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Topic: Should I take chemo?

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Apr 28, 2007 08:12PM

WendyInCalif wrote:

Thank you for reading my post. I have had a 1.4 x 1.0 x 1.2 cm IDC, Grade 1, Stage 1, node negative, ER +3/PR +2, Her2 negative lesion removed via lumpectomy. I fully was prepared to hear that I'd be receiving RT and Tamoxifen and that I would not need chemo but my oncologist just recommended yesterday that I take six infusions (1 every two weeks) of Taxotere and Cytoxan.

He says this will bring my beyond 10 year surval rate up from 87% to 92% which he did on the www.adjuvant.com web site.

I asked him about an OncotypeDX test but he did not seem familiar with it. And actually seemed offended when I informed him of it and its pertinence. (I will be changing oncologists, I suppose as I do not want an oncologist who takes things personally).

I have sent my slices to John Hopkins for a second opinion and have requested that do an OncotypeDX.

I have just lost both my mother and brother (suicide..) in the last six months, my brother two months ago, and am profoundly depressed and my main symptom is exhaustion and information overload - I am forgetful and very spacy. I will be seeing a therapist as soon as I can find the time as since my dx, it has one doctor's appt after another, as you well know.

Adding the newly dx'ed breast cancer and along with an obvious "falling through the cracks due to negligence in my doctor's office," causing a delay in this finding by 1-1/2 years, I find myself frustrated with the medical industry, alone at age 49 and completely self-reliant and very frightened of the SE from chemo which may take me to a nonfunctional state, effecting my job performance, and I truly love and need my job (medical transcription). I am 49 years old and still premenopausal which is why he is suggesting chemo, he says.

I am wondering first if you well-informed and gallant ladies have any opinions regarding this recommendation.

The 5% increase in survival rate is based on a 2 cm size node I see (a friend of mine ran me profile and told me that and that she thinks his profile of me that he provided was not accurate as she came up with another number - she has the same dx and we met on line as "newly diagnosed breast cancer patients) and if you do think I should bite the bullet and go for chemo. I plan on going for a second opinion ASAP.

Thank you very much for any thoughts and personal opinions. I biggest fear is that he is wrong. Log in to post a reply

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Apr 28, 2007 08:53PM roseg wrote:

It sounds like he's treating you like a triple negative.

Rose

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Apr 28, 2007 10:05PM ducky1 wrote:

Wow Wendy, I am really surprised that he is suggesting chemo for stage 1, grade 1. Do you have lymphatic-vasculary invasion? I would definitely go for a second opinion! It sounds like they caught it very early. I am having chemo BUT am grade 3, stage 2 with invasion and am at high risk for recurrence. I am very sorry that you have to deal with deaths of loved ones as well. I know that you also have the added worry of being on your own. Get the other opinion and go from there.
Let us know what the other onc. says!!
Hugs, Cath
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Apr 28, 2007 11:02PM WendyInCalif wrote:

Thank you so very much for responding Cath! No node involvement or vascular invasion is stated on pathology report.

I hope you are well and tolerating the chemo.

I said to the doctor, I would be able to take chemo in the winter, after some time has passed and I am spiritually stronger and some time has passed, but he was adamant that it would have to be begun sooner,if taken, followed by RT and Tamoxifen. I will get a second opinion, for certain.

Thanks Again ((((Cath))))

Wendy

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 28, 2007 11:09PM WendyInCalif wrote:

I guess I have read about breast cancer approximately 2 hours a day on line, since 3/20 and that is true, Rose. This regimen is more designed for another histiological make-up.

Thanks, I am a wreck...I know I have to get a hold of this and well, Xanax helps but I cannot take that forever. Therapy is definitely in order along with a second opinion. I applaud those of you who have approached this battle with vigor. I get angry now and then but mostly I just feel very tired and maybe I realize I will never get my old life back. But, I do want life. That will never change.

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 28, 2007 11:12PM MissShapen wrote:

I definitely vote for the 2nd opinion. Chemo for stage 1 grade 1 with no +nodes sounds pretty ridiculous to me.

Good luck and I am so sorry for all you are suffering at the time. May God grant you peace.

Miss S

"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Dx 11/9/2006, IDC, <1cm, Stage IIIa, Grade 3, 7/31 nodes, ER-/PR-, HER2+
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Apr 29, 2007 12:01AM kathyinjuneau wrote:

Wendy,
For what it's worth, I'm stage I, grade 2, no nodes and .8 cm total DCIS and IDC. I'm 50 (oh, ok, I'll be 51 in a few days ) and I have had a lumpectomy and am starting radiation in a few weeks. I'm seeing doctors in the Bay Area, though I live in Juneau. I haven't yet seen a medical oncologist, but both my surgeon and the radiation oncologist have indicated I won't need chemotherapy. It's one of my fears that when I do see the med oncologist next week, that the story will change, but that's not really the point right now. I just wanted to give you another piece of first hand experience, add to the voices encouraging you to get a second opinion, and send good thoughts your way.

