Question for Stage I with small cancers

Lin · 03-28-2008, 08:47 AM

Annette finished her radiation treatments yesterday and
went back to new oncologist today (old one resigned)
thinking she would begin the Herceptin treatments that
her old oncologist said she would be taking. Instead
the new oncologist thinks she doesn't need it. He saw
that we weren't too pleased with this so he is sending
her case before the cancer board to get their feelings.
Her new oncologist feels that since her cancer was Stage
I and so small (less than 1 cm) the only thing he sees
in her future is an aromatase inhibitor. I'm worried
because I've seen ladies on this site who were Stage 0
and are now pathfinders for this dreaded disease. For
those of you that are Stage 1 with small cancers, did
your oncologist feel the same way about your treatment?

SusanV · 03-28-2008, 09:08 AM

This is a personal decision, but I was a stage 1, and my onc and I both felt that we wanted to give it everything that was available including Herceptin. I never wanted to be burdened with what if's... in my future. I felt that I owed that to my two small children. I know that I did all that I could with what modern medicine could provide me with at the time of my Dx. You can always find another Onc that feels the same way about your treatment options as you do. It is such a difficult journey to attempt to have all the right answers for the Oncology 101 Crash course, but your heart will know what is right for you.

Best of Luck and I wish you all the wisdom you will need

penelope · 03-28-2008, 09:12 AM

I had herceptin with a 7mm tumor. I just told my onc I wanted it.

What size was here tumor? I think the guidelines say anything under 5mm does not need treatment. But I know of others who have gotten treatment with chemo and herceptin for less.

StephN · 03-28-2008, 09:50 AM

Looks to me like her new onc had not looked closely at Annette's history.
Thanks for the details, as it was important in this case.

She had not only ONE tumor but a second surgery to get the "extensive DCIS" with comedo. So, TWO surgeries, several tumors, the first was INFILRATING, hormone positive.

This adds up to needing more treatment, if she wants to play it safe.
You are being a great friend to pursue more information.

Petesmom · 03-28-2008, 02:00 PM

Hi Lin,

Three years ago I had a recurrence in the same breast with a previous bc. Like the one before, my tumor was IDC with DCIS and the whole area was 0.7cm. The tumor was Grade 2, ES/PR + but this time it was also HER-2+++ by IHC. My oncologist said no to chemo in order to receive Herceptin because he felt the side effects would outweigh the benefits and that my overall survival chances would not be improved. At that time he said that no one was getting Herceptin without chemo. I have since heard that there are some women out there who are getting Herceptin with out ever having had chemo.
The other thing you mentioned was that the tumor had extensive DCIS . HER-2 is almost always present in DCIS. There are lots of arguments for getting the Herceptin but there are some of us who have not had it. As my onc told me at the time, it is a slam dunk when certain factors are in place such as Her2 status, + lymph nodes, tumor size, grade and etc. For those of us with small tumors in which the only real adverse factor is the HER 2 status, the picture is a bit fuzzier. I am on Arimidex and am 3 years out from my diagnosis. It would be interesting to hear from some of the ladies who might have gotten Herceptin without the chemo. There are a number of individuals on here with small breast cancers who have done chemo and the herceptin. Keep us posted.

Petesmom

Becky · 03-28-2008, 02:01 PM

This is clearly a case for a second opinion elsewhere as quickly as possible (even a third if need be). More information is always a huge plus.

pffida · 03-28-2008, 02:04 PM

I am stage one, MRM, node negative, er/pr- but was very aggressive with treatment, incluing A-C and Taxol. Am nearing the end of Herceptin. My onc wanted to be as aggressive as possible, and has mentioned several times the aggressiveness of the cancer. I have never regretted being aggressive. I only want to go through this one time!

CLTann · 03-28-2008, 04:24 PM

There are patients at Stage 1 who demanded and were given the most "aggressive" treatment. On the other hand, there are patients in the same group decided to go without chemo or radiation. I belong to the latter group.

Those who don't pursue the most "aggressive" treatment and showed no symptoms very rarely come to this forum since they have no reason to get advices. They live normal life for many NED years. I am an exception since I want to learn everything about bc just in case I need to compare notes in the future. So far, all are well.

The arguments against "aggressive" treatments are many: no toxic chemicals to your body, no drastic secondary effects or even secondary cancer from chemo and radiation. Moreover, the statistics reveal that many "aggressive" treatments do not improve the percentage of survival. In some cases, where the ER/PR are negative, chemo just does not have deterrent advantages.

It is unfortunate that most patients equate to aggressive atreatments with the best treatments. Doctors happily go along with this subjective decision since it is not their place to oppose such a decision. They do not want future lawsuits.

When dust settle down, it is a personal decision. For small cancer, no nodule, well differentiated, ER/PR postivie, postmenupause and healthy individuals, it is a more than even bet that you may not need to have the "aggressive" treatments. AI inhibitor should be the only simple medication for them. This is my own personal opinion.

