Am I alone?

SheilaMarie · January 2009

I was diagnosed in June 2008. I had IDC, Herr 2 pos w/neg lymph nodes. Had a simple mastectomy. Had opininions from 2 different oncologists with very varying treatment regimens. Also saw a radiation doctor who said I didn't need radiation and she also questioned why I was having chemo with such clear margins. My so called tumer, was .08 centimeters, stage 1. not near chest wall etc. Anyway, my gut from the beginning was not to have chemo as I don't react to things like other people. I have numerous allergies to medications and environmental, but I chose to go ahead with the chemo, Why wouldn't I right?? Well one week and one day after my first treatment I wound up in a cardiac care unit.( I had had all the tests, mugga, ekg, blood work, bones scans etc.) passed all with flying colors. After having a heart cath done, they found no blockage which was great, but no answer to the symptoms nor the ekg (bad) done during the attack. I stopped the chemo. Is there anyone out there Herr2 pos who opted not to have chemo?

How long has it been? Does the cancer always come back?

MicheleS · January 2009

Shelia Marie,

I don't know the answers to your questions. (I'm new at this.) However, I *do* know that cancer doesn't always come back. If I were you, I'd get another opinion. Also, have you had PET and/or bone scans? That may set your mind at ease... I dunno, As I said, I'm new to all of this... I hope that someone more knowledgable than myself will pipe up. I just didn't want you to feel that no one was reading your post.

Michele

Jenniferz · January 2009

Sheila,

Two years ago when I was diagnosed, my doctor said that due to the tiny size of my tumors (one IDC, the other DCIS), and the fact that I had chosen a mastectomy over lumpectomy, I wasn't a good candidate for chemo, and that the chances of reoccurance were low. Because of insurance purposes, I had to change oncs., and that doctor said the same thing. I am triple positive. Since I didn't get chemo, no Herceptin for me either. I didn't really like that, but that's what happened, and so far, am cancer free!!! And that's the direction we are all striving to go.

Cancer can come back....................the thing is that no one knows for sure who's will and who's won't. If you are not comfortable with your doctor's advice, then by all means get another opinion. I'm just letting you know that so far so good for me.

If you want any more information about me, just send a pm.

Jennifer

dlb823 · January 2009

Hi, Sheila ~ Did you have the Oncotype DX test, to see what your recurrance rate would be without chemo? I'm not sure if being Her2+ precludes having that, but maybe it does. Otherwise, it might be something to consider now. I think you were smart to at least try the chemo, and I'm sorry you had such a serious problem you did with it. Which regimen were you on? If you don't have chemo, does that mean you would also forego Herceptin? Deanna

Debbi5108 · January 2009

Sheila,

I am not Her 2 + but I had a similar incident first treatment as well and I was doing DD A/C ended up in the hospital with double Pneumonia and plural effusions couldn't find any other reasons for all the problems and my 11 day stay and almost died however next treatment no problems the after those 4 were done started Taxol seemed okay but the heart was acting funny had all the test again nothing come to find out I am allergic to what?????? BENADRYL!!!!!! can you believe it the one drug they give you to prevent allergic reactions and I'm allergic to it, I am allergic to alot of meds and foods and things but benadryl how embarrassing, my onco said I was definitely different anyways they stopped the benadryl I now take a Claritan Tab the morning of chemo and all is well so you might ask your doctor about this possibility, it is rare but, does happen.I too react different to most meds so I understand your frustration and would gladly have my doctor send a letter stating that this although rare could be the culprit. I am by no ways trying to sway you one way or the other but, Jennifer is right Cancer CAN COME BACK, the treatment plan is like an insurance plan to give you a better chance of that not happening and by no means am I trying to scare you because ultimately it is Your decision just trying to be honest however, I do think you should speak with your doctor as there has to be some other options out there for you and I will pray that someone can help you find and explore them. Please feel free to PM me as I will try to help anyway I can, My fellow allergic sister.

Deb

juliejfsrj · January 2009

I am her2 positive and elected not to have chemo. My echo came back too low for adramyacin, and as I have arthritis they said I would have serious problems with the taxanes, but would do great with cytoxan. I opted out, did radiation, tamoxifen and herceptin for one year. Hoping I made the right choice, but as I read about the long term damage from chemo, I simply couldn't make myself go through with it.

SheilaMarie · January 2009

Julie, thanks for responding. My gut from the beginning was not to have the chemo, for the same reasons as yours. I have watched loved ones go through it and I didn't want to do it. I guess we just have to hope & pray for the best. I feel good in my heart about my decision, but there is that little doubt in the back of your mind. I guess it will always be there. How long has it been for you? I wish you the best.

