Tell me I'm doing the right thing.

Miyu

This is my first time posting in this forum, although I've posted in the DCIS forum once before.

I was originally diagnosed with IDC HER2 positive, but the diagnosis was revised to DCIS after the unilateral mastectomy on my left breast. Pathology report said DCIS, but with POSSIBLE micro-invasions. I asked what possible meant, and apparently the microscope revealed nothing, only some kind of inflammation that often accompanies microinvasions. In the doctor's words, basically it's DCIS but mi can't be ruled out, although if I do have mi it can't be that big. Nodes were clear.

I was told that I could have chemo if I insisted, but the oncologist and surgeon both advised against it, saying the price would outweigh any possible benefits. They cited damage to my body, psychological stress (they know I'm pretty weak mentally and spiritually) and risk of leukemia later down the road.

After much thought I've decided to take their advice and go without chemotherapy. But I will take Herceptin on it's own. I know this is a little unusual, and the oncologist himself said that there wasn't much data on what Herceptin does without chemo. He said that it would probably have some effect, although less than what I'd gain if I used it with chemotherapy. His first advice was to have no further treatment, but since my insurance will cover Herceptin he said I could take it for the potential benefits it could give me.

Anyway, I think that's my decision. Is there anyone out there who thinks I'm doing the wrong thing? Am I really OK without chemo? I'm 38 years old with two little boys, and I just can't leave them yet! I really want someone to reassure me.

Thanks,

Miyu. 

Claire82

My gut feeling has to always go with the advise from my doctors. I took time choosing them and rely on their knowledge to get me through. If I felt that other treatment was necessary I would go to another doctor and get a second opinion.

laurakay

I actually have strong feelings about this because I tried so hard to get my doctors to give me treatments that I think, in the end, would have done me either no good or actual harm (not that this is necessarily what you're doing) when what I really needed was for someone to sit down and go through my path report very carefully with me, and explain it.  I've recommended this to someone else this month, so I don't want you to think I'm working for him or something (If you pm me I'd happily send you my email and name, so you can look me up, and see I'm not a salewoman!) but Dr. Lagios totally saved me.  He's a DCIS expert who does a second opinion service on your path report, and speaks to you on the phone about it.  It costs 600 dollars, and maybe your insurance would pay for it.  It was the best money I ever spent, because he reread, reinterpreted, and EXPLAINED my path report.  I think you really need a second opinion wherever you get it, because you may not even be HER2 positive--my understanding is that DCIS is almost always HER2 positive, but if they haven't even FOUND microinvasion, they have no idea, and herceptin can hurt your heart.  But I totally totally understand.  I'm ten years older than you, but CAN'T die yet, because I have a fourteen year old.  I would have, and still would, do ANYTHING.  But after I spoke with Dr. Lagios (you can just look him up on the internet; I was consulting with him less than a week after contacting him) I understand things that my very intelligent doctors just did not explain to me.  I am thinking of you.  Please let us, or me anyway, know what happens next, and just really-really consider getting a second read of your path report from someone, so at least you understand why you're making your choices.  They might be great ones, I don't know, but with the info they've given you, you don't quite know either, do you?  You've got time to get this right!  Hugs...Laura

susan13

Miyu-

Your path is close to what I had 15 years ago, I was 29 years old.  My original path was "possible micro-invasive" dcis, size was "microscopic". I had Dr. Lagios perform a 2nd opinion on the path which he felt was NOT invasive and recommneded no treatment, just close follow up.  My surgeon recommended chemo and radiation.  I also seeked a 2nd opinion from Dr. Gordon Schwartz in Philadelphia who is considered one of the top DCIS specialists in the country.  He recommended no treatment, just close follow-up.   Well... long story short, here I am 15 years later and stage iv.  No one can predict which way dcis is going to go. But from my perspective my opinion to you would be to do something, not nothing.  Tamoxifen or maybe even radiation cause I see the size was 6cm, which is a pretty large area.

If only crystal balls were real......

Good luck to you in what you decide.  I know it's all confusing. You have some time to research and to make your decision. Definitely get several opinions.

Best to you,

Sue

Cowgirl13

Go for the chemo.  You have 2 little boys.  There is a synergistic effect with chemo + Herceptin--if you don't have chemo the Herceptin may not be as strong.  Chemo was a piece of cake for me.

I'm never so forceful in my advise but when I saw you have 2 boys--you want to throw everything at this. 

Anonymous

Well, since you ask!  haha.

2 yrs ago I was DX with DCIS.  Path report came back that there was a 5 mm.... (1/2 cm) of IDC.  ER, PR, and Her 2 +++.  I begged for ANYTHING and EVERYTHING.  I was 40 with 3 kids.  My oncologist said "no way".  So I did nothing else.

I now have stage IV cancer.  I say do what ever you can the first go around. 

