Second Anniversary NED, with no chemo and no radiation

[CLTann]

I realize I am a minority here, opted for no chemo and no radiation although HER2 positive. Today is the beginning of my third year, a very significant road marker.

The benefit derived from chemo and radiation is less than 4% among stage 1 patients with no node involvement for non-recurrence. I chose not to get these treatments since the side effects could sometimes be worse than the benefits. Of course, it is a personal choice but many patients felt the more severe and harsh ammunition are generally better. I strongly feel that their extreme view may not be entirely sound. Doctors will never discourage a patient from electing a harsh treating plan because they don't want to be sued later.

I am actively engaged in medical profession as a hospital staff pharmacist. In this forum, my view is in the minority. I just want others to know that sometimes there are sound reasons for not accepting certain treatments.

I had my annual mammogram done today. The result was negative for the other breast. The radiologist asked me to go to routine x-ray labs in the future since he felt that my chance of recurrence is very low and the higher degree of expertise is not necessary. This advice gave me more confidence in my outlook.

I believe my daily build-up of immune health and Femera are doing their parts in helping me reaching this significant road marker. I am active in the this forum to share my views with others who could use a different angle in fighting this dreadful disease.

[mcgle]

Hi Ann

Congrats on reaching this landmark.

My dx was similar to yours in that I received neither chemo nor herceptin. However, I did have radiation, as a wle was recommended instead of a mastectomy.

My preferred hormone treatment is tamoxifen, which is causing me no side effects whatsoever. Don't like the sound of all the aches and pains AIs are responsible for!

Time will tell whether our treatment was sufficient.

Mcgle (UK)

[Alice]

Hi There,
It is good to hear from you and share your experience. I think some people assume that hey don't have a choice in their treatment. I opted for chemo and radiation but my case was much different than yours, stage 3 highly agressive cancer. It seems that the people that choose not to just accept the standard course of treatment do not share their experience. I am glad to hear that you are doing well. Keep it up!
Alice

[Chelee]

Ann, Big congratulations on being two years out. That's great! All any of us can do is make the best decision for ourselves depending on our DX at the time. I felt my decision was made for me since I had 5 positive nodes.

But I am so glad your working on year three. Way to go. May you walk down that never ending road of NED. :) Again, big congratulations girl.

Chelee

[kcherub]

Hi, Ann!

Congratulations on your 3-year status!

I do have a question...would you mind sharing where you found the 4% statistic? Your signature notes "postmenopause", but would you also mind sharing how old you were when you were diagnosed? As you will see from my signature, I was pretty young when diagnosed.

Thank you for any information you can provide!

[CLTann]

Kcherub,

There are many published articles comparing the statistics of non-recurrence factor from various treatment. The Adjuvant! is one I can easily recall, with numbers and graph for you to study.

At the time of my dx, I was 59. Older age is a favorite factor for non-recurrence, perhaps due to less hormone in the body. Also, the body has already adapted to the low hormone status, the addition of A.I. is not much a shock for the body.

If I were younger, with nodes involvement or elected lumpectomy, I probably would have chosen chemo regimen with radiation.

I also realize that there are plenty of women who did the same choice as I did. They do not participate in this forum since they felt they have no reason to be in a support group. To these women, they believe their cancer has been eradicated. In most cases, they are right. This factor moves me into a minority position in this very useful and informative forum.

Good luck.

[tousled1]

Ann,

Congratulatins on your two year mark!

[Sheila]

Ann
Congratulations on your anniversary....as you can see by my bio under my name, this is a tricky disease....I recurred very quickly.....none of us know! You are very lucky!!!!!!!!

[lexigirl]

Great news Ann! I am so happy that you are doing really well! Makes my day!

Hugs,
Lexi

[StillHere]

Ann, Congrats! and thank you for sharing your treatment decision and outcome so far with us.

[nancy dip]

Hi Ann,
I would be interested to know what you do/take to build up your immune health. Also, what/how much exercise do you take. You seem to be doing something right!! Congratulations and long may it continue. Nancy Dip

[AlaskaAngel]

Hi Ann,

Congratulations on being diagnosed early enough to have more choices, and your independence in pursuring a successful outcome with a disease that is so individual.