REKoz · January 2009

Hi- My name is Ellen and I am beginning chemo tomorrow. Such a wierd place to be since I feel the best I have since my Nov, bilateral mastectomy. Chemo had been delayed because of a nasty post of infection and subsequent scar revision which finally looks great. No node involvement for me 90% both ER\PR + and Her2 3+. I wasn't even given the option of not having chemo. Sure, I could refuse but it was not even presented to me as a consideration and I consented to port placement during surgery. Glad for that! Seems the efficacy of the Herceptin is better when administered with chemo. And as the Doc. said, you just never know, even with neg nodes if some sucker slipped by and brought that agressive HER2 with them. I DO NOT want to do chemo, but I'm so afraid of regretting it down the road. The thought of EVER having to do this again would make me then think long and hard whether it was worth it.

We ARE all in this together and respect for other alternatives is a given in my mind. I was lucky (I think) to get approval for Abraxane rather than taxtore due pre existing nerve issues with my hands. This drug does not require the steroids (decadron-correct?) so to that end, I should suffer a tad less I hope. I will also be getting carboplatin and herception for a total of 12 treatments. 3 weeks on, one off which brings me into the beginning of May. Herceptin thereafter every 3 weeks for a year. Is anyone out there familiar with this protocol? I HAVE to go back to work next week and having no idea what to expect is driving me nuts.

Good luck everyone,,,I think we need it. Howeverk, we shall grow in spirit in ways we can't even imagine yet. That's the thought that gets me by so far!

Ellen

jules3 · January 2009

I must direct back to Deanna and the Oncotype test...very very useful....that made the decision for me to not do chemo...it showed that it would not benefit me/or rather, be worth going thru all the side effects for maybe a 1% less chance reoccurence. My oncotype score was 11. That gave me great peace of mind. And I also dont know how your HER+ status affects that? What was your grade score? My tumor was also .08 cm/ stage 1/ neg nodes/ grade 1.

I m proud of you for trying the chemo.... and I pray that God gives you a very strong gut instinct in your next steps...I know He has for me...

Hugs Jules

ICanDoThis · January 2009

Ellen - Her2+ would give you a high Oncotype score. Recent research has shown that Herceptrin is the treatment of choice for Her2+ tumors, that it works for even small tumors, and that works best when given in conjunction with chemo.

Hope this info helps

princesstiny99 · January 2009

Hi Shelia,

I am a 14 year old child in middle school and I am doin this project on Breastc cancer and i read your story and i like it and I just whant you to know that we are rasing money for people like you and i whant you to know that you are not alone and i hope that you make it through this I am praying for all of you to make itand i realy cair. My friend and I are rasing money to help find a cure so please hang in their and i will keep you in my thoughts.

- you are not alone

yanaboo · January 2009

hi my name is yana and i read and i really like it . i just want to let you know that i an rasing money for you so they can fin a cure i hope that it work i really want this to work . i am only 14 but i really full ,for you i want you to have everthing thing that we have i just want you to have a change to live again . i know in my heart that things are going to be okay love always tiana payne Kiss

REKoz · January 2009

Thanks Krista's Mom-

By the way, I have a Kristen..always liked the Kris for a girl! My oldest, she's getting married on July 25th! The Dr. and thereby, me are confident that I should be feeling much better by then after completing chemo in early May. It takes me a while to get over my sadness that this totally via regular screening diagnosis has taken so much attention from what should be all hers, But she, her sister and MANY others have been wonderful at getting me past those thoughts.

You are right, had I not had this pesky HER2 +, I surely would have been given the option to skip chemo. I guess in some ways, it's easier not to have to make that choice. It sure as heck is not high on ones list of must haves! I had the same issue with my surgery. With small breasts and 3 quandrants requiring work (2 pappilomas in sep quads), lumpectomy was not an option. Nothing from nothing leaves nothing right? Everyone teases me that I will have a much nicer chest then I ever had before. I guess that will be nice...always wanted a "real chest" but not enough to go through any surgery for. And certainly NOT this!

Oh well, I truly believe there is a purpose for us here somewhere. Surely we cannot help but become more spiritually enlightened!

Thanks again!

Ellen

Sassa · January 2009

Thank you, Princess and Tiana, for your concern.

Let us all hope that medical science comes through so that girls your ages will never have to share our experiences.

Am I alone?

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