Am I making the right choice?

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Paulette23
Paulette23 Member Posts: 499

I had stage 2 grade 3 ER/PR positive HER negative cancer. The surgery removed the tumor which was 2.1 centimetersI had to have a second surgery which contained DCIS to make sure the margins for clear. I had for nodes removed and they were all negative.I saw two doctors both with the same recommendation of cytoxan and tamoxifin..foll o wed by tamaxifen..my oncodx was25...dead center of grey zone. Adding to it all I have lupus, mixed conn disease and other overlap autoimmne pbms and damage from those. I hope choosing to do chemo will be a correct choice....It scares me with all the comorbities and damage from past med pbms. My labs since IORT single dose rad shows my liver function and kidney function was slightly off.I'm concerned that doing chemo will make my kidneys and liver really screwed up.is anyone experiencing or have experienced a similar situation. The tumor was very aggressive and appeared out of nowhere.I am scheduled to start chemo on Wednesday but I am petrified of the side effects and possible long term damage.I know sometimes they will prescribe cytoxan to treat lupus and other autoimmune conditions.I

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  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2013


    Paulette, deciding on whether or not to do chemo is such a personal thing, since we each know our own bodies and our risk tolerance better than anyone else. However, with a Grade 3 bc that was slightly over 2 cm, and an OncotypeDX score of 25, I would be more concerned about you if you chose not to do chemo. I think that would be the more risky choice.


    As far as the lupus, etc., I've been surprised at how many women on BCO had some type of autoimmune condition prior to their bc dx. I would just be very sure that you have a medical team that's had experience with patients with similar pre-existing conditions, so that they have firsthand information to draw on. I'm guessing you meant a chemo regimen of Taxotere & Cytoxan. The Taxotere can be especially hard on muscles, so you might want to ask your onc how that could impact anything you already deal with due to the lupus. It's my general belief (although I'm not a doctor) that some of the problems with Taxotere are not due to the drug itself, but to some of its additives or carriers. There's a similar drug that's gentler (can't think of its name at the moment) you may want to ask your onc about. It's mostly used if patients can't tolerate Taxotere, and ins. co's won't automatically subsitute it because it's considerably more expensive. But, in your situation, with the existing Lupus, it might be worth asking about. I will come back and give you the name when I think of it, unless someone else does it first.


    Good luck, and remember, you can always stop if you can't tolerate it, and anything you get will probably be better than nothing at all. (((Hugs))) Deanna

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    I've had pbms finding onco with knowledge of my multiple autoimmune pbms and damage.... I'm afraid not to pursue and to.....I wasn't given any time to decide......

  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2013


    Paulette, there is research showing no difference in outcome for women who start chemo 4, 8 or 12 weeks from their last surgery. In other words -- and although it's never recommended that anyone wait longer than they have to -- depending on when you had your surgery, it may be okay to take another week or two to either find a different onc, or give yourself time to make your decision without feeling rushed.


    I'm personally very keen on NCI-designated cancer centers, as explained on my bio page. Here's a list: http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center


    It might be worth getting a second opinion at the closest one, simply b'cuz they see the most bc patients, and have teams of doctors under one roof, including experts in lupus, etc. If the closest one isn't convenient for actually getting chemo, you can always take their recommendations back to a more local onc. That's what I did. But I'd personally be leery of using an onc who doesn't have experience pertinent to your situation. Deanna


    PS ~ The chemo I couldn't think of above is Abraxane. I would definitely ask your onc about it.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    dlb823....funn I went to moffitt...they blew me off w my complex history...that's why I'm perplexed. ....

  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2013


    Paulette, so sorry to hear that. If you haven't already, maybe start a new thread about looking for onc recommendations in your area. Be sure to put your location in the title. That would be my next best suggestion for you, and hopefully you'll get some great, firsthand recommendations from other BCO members in your area. Deanna

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    thanks...hope you're well!!!

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