If you were stage I, did you get chemo???

Pompeed · January 2011

I understand perfectly well the situation of women who are fairly young and especially those who are in the middle of raising children. That is not only age but situational circumstances: there are responsibilities and obligations to others which must be considered when making treatment decisions.

There's a woman at the Fellowship I attend who is in the same circumstances: she's early forties, has two teenagers (and one is a serious problem child), a husband and a decent job. Her diagnosis was close to mine but somewhat worse: she's Stage II, Grade II, HER2+ and oncotype higher in the middle range than I am which means her recurrence risk is greater because she's closer to the high risk group. She had a lumpectomy and then rads, chemo, Herceptin and now hormone therapy. She's been at this for more than a year and she looks terrible and feels terrible too. Without any hesitation, she's thrown everything she could throw at the monster because she has to be around to get her kids to adulthoood. Took her less than five minutes to make up her mind about everything and get started. No hesitation for her in making decisions. As she put it to me, she told the MDs do to everything possible to see that she lives long enough to get her kids through college. Her choices make perfect sense given her age and her family circumstances.

I have no obligations to anyone at all and I'm perfectly happy to live fewer years than my grandmother (98) or my mother (89) as long as the fewer years I do live are quality years of decent health and mobility and travel and adventures with minimal pain.

I see no reason to make myself unhealthy right now for another year when I'm pretty healthy at this point and the health problems I do have -- even the cancer -- are reasonably manageable. My choice of skipping chemo would not be a wise choice for others and I'm not recommending it because this entire undertaking is completely individual to those living it. But it makes sense to me given my circumstances.

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Kindergarten · January 2011

Dear Pompeed., After reading your comment about the woman who underwent chemo and looks and feels terrible, all I can say is WOW? I am six years out after having 9 chemo treatments, 38 radiation treatments, a bi-lateral masectomy, a total hysterectomy, two hernia operations, and am currently on aromasin. I feel absolutley wonderful now and would go through it again knowing that all the treatments saved my life and actually gave me a better quality of life. As the cancer was growing inside of me, I felt terrible, now I know why. Sure there are definite side effects to treatment, both positive and negative. But I truly believe that I have beaten the odds and I am a true survivor. I think you need to talk to the long term survivors who gone through the aggressive treatment and find out how they feel about enduring the chemo. I will pray that you make the right decision. Kathy

Pompeed · January 2011

Dear Kathy:

I'm delighted that you have experienced an outcome which has given you the sense that you have "beaten the odds and are a true survivor" and you view your decision as the correct one for yourself and your situation. I do understand that very aggressive treatment -- surgery and chemo and rads and everything else -- is appropriate for some. It is not appropriate for me.

I understand that it is your opinon that I should go "talk to long term survivors" although you do not know much about my circumstances, medical or otherwise. Frankly, after much consideration and thought and talking to people and reading notes on this Board, I'm done talking. I'm done talking to cancer patients about their own choices which suited their circumstances and I'm done getting opinons from MDs too. The decision has been made: no chemo for me. So consider that your prayer has been answered: it's the right decision for ME.

I will spend this year being as well as I can be -- proper diet and exercise and stress management and medical mangement of some chronic problems -- instead of being as sick I would be if I took the chemo and by doing so, ignored the enormous risks it poses for me. There's a very significant risk that by doing the chemo, I could end up dead. Or be so very sick I'd be wishing I was dead and be looking around for a 15 storey building to achieve that result.

I will not sacrifice the life I have right now for the mere possibility that by taking chemo, I might (not will, only might) dodge a recurrence at some time in the next decade. There are times when less is more and for me, this is one of them. As I tell my students: "as little as possible but as much as necessary."

Pompeed

annettek · January 2011

Pompeed- are you taking the anti hormonals now? I am still struggling as I await my blood test results following my own course of "natural" alternatives to see if they squashed down the estrogen level...thanks

Pompeed · January 2011

Not yet. Got to get the last tests done first.