I am very happy with my doctors in the Berkeley/Oakland area, are you nearby?
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Apr 29, 2007 01:06AM ravdeb wrote:

I suggest a second opinion. Like Rose said..that is the new chemo combo for triple negs with or without node involvement.

I was between stage 1 and 2 but was triple neg so I did chemo and rads. They often (but NOT ALWAYS) believe that hormone treatments work better than the chemo on er pos tumors.

That said..the oncotype IS the way to help decide what would be best for you. Because of that, I highly recommend you see another onc and make a choice that you feel good about.

I had to switch oncs at the beginning after talking to 3 other oncologists because the first onc would not discuss a change in chemo. You have to be your own advocate.

Good luck.

IDC, 2cm, triple negative, grade 3, node neg

Dx 9/5/2005, IDC, 2cm, Stage Ia, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Apr 29, 2007 02:37AM lapsang wrote:

I was stage 1, grade 2, IDC 1.9cm no vascular or lymph node involvement. Had I been grade 1, my onc would not have recommended chemo. I had the oncotype test done, got a score of 15, but, more importantly, it indicated that chemo would have only raised my chances of no recurrence in 10 years by 1%. Going from 90% - 91% for me was not worth it.

Take the test, a low score is good, but also check on the percentage increase.
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Apr 29, 2007 06:40AM Marie_S_ wrote:

Wendy, you're a VERY wise woman to question this chemo recommendation. I find it beyond frightening to think of how many women wouldn't even think to question it and have recieved chemo unnecessarily. For God's sake, your Ki-67 is at ZERO...you couldn't even hope for a less aggressive invasive tumor!!

Although most oncologists can be trusted to deliver only treatment that's in the best interest of their patients, there are unfortunately others out there who are giving chemotherapy to those who really don't need it in order to reap the financial profit. I was an oncology nurse for many, many years, and I know for a fact that this occurs.

In the "old days", chemotherapy was delivered almost exclusively in the hospital setting and so it was the hospital that purchased the drugs and profited from their delivery. Back then, oncologists had virtually little or no incentive to prescribe chemo that wasn't necessary. Somewhere in the mid to late 1980's, chemotherapy slowly began being delivered in the oncologists office...and over time, it came to be as it is now...that most chemo is being delivered outside of the hospital setting. And with that change, the profit from delivering chemo switched from the hospital to the oncologist.

Read the following articles for more insight into the problem -

CANCER DOCS PROFIT FROM CHEMOTHERAPY DRUGS
http://www.msnbc.msn.com/id/14944098/
"The significant amount of our revenue comes from the profit, if you will, that we make from selling the drugs," says Dr. Peter Eisenberg, a private physician who specializes in cancer treatment.

And this one published some years earlier;

DRUG SALES BRING HUGE PROFITS, AND SCRUTINY, TO CANCER DOCTORS
http://www.uhmc.sunysb.edu/prevmed/mns/mcs/2/oncologists___chemotherapy.pdf

"The concession may also lead some doctors to recommend chemotherapy when patients may not benefit. In a 2001 study of cancer patients in Massachusetts, conducted by a team of researchers led by Dr. Ezekiel J. Emanuel of the National Institutes of Health, the authors found that a third of those patients received chemotherapy in the last six months of their lives, even when their cancers were considered unresponsive to chemotherapy. Those findings strongly suggested overuse of chemotherapy at the end of life."
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Apr 29, 2007 09:14AM WendyInCalif wrote:

Marie,

Major cuts have taken place in Medicare and Medi-Cal/Medicaid reimbursements due to the Deficit Reduction Act of 2005. It will have a significant financial impact on physician's pay schedule, especially stand along imaging centers. So, yes, I am very alert to the fact that generating revenue may be behind decisions that are not always in the patients' best interests. And this is heart wrenching - to think to put a person through chemo who does not need it. I have read chemo is very expensive and laborious. I have much to learn.

THANK YOU!!!! Thank you each and every one of you who read my post objectively. I have worked for physicians since I was 19 (am 49) and I only can conclude that we have to take charge of our own care or the care of those whom we love to prevent unnecessary procedures from taking place which take a toll on our body and cost us time and money, along with the stress that goes along being ill, which requires being in the medical care setting over and over again.