I do want to post a link here that may be helpful to others who are trying to make a decision in similar circumstances. I am one who did chemo as well as rads, but believe in hindsight that the choice I made was the wrong choice for me personally.

http://www.communityoncology.net/journal/articles/0308487.pdf

Best wishes for many more years of being NED,

AlaskaAngel

[BonnieR]

Congrats Ann! When I was first diagnosed, and even after my mastectomies, it was thought for awhile that I needed no further treatment. (one of my second opinions believed that I did not require anything else). Then doubt began to creep in and I entered a gray area because the test results, including Oncotype, were showing that although my cancer was Stage 1b, it was highly aggressive with a strong chance for recurrance elsewhere. And then the pathologist discovered more cancer than previously thought. I figured these were all "signs" I could not ignore so I now find myself receiving chemo prophylacticly. I guess I will always wonder if I made the right decision. And the story is still unfolding.......

[Hopeful]

Ann,

Congratulations! The 2 year mark is very significant. I am only 14 mo. post dx, and hope to be able to join you at your acheivement in another 10 mo.

I post here frequently, and I, like you, declined chemotherapy for my postmenopausal, highly hormone positive, her2+, stage 1 bc. My oncologist was willing to treat me with Herception without chemotherapy, so I did recieve a year of that. I also had a lumpectomy and radiation, and the radiation I am still troubled by. I tried very hard to get partial irradiation instead of whole breast, but was unable to achieve that. I also take an AI.

I am of a similar view as you, that harsh treatments can do more harm than good when not warranted. I try to give a balanced perspective, but respect everyone's right to make their own decisions on treatment. I read a fascinating article a few months ago about the psychology of treatment decisions made by cancer patients. It stated that, psychologically, individuals are motivated to aviod regret, and that failing to take an action (i.e., chemotherapy or other harsh treatment) would cause regret if the patient experienced a recurrence. Thus, people at even low risk are motivated to have the harsh treatment so that, if they do recur, they will not have regrets about their tx plan. I guess I am one of the odd balls for whom that line of reasoning does not hold water.

Best of luck to you for a great life continued NED!

Hopeful

[CLTann]

Nancy Dip,

Regarding my daily supplements, I take curcumin, flaxseed freshly ground, ganoderma (a type of mushroom) extract, omega 3 including olive oil, vitamins, vegetable/fruit predominant diet, very little red meat, adequate proteins from beans including soy and its derivatives, turkey and fish. I am a true believer of ganoderma. I walk everyday but not excessively. Milk and egg are included. Good nutrition is important to fight the disease.

Every person has cancers cells in the body and the immune system kills them. This is a constant fight and we must have our troops ready to do the battle everyday.

Alaska Angel's thread on the ER positive cancer is very interesting. Although there is no quantitative advantage cited for chemo, the article implies the chemo can only give a negligible recurrence edge of around 1 or 2%.

[Cristina19]

This was perhaps NOT the thread for me to read today because I just had my first round of chemo (TCH). Today is the proverbial 3rd day when everyone seems to feel like crap.

I agonized about doing chemo or not. I was offended (to put it mildly) that I was told that after a mastectomy I would run a 1-2% chance of recurrence if node negative. I had the mastectomy because the DCIS was so "extensive." I was relieved that I was node negative (1 sentinel node -) and when I returned to my doctor for the pathology report I received a different story:

extensive DCIS, 1.2 cm mass, ER +, PR-, HER2 +++ with a high (20%-30%) chance of recurrence.

When I asked my oncologist why I was told that mastectomy would leave only a 1-2% chance of recurrence AND asked that he please reconcile the very divergent recurrence percentages, he said, "I don't know where you got that number from."

Perhaps no one can tell us with any accuracy what the future holds but I hate that I could never seem to get any reliable information upon which to make my decision. In the end, at the age of 37, I made my decision out of fear and the hope that I could look into a future without cancer. In my gut, I don't want to be doing this. (By the way, the "gut" doesn't ever seem to tell me that what I'm doing is right or wrong; it just says, "I don't want to!")

Sorry for whining,
C.

[dhealey]

Ann, Congradulations on your annivesary of being NED. I think we all have to chose what is right for us as an individual. What works for one doesn't necessarily work for everyone. It has to be a decision that comes from the heart that you are doing whats right for you. I get all kinds of opinions from others that aren't even dealing with this disease. It usually goes in one ear and out the other. I chose bilateral mastectomies and 4 months of chemo because mine was so aggresive. I also do supplements and walk many miles every day to help keep me strong in mind and body. I will reach my one year anniversary in Oct. Yea!!! It's been a very, very long year!

[Patb]

Ann
I see you changed from Arimidex to Femara. I am really having problems
with aches and pains on Arimidex, 10th month. I asked my oncologist about Femara and she said its the same as Arimidex. I think I still
would llike to try it. She suggested Aromasin? I am also on Herceptin
and I think this is contributing to the problem.
patb

[CLTann]

Patb,

If your onc is willing to try another A.I., do it. Many women have done that and some, including myself, experienced relief from side-effects. We all understood that the different AI brands are basically the same in their chemical composition. Somehow, there are subtle differences. Any physicians should be open-minded in allowing the patients to make the change. What harm does the change do?