Parentof1 · January 2011

Hi. I was diagnosed 7/09. I also was: Stage1, grade2, Her-, PR+, ER+. My Oncotype DX score came back as an 8, and I didn't have any Lymph node involvement.

I had bilateral Mastectomy (both breasts removed.) This is a very personal choice/decision for every woman but, for me this was the right choice and, one I was comfortable with. Also I know myself and, I am one that would wonder and stress myself out over: Is it in the other one? I also needed to know I was proactive and did everything within my ability, to give myself some peace per say.

I also have been married 27 year's and have had a wonderful, supportive husband and family which has been a blessing in many ways.

I did not do or have Chemo. I am on Femara, which has also has side effects but, I don't know of a medicine that doesn't either.

A lot of your treatment will be determined by things such as: Staging, grade, wheather you are HER- or positive, Oncotype DX score and what you feel is best for you.

Because my BC was: PR+, ER+, HER-, a stage 1 and my Oncotype DX score came back as an 8,I had no Lymph node involvement my Oncologist said there had been studies where women that are: ER+, PR+, stage 1 cancer, HER-, without Lymph node involvement got no more benefit from Chemo than, just doing Femara for 5 year's. (Your Oncologist may recommend longer on the Femara. I don't know what they may recommend but, in my situation I was told 5 year's on the Femara.

Alot of your treatment and the decison you and your Oncologist make will be based on: 1. Staging, grade, Was there any Lymphnode involvement? Your HER status? Weather you are having one breast or both removed? If one breast will you be having reconstruction and if you do this will you be doing Radiation? And of course your Oncotype DX score.

For me the only SE from the Femara I had were and at times still are: The awful hot flashes. I would wake up 2-3 times a night sometimes, soaked or damp and the next minute I was chilled/cold. And within the last month I have had achy bones/joints. However I am not sure the achy bones/joint are related to the Femara or due to my prior medical issues, before I was diagnosed with BC.

Before my diagnosis of BC, I had Osteoporosis stage 3; and I broke 3 vertebraes in my neck in 1983 and had to have a cervical fusion done on these. I also live in Minnesota, where it gets cold and damp in the Winter. So it is also possible I have some Arthritis going on now in my neck/cervical area...yes I am getting older!

Also keep in mind that just because a side effect of a medicine is listed does not mean, everyone has "all" of these side effects. Some on these boards that take Femara for instance have no side effects or are not bothered by the ones they do have.

I wish I was there to give you a big ole hug or to be a sounding board for you- Smile . But because we are not in Detroit together, this is not possible. But I send my hugs and thoughts your way.

I am glad to see you come here...not for the reason you are here. But you will find awesome, beautiful, supportive, and encouraging people here.

I also have a 20 year old daughter. My daughter is much older than, your son but kids really are resilient. I worked as a full-time Nanny for many years and, saw how resilient they can be first hand.

Just try to keep things as normal, as you can for him. IE: Preschool/school; friends; schedules ect.

Please keep us posted....Peg

Halah · January 2011

Hi Maria, My dx was at 50 and is idc <1cm, grade 1, ER/PR+ HER2-, no node involvement, and with a 16 for the oncotype dx test and opted for no chemo.

I had no idea that metformin decreased risk for breast cancer recurrence. I take that for diabetes and I am glad to hear this.

Jo1955, with regards to getting the test done...I have good stats and questioned the same thing. The oncotype dx test result can change everything and from what I have learned it is an important test to be taken.

Mindy xxx

cookiegal · January 2011

Mgd....17 is not so bad. On the node postive chart the benefit kicked in at 20.5...maybe the curve is a little different on the node negative chart. My onc said if I was a 20 he would be comfortable with no chemo. I was a 22 and decided to roll the dice.

There are other factors, that could make chemo more likely, but from an oncotype point of view you could opt out of chemo.

Good luck what ever you decide.

annettek · January 2011

Peg- thank yo uso much foryour input you and I are extremely close in our diagnosis and score (mine was a 6)- I go on Wednesday to be faced with my hormone levels after trying my natural alternative (DIM,etc). YOU ALL ROCK!

annettek · January 2011

Hey fellow houstonian area person Winterstorm- are you taking an AI>? again, you are very close in dx to me and I am going nuts if my numbers next week do not support the natural way...