Good luck to you.

dlb823

Miyu ~ I don't know where you're being treated now, but I would strongly urge you to get a second opinion at one of the NCI-designated cancer center listed here:

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

The only chemo drug that has been associated with a risk of leukemia is Adriamycin, and I'm not sure that you couldn't possibly have a chemo regimen that doesn't contain "A," along with Herceptin.   

I would definitely get a second opinion, and preferably at an NCI-designated facility where they will be totally on top of the latest research and have extensive experience with situations like yours.

Good luck!   Deanna

Miyu

Thanks for the advice, everybody. It sure is great to talk about this.

Claire, Laurakay, Cowgirl, Deanna:

Thanks. I will get a second opinion. I've heard of Dr. Lagios, and I'll check him out. I don't know about the insurance, but if a second opinion can clear my anxieties it'll be worth paying. My sons are 6 and 3 years old, but it's not just them - I have one of those husbands who would be totally incapable of taking care of himself alone :-)

 Sue: 

So you didn't take any treatment? I'm really sorry you're at stage iv now. Is it the same cancer come back again, or a totally new one?  I can't use Tamoxifen because of being hormone negative, and I was told that radiation is for BCS rather than full mastectomy. BTW, did you get a full mastectomy right at the start?

Lisa:

Sorry about your situation, too. 5mm microinvasion and you got no treatment? It's a real shame. Reading this story (and Sue's) makes me start feeling scared again... Are there many people like you? In other words, DCIS-MI, no treatment, then suddenly stage IV? Anybody know the statistics on DCIS-MI women who do no treatment? What percent have a recurrence? What percent never hear of their cancer again?

I guess I really need to ask more questions at a second opinion. I guess I could handle chemo, and since you say that not all of it is associated with leukemia...

Thanks again for all your advice, and keep it coming!

 Miyu 

susan13

Miyu,

I did no treatment for the dx of DCIS except a lumpectomy.  Is it the same cancer? Well, it's the same breast, but it was ILC, then I had a bilat. mast.

What area of the country are you?  There are specialists who train in DCIS. See if you can find one and get another opinion.

Sue

Beesie

A 5mm invasive tumor is not a microinvasion.   A T1mic tumor, i.e. a microinvasion, is defined as being "not larger than 0.1 cm in greatest dimension".  In other words, for an invasive tumor to be considered a microinvasion, it is at most 1mm in size.  

A 5mm invasive tumor falls right on the edge between being a T1a or T1b tumor.  Whether it's T1a or T1b depends on whether it's exactly 5mm or slightly smaller, or whether it's slightly larger (5.1mm would be T1b, for example).  A 5mm invasive tumor with aggressive attributes is a small but very serious invasive cancer. It is not DCIS-MI.  Examples of what would be considered aggressive attributes include a tumor that is grade 3 and triple negative or a tumor that is HER2+++.  Treatment guidelines suggest that chemo should be considered for 5mm tumors with those attributes.

Here is a website that explains staging and defines a microinvasion:  http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page4

And here are the latest NCCN treatment guidelines (you may need to register at NCCN.org to be able to view them):  http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf

No matter how much DCIS you may have, even if it's a very large amount, if you have an invasive tumor that is 5mm in size, all treatment decisions should be based on the attributes of the invasive tumor. The DCIS becomes pretty much irrelevant, except that it has to be removed. This is actually true even for those who have  smaller (2mm - 4mm) invasive tumors.  And even for those of us who have true microinvasions that are only 1mm in size or smaller, although our treatment likely won't change vs. those who have pure DCIS, our staging is changed - we are not Stage 0 but instead are Stage I (tumor size T1mic).

Lisa, I am so sorry that you are in the situation you are in.  It sounds to me as though your doctors failed you.  You were treated as though you had DCIS, but with a 5mm tumor that was HER2+++, your diagnosis was nothing like DCIS or even DCIS-MI.  You had an aggressive IDC cancer and your treatment should have reflected that.  I don't know what the treatment guidelines were two years ago but today, treatment guidelines suggest that those who have a 5mm HER2+++ invasive tumor should be given both chemo and Herceptin.

Sue, it sounds as though your doctors may have failed you too, particularly if you were not given radiation after being diagnosed with DCIS with a possible microinvasion.  Today, radiation is the norm after a lumpectomy for DCIS.  It's true that sometimes it's not given, but those cases are the exceptions and usually doctors need to be very confident that the recurrence risk level is very low before they agree that it's okay for a patient to forgo radiation. From how you've described your diagnosis, it could be that not all of your DCIS was removed during surgery and the cells that remained continued to develop.  This led to a recurrence in the form of ILC, and that in turn led to mets.  I believe that DCIS can lead to ILC, although that probably would be quite unusual (maybe someone who knows more about this can chime in here).  Another possibility - and what might actually be more likely - is that your ILC was a 2nd breast cancer unrelated to your original diagnosis of DCIS.  Unfortunately for all of us, once we've been diagnosed with BC one time, our risk to get it again increases.  If BC develops a 2nd time, it's won't necessarily have the same characteristics as the first cancer.  Which ever way it happened, I am so sorry for what you face now.

