Hello and questions

Shadowpilot · 12-23-2007, 12:57 PM

Hi, I am new here. Diagnosed Sept. DCIS (high grade), mastectomy found 5cm DCIS with 2mm IDC, ER/PR-, node -, Her2+(3+) no FISH. So two Onc. say 5-10% chance of recurrance. They are both recommending 12weeks of Taxol and a year of Herceptin, mostly based on the fact that I am 42years old.

So I need your help. I can't decide if this small chance of recurrence outweighs the side affects of the treatment. What are your experiences with the side affects both during and especially long term from similar treatments?

I am also looking at the San Antonio reports on recommendations for treatment for Her2+ in small tumors. I keep gong back and forth.

I would appreciate any thoughts.

WomanofSteel · 12-23-2007, 01:20 PM

I would definitely say that any side effects are worth putting up with, rather than risking a recurrence. I did everything my doctors told me and still after 4 years my cancer has reccured and spread. You and your family are worth it. Do everything and anything you can to protect yourself. Good luck and Merry Christmas.

PinkGirl · 12-23-2007, 02:35 PM

Hi Shadow

I understand your difficulty with trying to make these
big decisions. I can only give you my opinion, and it
is not based on any extensive research - I leave that
to others and hope that they'll let me know what I need
to know.

When I was diagnosed, I was immediately hoping that I
would not need chemo, not lose my hair etc. etc. After
reading about the nature of this beast, I changed my thinking
to "hit me with everything you've got". Chemo is not fun and I
still have some side effects from it, but I do not regret my
decision.

I'm sure you will hear from others on this site who will give
you a more "scientific" answer. Good luck with all of this -
you have come to a very good place.

BonnieR · 12-23-2007, 03:01 PM

It is good that you got a second opinion. I got 3 and they all differed! Yours sound in agreement.
I can only tell you what I did, not what you should do. But you can see from my history below that we were in a similar situation, I think. I also had a highly positive Oncotype test.
I agonized for awhile but then decided that I wanted to feel that I had done everything possible on the front end to prevent a recurrance. I wanted to do a preemptive strike, I guess. Not everyone agrees with this approach. But it has given me peace of mind. I didn not want to play the "coulda, shoulda, woulda" game and had regrets. That's just me.
I had the same chemo that is being suggested to you. Continuing with Herceptin for a year.
The chemo was no walk in the park. I had some pretty rough days each time. But nothing that I could not handle. Cause here I am, the 4 doses are over, my hair is coming back, and I am full of energy.
I received great advise and comfort on this site. They supplied practical suggestions too. Those who went before me offered wonderful encouragment and support. And I am here to do the same for you, whatever you decide.
Keep the faith!

Janelle · 12-23-2007, 03:43 PM

Shadowpilot,
I am no scientist but my understanding is that even with small her2 positive tumors agressive treatment is warranted. I had very few side effects from taxol. I took it weekly for 12 weeks. I also had 3 months of A/C treatment prior to starting taxol which was much more difficult for me. I have no side effects from the Herceptin. I know others have worse side effects from taxol but I just want to let you know it may not be bad at all. I did take vitamin B6 and L-glutamine powder to prevent neuropathy which my oncologist approved. I had no neuropathy so I don't know if I just got lucky or the B6 and L-glutamine helped.

CLTann · 12-23-2007, 06:49 PM

Hi,

Your DCIS is not small, although by definition it is not worrisome. The small second cancer is well within the guideline for action.

Many Stage 1 patients are not regular visitors to this site, therefore the answers you see are skewed toward more serious patients. Their views are generally for more aggressive treatment.

Not for your young age and one tumor size, I would without hesitation to recommend no chemo and no radiation, but mastectomy. However, because of these two factors, I will suggest chemo and herceptin. In San Antonio reports, there are advices for not taking chemo and radiation for very early stage patients.

Also remember that even with the most aggressive treatment, many patients still progressed to higher stages.

Best luck.

Jean · 12-23-2007, 07:00 PM

Shadowpilot,
I am sorry that you have been dx with bc. But, you have found a great board with many wonderful memebers to help you along your way.

There are many reasons to consider the treatment. It is good that you are node negative, but DO NOT base your decison on that. Yes, it is favaorable but there has been studies on node neg. woman who have
recurred, those Her2 cells love to travel and can do so via our blood system. You have many great years ahead of you, so of course your dr.
is considering your age. Your young and should have not major problems
with the treatment (unlike a woman who is in her 70's).