AlaskaAngel · 03-29-2008, 10:58 AM

Lin (and anyone else),

After listening to discussions on this question over the past 6 years, to me it seems the general rule is that those bc patients who truly are making their decision themselves without pressure from anyone else, and who want (consciously or unconsciously) to hear that they should do aggressive treatment will seek out opinions until they get one from an onc who recommends it, and those who don't will not.

Which oncs are more "right" in your situation, and which ones are not?

My advice is to give the onc the "float" test:

Does the onc, entirely on his or her own (without being asked), include in the discussion true "informed consent"? By that I mean, does the onc tell you in a straightforward way that natural menopause and chemopause can have very, very different, permanent effects, and explain fully what they can be? Does the onc explain fully what the effects of chemo followed by additional treatments may be? Is the onc up to date on research that is attempting to address the various permanent negative effects that go along with whatever treatment he or she recommends? Or does the onc seem disinterested in or ignorant about that kind of research?

-AlaskaAngel

Karen W · 03-29-2008, 11:42 AM

I was stage 1 (3 years out) and did the most aggressive treatment I could, based on my tumor pathology and age (also 12th person to get bc on my mom's side).

I think treatment is a personal choice and hopefully once made, you have no regrets. I don't.

Karen

Paris · 03-29-2008, 04:19 PM

Hi Lin, There are some very good points made from both sides of the issue. You don't mention Annette's age but I am going to assume that since they are talking about an AI, that she is post menopausal which is good. At least, if that's the case, she won't have to worry about chemo-pause or chemo-induced menopause like Alaska Angel mentioned. The Her2 is definitely a negative but being er/pr+ with a grade 1 tumor makes it a little better.

It is a tough decision but is a personal one. I agree with Alaska Angel in that she should seek out an onc. that is going to lay out the entire story regarding chemo options including all side effects. I feel like I have signed my life away on some very minor procedures that had every tiny side effect listed but when it came to chemo it was more the opposite. I was told the main symptoms and that I'd have no problem with herceptin. Needless to say I was the one person who had every weird side effect that you could have along with all the regular ones and I had to be taken off herceptin due to cardiomyopathy. I wouldn't have done anything different even if I had known the other side effects since I was er/pr- and was 40 when diagnosed. However, I think I would have been more prepared mentally to deal with all the problems I had. And since I wasn't post menopausal I had no idea what going through chemo-pause was going to do to me. Hence I have changed oncologists.

I hope in the end she will be comfortable with whatever she decides. It would be kind of a shame if she didn't do it because the port is already in but it's easy to pop out.

Best of luck to you!

Jamie

duga35 · 03-29-2008, 05:31 PM

I was also stage 1, grade 3, er/pr positive and her2+++
I've just had my first round of TCH, and I have to say it wasn't pretty. I consulted with several different ocologists around the world as if they thought I should receive treatment. It ran 50/50. My oncologist suggested OncotypeDX to help me decide. He pretty much knew it would come back high because of the her2, but when it came back at a 52 everyone was shocked.

I decided to go with treatment because I'm male, and only 40, having male bc is a total rarity, and there are virtually no cases reported for men my age. I have a wife and an 11 year old daughter that is totally dependant on me and when the Oncotype came back that high, my doctor and I felt that I needed to give it hell, now, instead or waiting for it to met to someplace else in my body. I don't know if I made the right decision or not, especially because I've had just about every side effect under the sun with the TCH, according to my oncologist, and who knows if it is going to work. My oncologist is pretty convinced that it will comeback, but I didn't want to sit here saying "what if" if and when it does.

I just h ad my first CT scan last week and it showed a very small spot on my lung. They don't think it is cancer, but they really don't know. Can't do a biopsy, so the only thing to do is keep an eye on it.

To make a long story short, I think that the individual needs to make the decision to treat or not to treat after they have done as much research as possible.

I hope this helps.......

Doug

harrie · 03-29-2008, 10:34 PM

Those are good arguments on both sides of the issue. For me I understood that it would be a good idea to do the TCH, but also it would not be a bad idea to not do the chemo due to the size of the tumor. 50/50. 50% of good oncologists will recommend it and 50%will say it is not necessary. It appears logical to do the herceptin alone, but studies were done with the herceptin along with chemo.
There are so many of us that have been in the position of trying to juggle the pros and the cons, wanting to be aggresive, but not wanting to do an overkill. Bottom line is that it becomes a personal choice as to what kind of decision you would want to live with.
While trying to decide, I came to the conclusion that to do or not to do the chemo was a win/win situation.
I think age is definitely a consideration. If I was really old, I would probably say forget it! But because I want to be NED for a good 20 - 30 yrs, I went the very aggresive route. I feel good with the decision.
And then when I discovered how manageable the side effects were (maybe i was just lucky) I am REALLY GLAD that I went the whole 9 yards.
harriecanarie (maryanne)

sarah · 03-30-2008, 01:00 AM

Get herceptin! I had DCIS in 1999 and asked about Herceptin - back then it was just beginning for people with mets which I didn't have. In 2003 my cancer came back in the same breast despite having had a mastectomy! and now outside of breast so it is now invasive and now I'm on Herceptin and Femara (AI) for the foreseeable future.
I don't know of any downside to getting a precautionary dose of Herceptin unless you have heart issues. But I'm not a doctor. If they don't want to give it to you, I'd get another opinion.
Good luck
sarah