[BonnieR]

Christina, it is natural to feel as you do. Especially just a few days after a dose of chemo. I expect just about everyone here who is receiving chemo would identify with you. I don't WANT to be doing it either. But I feel I NEED to be doing it. It may be more disconcerting because some of us fell into a "gray area". At least I did. There was no right or clear cut answer. I weighed things and made a decision. As someone pointed out, if it becomes unbearable I can always quit.
But I also looked back in my journal and, after what seemed an eternity, but was really just a few days, the discomfort from the chemo lifted and I began feeling alot better and I saw that I CAN do this....so can you. Keept the faith...

[mcgle]

Ann

May I ask a question?

Why did you have a mastectomy if the tumour was only 1 cm? Was there associated DCIS which warranted this?

Mcgle (UK)

[CLTann]

That is an excellent question, on why I opted for mastectomy since the lesion is only 1 cm. My view was that there are millions cancer cells in the area, trying their best to grow. By cutting out a main target area, there got to be stray cells left. In 12 to 18 months, one stray cell can geometrically multiplied into another palpable or detectable cancer tumor. Of course, radiation would have to be added after lumpectomy for preventing the above from occurring. Since I am so much exposed to the medical environment, I try my best to avoid chemo and radiation, the latter is a cumulative dose restrictive, cancer causing tool in itself. All, including my gut feeling and personal preference, led me to my educated conclusion. I must also add that at the time of my decision making, my good friend, a wife of a medical doctor, both are certainly very knowledgeable in oncology, chose the mastectomy without chemo and without radiation also with her diagosis almost identical to mine. Furthermore, in my trained routine at hospital, we are so cautious in handling chemo agents as well as to guard against accidental exposure to radiation that could have swayed my conclusion.

[mcgle]

Fair enough. Going with your gut (working in such an environment) makes sense.

I desperately didn't want a mastectomy, and was fortunate in having such great surgeons who were able to reconstruct both sides in the same op.

At the end of the day, we do what we feel is right.

Mcgle (UK)

[nancy dip]

Hi Ann,
thanks for replying to my questions on supplements.

Can I ask why entering your "third year " is a significant marker and can you tell me of any other "milestones" I should be aware of? Nancy Dip

[saleboat]

Hi Ann,

It is really good to hear your news. Wishing you many more years of excellent health.

Jen

[CLTann]

The 24 month is significant because for all bc patients, the peak rate of recurrence maximizes around 18 to 24 months after first diagnosis. This has a theoretical basis from the cell division rate from a few cells to a palpable mass. The time coincides with the observed peak of 18 to 24 months. Now for HER2 patients, the peak probably is shorter. My guess is around 12 to 18 months. Regardless, after 24 months, the probability of recurrence goes down for all bc patients. That is the reason for my notation of significance.

[nancy dip]

Hi Ann
thanks for the info. I was not aware that Her2 had a shorter peak of recurrence. Nancy Dip

[Jean]

Ann,
Congratulations on your 2nd yr. mile stone!
I am thrilled for you and wish you many many more.
This disease is different for each woman. Very difficult decsions have to
be made and then we have to live in peace with those choices.

Kind Regards,
jean

[BEA]

Congratulations Ann on your choices. I too just received a good 6 month report. I know I am far from the major milestones but I too had this gut feeling for no chemo. I could not believe the pressure that was placed on me by the oncologist to take the chemo. The doctor even called me at home to make sure I understood correctly the impact of the decisions I was making. Again, just a strong gut feeling. Once again congratulations on reaching this major milestone in your journey.

BEA

[emily]

Hi Ann,

My story is similar to yours although I have just passed my 3yr NED anniversary. I was diagnosed in June 2004 and had a lumpectomy and radiation. At that stage her2 was not routinely checked in Australia. My tumour was small 0.8cm, Grade 2 ,pr + (10%) er -, clear margins & no lymph node involvement. When I went to a new oncologist last year on the recommendation of a friend who had Stage IV breast cancer my original tumour was tested for her 2 and found to be positive on IHC & Cish (which is a similar test to the Fish test but seems to be used in Australia more than in the US). The oncologist said she would have recommended chemo due to the her2+++ but in a way I am pleased that I was not faced with making that decision. it's heartening to know that there are others in the same position. May we all remain healthy!!
Kind regards,
Emily

[sassy]

Ann,

Congratulations on your milestone! Thank you for sharing your choices and experiences with us all.
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