin.

Karen

[RobinP]

Just wanted to add that I agree with Becky that microinvasion is where the DCIS truly invaded. At the same time, a microinvasion is very small, less than 2mm. I've read that invasive cancers do not usually form blood vessels until they are about 2mm large. Presumingly, you microinvasion was less than 2mm and has VERY little risk of spread. Remember, the lymph and blood vessels are what cause spread of cancer and let the cat out of the bag.

You may want to check your orginal pathology for any lymphovascular invasion as an indicator of angiogenesis or vessel formation around your microinvasion. Also, was a sentinel node done. Was the node positive for micromets by IHC or H&E?

[Jean]

Hi Skibunny,

Sent you a private message.....


All Good Wishes,
Jean