Halah · January 2011

Hi Annette, I began taking anastrozole (generic for arimidex) Oct 16 2010. What do you mean the natural way? What is DIM?

So far no real SE with the anastrozole except for the hot flashes. I get my vitamin D checked next month, it's good for bone health (anastrozole has SE of osteoporosis).

jillyG · January 2011

mdg, I just wanted to say that I was diagnosed with IDC over 2 years ago, at age 33 when my kids were 3 and 5. It was very hard on all of us but kids are SO resilient. I told them I was sick and that to get better I had to take medicine that would make my hair fall out. I also told them that cancer didn't make my hair fall out, that might be an important distinction.....'Fighting Cancer' made my hair fall out. I also put the positive spin on it that since my hair is falling out it must mean the medicine is really working. It'll be 2 years in March that I ended chemo (ACx4) and my hair has been back forever and my kids still remember those days, but they have moved on, as kids do. It's hard when you have little ones, but it's certainly doable. I wish you all the luck in the world.

mdg · January 2011

Thanks ladies for all the support. I met with another med onc today for a second opinion and it was very interesting. SHe at first said no chemo recommended but then when she reviewed my questions and concerns and really listened, she was not sure if she would recommend no chemo. SHe is reviewing my case at tumor board and doing some research on new studies relative to additional risk reductions from ovarian oblation. She also reviewed my case on adjuvent online at that indicated a 5% risk reduction over tamoxafen alone. She said the driving factor on the 5% was my age and the fact that I have a Grade 2 tumor. She wants to review the individual components of the oncotype score test results and evaluate what really drove the score to 17. I am meeting with her again in 2 weeks. I really liked her interest and the fact that she wants to review some newer studies since I am in a little bit of a gray area. I don't have answers yet, but I glad I am getting a second opinion. Will keep you posted.

otter · January 2011

mdg, it sounds like that new med onco is a keeper! I like the thoroughness of her approach, and the fact that she is not wanting to make decisions without gathering all the evidence and checking with her colleagues. IMHO, that's how difficult decisions ought to be made.

I didn't say anything about this earlier, but I will bet that a 4-yr-old is more resilient than many of us realize. What to do about young children was a huge topic of discussion when I was being chemo'ed 2-1/2 years ago. I think the consensus was that a mom's cancer treatment was harder on the older kids -- 8, 9, 10 years old, and middle school -- because they knew more about what was really going on and might have even experienced the death of a loved one. Young kids, not so much.

My granddaughter was 2 when I went through chemo, and she thought my bald head was funny. I didn't wear a wig -- I just wore scarves and ball caps. The first time she saw me with my cap, she hesitated for a moment; so I got down on the floor next to her and offered to take off my cap so she could "feel" my head. She did exactly that -- she reached up and rubbed her hand across my bald scalp. Then she giggled, and we went back to playing games together as usual. I don't know what my daughter-in-law told her about my baldness, or what else was going on; but there doesn't seem to be any after-effect.

It would be different if it was my own young child, of course. Is there a thread about this, elsewhere on these boards? Maybe in the forum that was created for "young women"? Hugs to you as you figure all this out. And, I hope chemo is not in the cards for you; but if it is, we'll be here for you!

otter

Halah · January 2011

I started a similar thread as this, and many women said if you have the opportunity to do chemo, "then do it". It's like having an additional insurance policy to just tamoxofin alone. If I had kids, perhaps I'd had chemo (my test score was 16). I had a low grade tumor and all the other variables were good (if you want to call cancer "good").

Glad you found this onc!! I agree, she's a keeper.

Anonymous · January 2011

Sounds like a great Onc, mdg!! It really helps to have someone who has a similiar line of thinking as yourself so that you feel comfortable taking their recommendation. Best of luck to you in your decision making!

If you were stage I, did you get chemo???

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