I had a small tumor please do not believe that size is the major decision factor...once again it is favorable to catch the tumor as early as possible,
but there are millions of Tumor Cells inside a small tumor. You are dealing with a very aggressive form of bc...therefore, you may wish to be aggressive with your treatment. You will cut your chances of recurrence by at least 50%....I think that is great odds, don't you?

The first two years are highest for recurrence, your one year of herceptin
will be a large benefit to halt the disease.

I guess by now you realize that I am for the treatment and the herceptin.
But this is an chocie only you can make. Make a decsion based on knowledge and not fear of treatment...etc. The treatment is doable,
certainly it is not a walk in the park...but many women have successful
completed their treatment.

FYI there is no data on small tumors and Her2 treatments yet....since
herceptin was recently approved for early sage disease. If you have
additional questions, just reach out to me, I would be happy to help
you in any way.....you can PM me.

All Good Wishes, and Welcome to Her2!
Hugs,
Jean

Sherryg683 · 12-23-2007, 09:51 PM

Being stage IV here, diagnosed at 47 and having to worry every day about whether I'm going to live and see my little girl grow up, I"d say to you . ..do the chemo. Her2 is agressive and the fact that you are young and have many more years to live is a factor. Sure the months that you are on chemo will not be fun but they are bearable, just think of it as an insurance policy for your future health. They will go by quicker than you think. If you do nothing and it does come back, you will feel awful. Be agressive with your treatment of this agressive form of cancer. .. my opinion..sherryg

Sheila · 12-24-2007, 06:55 AM

Shadowpilot
My diagnosis was very similar, except my IDC was 7mm...also ERPR- and Her2 3+....they call it a gray area...at the time I was diagnosed, Herceptin was not available for early stage...I did not get chemo, risk vs benefit...guess what, 1 1/2 years later, I recurred....not I am STILL in treatment, and will be forever...I went from a 1 to a IV in a year and a half...do the chemo, its got better odds for prevention...Taxol has been easy for me...I have had7 mos of it right now, and Herceptin is a breeze for most!

suzan w · 12-24-2007, 07:06 AM

Hi Shadow! As you can see by my statistics, I had a small tumor and chose to treat it with everything available. My surgeon and oncologist (at Swedish in Seattle) both agreed. I did not have alot of time to make decisions, Swedish was my "second opinion", first doctors (doc who did the biopsy) recommended a much less agressive regimen. After a high oncotype score ( predicts percentage of distant recurrence) I opted for chemo. My Her2 status dictated herceptin for a year. I can't say what would have happened if I had gone with the less agressive treatment (lumpectomy, followed by radiation...no chemo, no herceptin, and arimidex for 5 years-ER+). I have absolutely no regrets about the route I took and am still taking! Let me know if you want to talk for real as we are "neighbors"!!

tousled1 · 12-24-2007, 08:31 AM

ShadowPilot,

With you being ER/PR- I would definitely say do the 12 weeks of Taxol and the year of Herceptin. You're fortunate in that just a few years ago Herceptin was not available to early stage breast cancer. Taxol is doable and Herceptin will be very easy. In the end it is ultimately your decision. All the best to you.

penelope · 12-24-2007, 09:40 AM

Deciding to have treatment is always a very tough decision. I want to let you know what I decided and why because I was diagnosed at 35 and was in the "grey area". I also had two small children at home and wanted to see them grow up.

I was diagnosed with 4.2 cm of DCIS and a 7mm tumor, with no vascular invasion and negative nodes. I went on to have bilateral mastectomies, 4 cycles of AC and a year of herceptin. At the time 2 years ago, they did not think I needed taxol, although now I wish I had thrown that at the god awful thing to!

It was a tough decision. I had to fight for the mastectomies, and at the time the herceptin as it was not yet approved for early stage under 1 cm. But I decided to do it because of the large area of dcis, believe it or not. Although rare there are women who have progressed to stage 4 from dcis only, as well as from very small tumors that are her2+. You see in just 1 mm of cancer there are millions of cells and I was relying on some one (pathologists) to look over 42 mm of dcis and make sure it had not escaped. That is like looking for a needle in a haystack literally. I was thankful that they had found the tiny invasive portion, but was not able to completely trust that they had found everything. How could I, with billions or cells to look at?

In addition if it ever came back, I wanted to be able to look at my family and know that I hit it with everything I could. That I had led the good fight and there for it truely was meant to be.

The decision process was scarey and an extremely lonely one, but you know what? I learned a whole lot. I learned...

I am a lot stronger than I ever thought I could be.
It was not as hard to loose my hair as I thought.
I learned that when push came to shove, I was a very valuable and important to my family and friends.
That my marriage was going to last a life time, regardless of how long that life might be.
That I really could have a models body (with a little plastic surgery!).
And as truley unbelievable as this sounds....cancer, as ugly as it is, made my life better. I am a happier person.