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 29, 2007 09:22AM jpann39 wrote:

Im so sad to see that a Dr. would go ahead with a treatment to the extent of chemo for a person who potentially doesnt need it for just the money....I know it commonly happens, but DANG where is their heart???

Wendy, I hope you get the Oncotype test done...my onco wouldnt even move ahead with any treatment until we had the results....My bc was IDC, Stage 2(2.4 cm), Grade 1, er+ (95%), pr+(55%) and he never once recommended chemo....my surgeon told me that I was definately looking at chemo, rads & hormone treatment because of the size....I was surprised when I met the onco and he said that he didnt think chemo was in my future with this and ordered the test....
Jule

'Gain strength by the positive and don't be sapped by the negative"

Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Apr 29, 2007 10:18AM iodine wrote:

Wow, Wendy, considering all that you have been thru, I am amazed at not only how well you express youself but how well informed and directed you are. Whew!
You have been given, IMO, excellent advice above, which, it seems, agrees with your own thoughts.
Go for the opinons, get the information to allow you to treat your bc and begin to get back your life, Wendy.
Please return here, we need you and want to help support you thru the maze.

Dotti---BE NOT AFRAID, Pope John Paul

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Apr 29, 2007 11:23AM WendyInCalif wrote:

Kathy, I am in Central California, Visalia to be exact. I went to Sansum Clinic in Santa Barbara after my diagnosis. I guess I won't be going back there. I will make an attempt to locate an oncologist in Fresno, California next which is one hour north of me.

Thank you again, kind ladies. For those of us who are investigative and question authority, it certainly does pay off (it has in my case). I knew in my heart when I left his office that something was not right, I felt it in my gut...

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 29, 2007 12:19PM DoreenF wrote:

Hi Wendy: I also am very impressed by your knowledge and your being a strong advocate for yourself. I can't imagine what you're going through with the loss of two close family members - that has got to be so hard.

Anyway - wanted to add my thoughts - I strongly agree with your choice to get a second opinion. I also had early stage , node negative IDC, had the oncotype test and declined chemo with my oncologists blessing. My surgeon was the one who ordered the oncotype test. By the time I saw my oncologist the results were in - my score was a 19 - at the very low end of the intermediate risk area. My oncologist had just come back from the San Antonio conf and had attended a number of sessions on oncotype. He told me that before the conference he wasn't convinced of the oncotype test - but that he'd learned alot at the conference (this was 2 years ago shortly after the test came out).

There's a large trial underway now called the TAILORx trial - it is studying the mid-range group with the hopes of determining the cutoffs for where chemo would be overtreatment or undertreatment for early stage breast cancers.

I hope you'll find an onocologist that you feel comfortable with - and that you'll have the oncotype test done ... and that that your results from the oncotype test fall into the low risk area - and that you can confidently skip chemo.

Let us know if you have any questions or we can help you in any way!
Hugs,
Doreen

"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto.

Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Apr 29, 2007 12:45PM Tricia wrote:

This information is so helpful. I am waiting for the results of my oncotype test. I have am MRI in a week and a half to hopefully help me decide to have another go at clean margins, one mastectomy, or two. I never imagined I would have to educate myself in order to make ask relevant questions, and make informed decisions. I really appreciate those of you who are so helpful answering questions. (Mine is ILC and LCIS ER/PR+ HER- )
Tricia

Tricia

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Apr 29, 2007 12:54PM WendyInCalif wrote:

Marie, I just perused the two informative web sites you so kindly made available. Thank you!

I had no idea oncologists made a profit from delivering chemo. This is very frightening. I remember saying to the oncologist on Friday, "would you recommend chemotherapy to your wife if she had breast cancer that had my histiological criteria?" and he refused to answer my question and changed the subject.

There may come a time when I do require chemo for any future medical problems I develop (even recurrent breast CA) and to have put myself through this unnecessarily would have left my body compromised in its ability to tolerate it.

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 29, 2007 01:07PM ShirleyHughes wrote:

Hi, Wendy. I agree with all of the ladies.

This must be very hard for you after losing two of your loved ones. I am so sorry for that. That in itself can take a toll on ones body and spirit.

Take your time. There is no rush. Get the opinions and tests that you need.

