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Please Advise Me!

deecaf1
Posts: 58
Joined: Dec 2000

Hi there,
Because I had DCIS and a mastectomy the surgeon said I did not need an oncologist. He put me on tomoxefin and said I'd need to be on it five years. He gave me no other information on my cancer other than the fact that it was Grade 2 - 3 and some of it was quite aggressive. However, he was sure it was all contained within the breast that was removed.
My question: I have Probable MS and other autoimmune diseases and the Tomoxefin is creating havoc with me. I just found out yesterday that my cancer was Estrogen Negative. If that is the case do I need to be on the tomoxefin? My PCP didn't know and I don't see my surgeon until December. I would appreciate your input. Thank you. Dee

isaiah4031
Posts: 243
Joined: Jun 2001

Hi Dee,
I would definitely get an oncologist. To have a cancer diagnosis means that you need the best capable physician to care for you and that would be someone who specializes in cancer. I am estrogen negative also, but have tamoxifen. There are different reasons why. I defintely would see an oncologist ASAP, especially with your other medical conditions. You may require a different type of treatment plan to compensate for this. Let us know how you are doing. I'll be praying for you.
Love, Jayne

deecaf1
Posts: 58
Joined: Dec 2000

Hi Jayne,
Thank you for the quick response. So you too are estrogen negative and on tomoxifen....that is interesting. My PCP told me I didn't need to see an oncologist and I need her referral to go to one. Because there is no follow up treatment for me other than the tomoxefin and the six month check with my surgeon she said I don't need one. I have my yearly mammogram on my remaining breast in a week....I think I'll drill them when I go in there. My surgery was last Dec. and I have always felt kind of in limbo because there was no discussion of where I go from there etc....Anyway, thanks so much, I appreciate your input. I hope you are doing well. What procedures did you have? Were you DCIS? Take care,
Dee

cruf
Posts: 931
Joined: Oct 2000

Hi Dee. I ,too,had DCIS,I'm taking Tamoxifin but I'm estrogen positive. My surgeon also told me I didn't need an oncologist but I could go if I wanted. I trust my surgeon so I didn't pursue anything. If I were you, I would call my surgeon before Dec. 1 and let him know the Tamoxifin is bothering you. Maybe there is something elas you can take. Good luck! E-mail me anytime! Cathy

deecaf1
Posts: 58
Joined: Dec 2000

Hi Cathy,
Thanks for the input. I thought only estrogen positive women were on the tomoxefin, but I've now heard of several others who are negative and on it. I will check it out immediately. Thank you! You take care. Dee

oliveoyl
Posts: 16
Joined: Jul 2001

Hi Dee,
I was ER Negative also. It is my understanding that if a woman is post menopausal she can gain some (minimal) benefits from using Tamoxifen. I agree with the other gal who suggested that you contact someone immediately & tell them about your adverse side effects.

deecaf1
Posts: 58
Joined: Dec 2000

Thank you! I will be calling both my surgeon's office and my gyn who referred me to him. She had been totally against my going on it until he talked to her so she should have some input. I had been thinking that my other illness was causing the problems and that is still possible. But, I felt okay until I started the tomoxefin...so possibly not. Anyway, I will check it out ASAP.
Thank you and take care. Dee

deecaf1
Posts: 58
Joined: Dec 2000

Hi Auntie,
Thank you so much. I am setting up appointments today to speak with both my surgeon and my gyn doctor. I had genetic counseling with the cancer center and will also call them for input. Thank you so much and God bless you! Dee

deecaf1
Posts: 58
Joined: Dec 2000

Hi Joy, Thank you for the information. I have called and requested my path reports and they should be here soon. I also have a call in to my surgeon and gyn doctor (she is the one who sent me to him) and will check out oncologists also. I know I won't rest until I get some answers. I am not sure it's the tomoxefin causing my problems but I need to find out for sure.
Thank you again....take care. Dee

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

You need an oncologist right away. A surgeon has no idea on how to treat a problem medically. He is a cut & chuck you out doctor. My surgopn of 21 years ago also said I don't need an oncologist & I beleived him & here I am with advanced metastatic disease. If your cancer is ER- you don't need Tamoxifen at all. It will do no good. That's why you do need an oncologist. Let me know how you get on. Love Pam

sunnyone8181
Posts: 4
Joined: May 2001

I cannot believe the surgeon did not refer you to an oncologist. Go on your own and take all reports with you.You must be under the care of a physician who's specialty iis cancer. I have learned the hard way to be YOUR OWN best advocate. Please, Please go see an oncologist..this is nothing to take lightly and he/she should be treating you..NOT the surgeon !!
Sunny

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