Therapy is easier than you think.

Hope this helps you in some small way. You are at the hardest part of the journey. Once you make a deicion it will get a little easier. Good luck to you.

Vanessa · 12-24-2007, 03:55 PM

I have to agree, hit this agressive cancer with all you got. Good luck to you and I will keep you in my prayers.

Shadowpilot · 12-24-2007, 04:03 PM

Thanks everyone for your thoughtful replies and input. I well keep you updated on my decision and process.

Andrea Barnett Budin · 12-24-2007, 07:22 PM

SHADOW, I AM SO SORRY YOU HAVE TO GO THROUGH THIS CANCER ORDEAL, BUT YOU HAVE COME TO A GREAT PLACE HERE. I must agree with Penelope and all the Woman Warriors that have posted in response to your quest for input. I have been hanging around chemo rooms and onc offices for 12 yrs. I am stage 4, but I have seen a lot and met many a woman in your position.

This highly aggressive cancer came back in my case in 3 yrs. I did not have the benefit of Herceptin in 1995, not yet available. However, it has saved my life since my metastasis in '98 and it's fortuitous arrival for all met HER2 bc patients at the same time. Synchronicity can be a beautiful thing. You can see from my story below why I am grateful with each new day.

You with benefit of chemo and Herceptin from the getgo will do well, Shadow. Do it for yourself, and for those you love who love and need you. It is a very personal decision, not taken lightly. But w/no regrets you will have new eyes with which to enjoy being alive more than you ever imagined possible. As someone noted, we are all much stronger than we think we are. We are much braver than we imagined. Take control of your life, Shadow and move forward, well informed and fully armed! Keep us posted, please. We will be thinking of you...
Andi

cafe1084 · 12-24-2007, 07:35 PM

I have to agree with everyone else who's replied. You only get one first chance to get this thing under control. Your second chance is a chance you don't want to have to get. Im also er/pr-, her2 +, 1.5 cm IDC, LCIS, and I was diagnosed at 36. I have no breasts and I have a few side effects from the taxol and herceptin, but nothing I can't live with to be here for my kids and my family. It's a tough decision for some. For me, it was a no-brainer to have the chemo. Good luck with your decision and please enjoy your Christmas!

Steph C

Bill · 12-24-2007, 10:28 PM

Shadow, you have come to a great group. May God give you comfort and guidance. You've received alot of experience and wisdom from these wonderful women, already. Please do keep us posted. Taxol is not like the "old-school" chemo. of 15 or so years ago. Treatment has come a long way. Love, Bill

BonnieR · 12-25-2007, 12:50 PM

I just thought of something else that a social worker said to me that really impacted my decision. She asked "if it was a loved one who was facing the same choices as you, what would you want THEM to do?"

Holiday love, Bonnie

Shadowpilot · 12-25-2007, 02:30 PM

Thanks Bonnie for bringing in that perspective. I will give it some thought from this angle.

I have to say that if the chance of recurrence was higher this decision would be easier. I believe the body has a natural ability to heal itself. That what we take in and surround ourselves with is about supporting, encouraging and nourishing this ability. I am having a hard time fitting the "toxicity" of chemo into this framework of thinking. I know that it is helping the body to fight against the cancer cells but it seems to me there must be other more "glass half full", and less systemically challenging ways to support the healing process. An Oncologist told me I could reduce the chance of recurrence 20% by eating a low animal fat diet with increased fruits and vegetables. I know there are targeted therapies. For it is Herceptin but they won't give it without the Chemo.

We don't hear much from women who choose the natural (non western medicine) route. Why is that? Are you out there? I would like your input too.

Thanks for listening and sharing.

CLTann · 12-25-2007, 03:54 PM

For those who don't subscribe to western medical practice, they are likely not in this group. Therefore, you will hear none of their advices.

As to the non western medicine route, there is actually none that can stand up to be scrutinized. The surgical removal of a known tumor is the most efficient way to treat breast cancer. Having said that, I hasten to add that there are herb type medicine that seems to empirically prevent the tumor from coming back. Mushroom pills, curcumin, fatty acid balance, less sugar and fat intake, exercise, etc. are all helpful.

By the way, the chemo treatment is a systemic way to kill the type of cells that divides rapidly. It is not a healing process. It is a process to kill any stray bad cancer cells, in repetitive fashion. Even then, the killing may have missed the targets that may hide in some safe haven. It is a guessing game on how much the chemo treatment should last, or using which chemo agent(s).