Paris · 03-30-2008, 04:53 PM

Hi Lin- Doug makes a very good suggestion regarding the oncotype dx. Since Annette is er+ this test is available to her and at least will give you both an estimate for recurrance if she were to not do chemo.

harrie · 03-30-2008, 10:33 PM

I had the Oncotype Dx and it was helpful in making my decision. My insurance company (Bluecross Blueshield in Hawaii) did not agree and refused to pay a cent. I did appeal as well as Genomic Health did to no avail. I ended up paying approx $3,500 for the test. I feel it is a good test to do, but you might want to get approval first. I know there are insurance companies out there that do pay 100%.
Harriecanarie

harrie · 03-30-2008, 10:47 PM

Oh yes, another suggestion is to get a recurrance score from ADJUVANT.COM.
It will give a recurrance scores based on the path report of the estrogen receptor status, histologic grade, tumor size, and chemo regimen. Then you will get several recurrance scores based on if the decision is hormonal therapy alone, or chemo alone, or both a combination.

When Dr. Pegram put my personal data into the adjuvant.com analysis, my numbers came out as follows:
84 out of 100 women are alive and without recurrence in 10 yrs. PLUS....
4 (more) out of 100 women are alive and without recurrence because of therapy (hormonal plus chemo)
Which translates to: 84% increased to 88% of being alive and without recurrence . That 4% additional peace of mind to me was worth the doing both the hormonal and chemo therapy.

Maryanne aka harriecanarie

harrie · 03-30-2008, 10:51 PM

RE: Adjuvant.com

When Dr. Pegram did NOT include my HER2 status into the analysis, my benefit from the combined therapy was only 1.6%. Almost not worth doing.

It was when he included the HER2/neu information did I get the results you see in my above post.

Maryanne

Jean · 03-31-2008, 01:29 AM

Lin,
Congratulations to Annette on finishing radiation treatments. There continues to be much debate on treatment choices with small tumors.
While at S.A. BC symposium there was much debate on this subject. Some
dr. believe all Her2 patients should at the very least have hercetpin. Dr. Slamon is one of them, he is a strong advocate of herceptin. He is the Father of herceptin. My advice is first find an onc. who specializes in breast cancer. That he is up to date on treatments and tests. Second, have your friend make decisions based on knowledge and not the fear of what could happen and the what if's. Third, you must realize that all meds have side effects and there are risks. For me, I wanted all the % 's
on my side, no matter how small. Each 1% brings me over to the winner side as far as I am concerned. Also, most important, it has now been
established that "one size does not fit all" each person should address there dx and tumor not by size, but rather the character of the tumor, the finger print of it. You can have a tiny tumor and it could have a high KI 67 level, or like doug, his oncotype DX test came back with a very high risk of recurrence (mine came back high risk) and my tumor was tiny. There is a pattern with Oncotype DX and Her2 patents, most of the time the test does come back high...it certainly helps those who are on the fence about chemo. The data is still out on the early stagers who have had chemo/herceptin/or just herceptin. We do know that herceptin is the "Magic bullet" and has proven to help those with spread of disease who are stage IV...it is only since last year that herceptin was offered to early stagers, there are many women who wanted to have herceptin and could not get it. Either they were too far out from chemo treatment or were not having chemo/therefore, no herceptin. Some women were able
to get herceptin off label. Your friend is lucky that she was not dx. 1.5 ago she would not have the choice. I met a woman a few weeks ago in the infusion room, she was telling me her first onc. told her there was no guarantee that treatment would help. She left that dr. and found another who said, "You have a one in eleven chance and you might as well be that one." I firmly believe that attitude is important on everyone's part.

Wishing you and Annette all the best, please do keep us updated.
Best Regards,
Jean

MJo · 03-31-2008, 08:10 AM

My Oncotype came back high risk, and my tumor was only 1/2 centimeter. I chose to hit it hard. If I had to do it again, I would skip the AC and take Taxol/Carboplatin/Herceptin combo. It's up to you,but you have one chance at a cure and that' now. Hope in the future they will be able to test us and say for sure whether there are cancer cells somewhere in our body. Until then, I would be very cautious about Her2. My oncologist calls it an "evil" cancer. I guess he saw a lot of recurrence before Herceptin.