Shirley

God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference

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Apr 29, 2007 02:36PM Sue227 wrote:

Wendy,
I was 48 at diagnosis, 1.6cm, no nodes ER/PR+, Her-. I had lumpectomy, mammosite, had the oncotype done and scored a 21 and then decided to do CMF chemo. I researched alot. The American Cancer Society website has a section where you can answer questions with your path report and they will give you the recomended treatment. This site said CMF. It is a very easy chemo to do. I never missed work, except for the 3 hrs every 3 weeks to have the treatment. I'm with everyone else, I would not do such a harsh chemo without the oncotype done. Take your time and get a 2nd opinion.
Sue
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Apr 29, 2007 11:37PM WendyInCalif wrote:

When I asked him about an oncotypeDX test, he seemed unaware of it and then stated that I must mean a MammaPrint. When I looked up MammaPrint, it apparently is not available in the U.S. but only in Europe (WTH???). Though it is FDA approved, it is a smaller, shorter study. He left it at that and so, I do not even know if he is going to send my block to Europe (WTH??????) rather than three hours away in, I believe it is Redwood City, CAlifornia. I am exasperated. I typed him up a somewhat rude and demanding letter but I had better not send it, huh? He also forgot to give my an Rx for Effexor at my visit and it appears to me I could use an SSRI right about now.

You know, if the Onco test proved valuable, I'd not hesitate to do a CMF course. I have bad hair anyway and work at home so have a short trip to the bathroom, privacy and a bed close by. And my employer and coworker have been absolutely 100% behimd me with regard to what the future will hold and the time I have had to take off work.

On Friday, attempted to have my slides sent to John Hopkins thinking they could do an Oncotest but am informed my oncologist must submit a block of my tissue personally.

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 29, 2007 11:47PM WendyInCalif wrote:

Sue, In my pursuit of information, I came across this:

http://www.breastcancerhealth.org/webcas...st_adjuvantexam

Excerpt:

CATHY CONLEY: Doctor, it's now widely accepted that adjuvant chemotherapy containing an anthracycline is better than the historical treatment known as CMF. Why is that?

HYMAN B. MUSS, MD: There's a very wonderful thing that we've all participated in clinical trials called the Worldwide Overview, and they have data on about 190,000 women from all over the world, many American women, Canadian women who have been put in randomized trials comparing one drug with another by a coin flip, and in their trials, they've looked at the anthracyclines versus more traditional therapies like CMF, which are among the original adjuvant therapies that were so successful in improving survival. In the overview, the use of anthracyclines has further added to the benefits of CMF by about 10 to 15%. In those overviews, which are pretty convincing overall, I think it's pushed many physicians to consider anthracycline use. But again, in older women -- for instance, in their 70s -- and people with heart disease and others, their use is of great concern.


CATHY CONLEY: Doctor, what are the side effects of anthracyclines, and is there a difference between the two agents?

HYMAN B. MUSS, MD: Well, anthracyclines' major side effect is lowering blood counts. Both epirubicin and doxorubicin can be very damaging to the marrow. It's a transient effect in most patients, lower counts. When you have low blood counts, especially low white cell counts, you're at higher risk of infection, and that is the most dangerous side effect of chemotherapy.

Other side effects, like nausea and vomiting, we're actually very good with these days. Thinks like mouth sores, which can be very rough to have, are probably similar among the agents, and then, as we talked about with cardiac toxicity, the heart damage, probably in the doses they're given, it's probably not a major problem for either anthracycline if a patient is closely monitored. When you get to high doses, there might be some advantage for epirubicin.

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 30, 2007 09:57AM DoreenF wrote:

Hi Wendy: Mammaprint is pretty new and is only available in Europe at this point. Oncotype and Mammprint have very similar results.

The biggest difference between the two tests is the requirements for the tumor sample. Oncotype uses parafin preserved tissue - this is the standard way the tissue is preserved in the US. Mammoprint requires fresh, frozen tissue. So... in the US we'd need to know upfront that we want the Mammoprint test.

The other big difference between the two is the number of genes they are evaluating. I can't remember the specifics but have access to the info if you're interested.
Hope this helps.

Doreen

"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto.

Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Apr 30, 2007 11:40AM lc111350 wrote:

Hi Wendy, I had stage 1 grade 2 er/pr pos her2 neg. I also was not expecting the rec for chemo but I checked out the MD Anderson web site and looked at their protocol. Friday I finished 4 rounds of cytoxan/epirubicin. We did dose dense (every 2 weeks) b/c I could shave a month off my treatment. I'm glad it's over. I did pretty good, continued to work, was very tired, took good drugs for nausea and diarrhea. Get that oncotype dx done and get another oncologist. and check out MD Anderson's website and see where you fit in their treatment protocol. best of luck to you, be strong, Lexapro is a great antidepressant and you might ask about it.