Miyu, in your case, I think that you need to get more clarity about your diagnosis, if that's in any way possible.  Can you have the pathology slides reread at another facility?  And if not, then at least get a 2nd - and even a 3rd - opinion.  Herceptin is a toxic treatment which brings with it the potential of serious side effects.  If you have an aggressive HER2+++ invasive cancer, then the benefits from Herceptin will far outweight the risks.  But if you don't actually have any invasive cancer at all, or if you have only a true microinvasion (1mm), then according to current treatment guidelines, the risks that you would expose yourself to from Herceptin would outweight the risks that you face from your breast cancer so Herceptin would not be recommended.  Your choices are so drastically different, whether you have an HER2+++ invasive tumor or whether you don't, so you really need to know more to make this decision.

OneBadBoob

Miyu, there are many kinds of chemo.  Not all, mater of fact, these days most, do not include Adriamycin.

There is also CMF, which is a relatively "easy" chemo to do compared to some others. 

You might want to visit the thread on CMF--the ladies there are just wonderful and supportive and will answer any and all questions you have about that treatment. 

But they all are do-able.

And while I am no expert, it seems to be accepted practice that Herceptin works better with chemo.

I am with Bessie.  Get more clarity on your pathology report, get more opinions.

MAKE NOISE UNTIL SOMEONE LISTENS!!!

You are so young,  And your children are so small.  And you are ER/PR- so you do not have the option of Tamoxifin or another anti-hormonal.

Were I you, I think I would be pushing for the chemo.

Our first shot is always are best and most important shot!

Althought I had an 8mm IDC with some mixed DCIS, er/pr+/ her2- I had an isolated tumor cell outside of the capsule. I was told it probablly "broke" of of the tumor during mastectomy.

Three years ago, Oncs were not so concerned wiht ITC, but that is changing, and I am glad all threee oncs I saw recommended CMF Chemo.  As one of them told me, they don't know just how many ITC's it takes to get together and start a tumore, but I am so glad that I had the chemo.

I will never look back and say "I wish I would have done it" because I did.

Jane - Dance as if no one is watching!!
Diagnosis: 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-

1marmalade1

I have a question about the "naked" herceptin tx after chemo:   How often did you go to have blood work done & see onc before Herceptin tx?   I had one tx, no onc visit or blood work first.  The next visit, I needed the bloodwork, visit, & herceptin, therefore taking about 4 hours of time.  I thought with the H you just went in, they hook you up, and you're out in an hour or so.  What is everyone else's experience with this?

magentagirl

Miyu, I had a similar situation. I was with an HMO but went for second opinions outside of the HMO at my own expense (although I filed a complaint and got reimbursed!). I had a hockey puck DCIS tumor and a less then 1cm micro invasion with a cancer cell found in the sentinel node by the second pathologist that i took the slides to. He even showed it to me. The pathologist at the HMO missed it. So, The HMO said after my mastectomy I was done with treatment-but when I went to the second opinion docs and had the slides relooked at I was told I need chemo AND Herceptin. I am glad I did both. I AM REALY GLAD FOR THE SECOND OPINIONS I GOT.  Let us know what happens. I had Taxotere and Carboplatinin with Herceptin. It is unpleasant but not so awful. also, with the Herceptin they test your heart every three months or so and if the Herceptin has a bad effect you can stop and it is my understanding that the heart function returns. It is all very hard to decide about but my onc said my chances were definitely better with chemo and Herceptin. Let us know what you decide. Best to you.

gwen1watkins

I seem to be having trouble understanding how to ask a question...but here goes, please ingnore any missed spelled words, currently on pain killers.  I was dignosed with DCIS and for a year cried to docs to remove breast before i end up with full blown cancer, well it happened stage 1 cancer. I was dignosed Feb 3 2012 Monday and set up for surgery that Friday I had a double mastectomy with reconstruction at the same time) now facing chemo. Spacers have been filled once (i was only an A cup to begin with) now having to change doctors im left with deciding on my own to start chemo and put off filling spacers. My QUESTION is can i have these spacers in over a course of 2 to 3 months while doing chemo or will i have a risk of infection? I started my fill in Fresno but because all my family is in Los Angeles and no one to help me I had to change doctors to Los Angeles (City of Hope Hospital in Pasedena). City of Hope wont continue my reconstuction because i started in by another doctor in Fresno. It is so much pressure to ask my family (two sisters only) take time off to travel to Fresno when they are already trying to arrange time off for my once a week chemo sessions. I feel like such a burden. I was in Fresno when my mother was dignosed with cancer and my sisters took charge of it all, she passed away after a year of fighting. I was there when she passed but not there to help with all her doctor visits. Im so lost.