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Apr 30, 2007 12:51PM vegasbaby wrote:

Wendy, I would definitely push for the Oncotype test. I was Stage 1, node negative, no vascular invasion, highly estrogen and progesterone positive, her2neu negative, brca negative, and my tumor was 1.2 X 1.5 cm. I was 35 at diagnosis so premenopausal. I did a lumpectomy with clear margins. My oncotype dx score came back at 29 so I endured eight rounds of chemo. Four rounds of AC, then four rounds of Taxol. Yes, there were days when it sucked totally but it was not impossible by any means. I had a two year old at the time and am a stay at home mom and I managed just fine. Whether my onc gained financially from my treatment or not...I don't care. I know I did everything in my power to kill the beast and I'll never look back and wonder...what if? Push for the oncotype. That's your best bet! Good luck.

Gayanne

Dx'd 5/06 IDC 1.4cm, stage1b, grade2, er+/pr+, her2 -, 0/3 nodes

Surgery 05/19/2006 Lumpectomy (Left)Chemotherapy 07/08/2006 Adriamycin, Cytoxan, TaxolRadiation Therapy 11/13/2006 ExternalHormonal Therapy 03/15/2007 Tamoxifen
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Apr 30, 2007 01:01PM ADK wrote:

Hi Icc,

I am wondering what you saw at MD Anderson that convinced you to do chemo? My dx is almost identical to yours and I did not do chemo. It was not really recommended to me.

Thanks

Anne

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May 1, 2007 10:30PM WendyInCalif wrote:

I have scheduled an appt. for a 2nd opinion re: the chemo. I received the History and Physical the original onc. dictated and he stated he was be acquiring a MammaPrint gene study. From what I recall, it is FDA approved but the company in Europe cannot find a US (pharmaceutical co? genetic lab?) to do the test. I recall also that the difference between OncoType DX and MammaPrint was the number of genes studied. I will have to read that again to decipher it.

I am going to wait for the test results and go with the number.

I really do not want to go through this again and if, as the surgeon says, it will only require being miserable for six months, then I could do that. I work at home so that would be a tremendous help should the results of the test reveal I am a likely candidate for recurrence.
It is heartening to hear from those who have taken chemo and resumed life again with no regrets.

Thank you for responding )

DX 3/07, G1, S1, IDC, RT.

Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 2, 2007 10:46AM lc111350 wrote:

Hi Anne, it was based on tumor size. They have recently lowered the limit on size and I fell in to their new recommendations. I asked the radiation onc what he would do if it was his wife and there was no hesitation about doing it. I also saw my mother die from metastatic breast cancer and I felt like I had to do everything I could. Lastly I had a rare skin rash that is associated with malignancy that got worse after the lumpectomy and I figured my body was talking to me and I should listen.

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May 2, 2007 10:58AM ADK wrote:

Thanks for getting back to me. I can certainly understand with your situation why you would do it. I don't even remember how large my tumor was, but I remember that it was borderline. The onc mentioned chemo in passing only once and wasn't very pushy about it. My rad onc agreed that I should not have done it. I also have Crohn's disease and the side effects of Chemo might have really had a bad affect on me. I hope all is well with you and you are healthy now.

Anne

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May 2, 2007 11:43AM lc111350 wrote:

Anne, just knowing that part is over makes me better. I get a month's break before starting rads (dreading just a little bit) and I'm taking a little time off to go to Sedona and get spa'd and recentered emotionally, physically, and spiritually. I hope you are well also.
Wendy, best of luck to you.
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May 2, 2007 12:25PM stacey2930 wrote:

I was diagnosed grade 1 stage 1 I had the oncotype DX test which came back in the low catagory so It was recommened that I dont do Chemo. I would definately get the oncotype to make sure the benefit of taking chemo outweights the risk. Stacey

Yesterday is history tomorrow's a mystery and today is a gift that is why it's called the present

Dx 10/20/2005, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 2, 2007 01:00PM Shirlann wrote:

I think it is time for a timely wake up call for all of us. While we want and need to do anything and everything to prevent a met or recurrence, 2nd opinions, when a diagnosis is on the fence, is essential.

My mother's best friend was in a car accident. She was straightlined from day one. They kept her on life support at a local hospital until her 30 day AAA accident insurance ran out and then promptly pulled the plug. This, of course, did not hurt her, she was gone, but I was sadly dissilusioned.

Then, my mom had a stroke in 1995. Her husband had great federal government insurance. She was sometimes concious and mostly slept. They kept her in the hospital for exactly 30 days, when the insurance ran out, then she went in a rest home. Coincidence? I don't think so.

Sighhh, I hope I am not being a paranoid klutz. We surely need to trust our docs/oncs, but you can't beat a 2nd or even a 3rd opinion when you are close to the dividing line on treatment.

Gentle hugs, Shirlann

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