Tamoxifen Vs. PBLM

alucasrn · July 2009

Hi, I am new to the site. I am extremely confused and could really use some guidance.Last January my mammogram came back suspicious; biopsy determined 3 lumps in left breast to be benign fibroadenomas. Now I have to have mammogram every 6 months followed by MRI every 6 months. The Breast Cancer Risk Assesment Tool puts me at high risk with a score of 44%. I was tested for the BRCA gene deformity and DO NOT have them. My oncologist has given me the choice of taking Tamoxifen for the next 5 years along with blood thinners or have the PBLM. I am 44 years old and in the middle of Menopause. I have been happily married for 26 years and have 3 children. I am terrified of the Tamoxifen but I am terrified of these lumps in my breast. I too am not handling the idea of "just waiting for the diagnosis." Any thoughts or ideas? If you are in the same situation, I would really appreciate your opinion. Thanks!

HelloFromCT · July 2009

Hi alucasrn,

I'm at high risk too due to ADH and some other risk factors. Like you I am afraid to take Tamoxifen (but also afraid to do nothing). After thoughtful consideration I decided I want to have the PBLM. This is not for everyone, but I don't want to deal with the constant worry and the increased anxiety everytime a screening is near. Also, I regularly get 'sensations' in my breasts from cyclical changes or whatever (?) and now I am worried everytime I feel anything that it's bc. The peace of mind alone that would come with the PBM is worth it to me and with today's reconstruction possibilities, it's not quite as scary as it once was. Again, not for everyone, but it is a valid option for those who choose it.

Keep us posted about what you decide. I am in the beginning stages of appealing to my insurance company and I hope to have surgery in the Fall. Fingers crossed here. :-)

Anonymous · July 2009

Can I ask if there are other risk factors involved? Benign fibroadenomas, by themselves, generally do not require preventative measures such as tamoxifen or PBM surgery. Those are considerations if someone is BRCA positive or high risk from atypia (LCIS) or perhaps they have many other additional high risk factors. You said you were BRCA negative and didn't mention any other high risk conditions, so I'm wondering why they are recommending tamox or PBMs for your situation.

Anne

Stonebrook108 · July 2009

Why would you have to take Tamox. if you only had fibroadennomas? I had fibroadenomas and was never even discussed. I did end up with LCIS and that with the fibroadenomas the Dr's said I would have to take Tamox. due to the LCIS. So I decided to have PBM and reconstrution and be done with it.

good luck

Ann

alucasrn · July 2009

Hello awb and Stonebrook1: My oncologist recommended taking Prophylactic Tamoxifen for the next 5 years in order to decrease( by 50%) my risk of having BC in the next five years. The BCRAT scored me at 42.3%.My mom died with breast cancer (unknown type) mets to the brain; my sister has DCIS; I have had a biopsy already; I started my period at age 10; too many years to count of hormone therapy treatment for menorrhagia from age 10+; first child at age 21; and I have a BMI of 35

HelloFromCT: I am so glad to hear that someone else has what I call "the cancer thought" in my breast everytime the fibroadenomas are sore. I am thinking it must be cyclic because they are only sore at certain times of the month. I have one fibroadenoma at 3o'clock on my left breast and everytime I put on my seat belt....I can feel it and my mind goes straight to a dark place. My oncologist did not mention having the PBM until my third visit. She said that most women do better with having their breasts removed if it is their idea in the first place. She told me that they have found that when they tell a woman she must have a PBM, she tends to have more trouble accepting it. I took this to mean that since there was no rush, they just gave me some time to consider all of my options. I also have Fibromyalgia and the Breast MRI is like a torture machine!! All of the Dr.'s visits are taking their toll on me. I have to go for the ultrasound, then the mammogram, then the mri, then to the surgical oncologist, then to the medical oncologist, then the nutritionist, and just when I think I am through......it starts all over again! I am a nurse and I understand why all this needs to be done but that doesn't mean I have to like it. Also, it has gotten to the point where I am very irritable and emotional before each visit and just cry and cry. Before and during every visit I am terrified of what they are going to find this time. It would be so nice to just forget about it all and just pretend everything is fine:)
About the insurance...please keep me updated. My dr. told me that my insurance would cover it with the risk I have but I haven't contacted them myself. Thanks!

lisasayers · July 2009

alucasrn I'm sorry for all that you are going through. It isn't easy. For ten years I dealt with "problem breasts". Had a milk duct removed and then has VERY cystic breasts which always needed to be biopsied, etc. Every year and sometimes twice a year I would get a mammo and then the ultrasound. Last September my 38 year old sister was diagnosed with bc so they sent me for a MRI, just to be safe, and that is when they found my cancer. My grandmother died from bc and so did my aunt. My Mom had another form of cancer and so did/do four of my uncles. I knew as soon as I was diagnosed that I would have a bilateral, as I didn't want to go through this again.

Long story short, I have my bilateral, did the chemo and am finishing up with my reconstruction. I declined taking tamoxifen, because that was MY choice. Everybody needs to do what is best for them. I do NOT believe in a one-size-fits-all treatment plan. And for me it was about the quality of life. I did not want cancer to define me, and it does not and I can honestly say that there are many days I don't even think about it.

You need to think about what is best for you. If you ever need to chat, feel free to PM me! By the way, I'm only 45.

Blessings!

Lisa

wildegoosechase · August 2009

Hi All,

I'm 39, married with two kids and at high risk due to family history. My mother died from BC, my grandmother died of BC and my great grandmother died of BC. My mother was negative for BRCA1 and BRCA2. I found a wonderful high risk clinic in my area and qualified for MRI and mammogram screening every 6 mos. I also began Tamoxifen with little side effects. However, my mother's decline and death in November motivated my sisters and me to pursue the option of PBLM. My sister had the surgery in April and reconstruction June. She looks wonderful and more importantly, her anxiety is gone. My surgery is scheduled for later this month. My surgeon was so kind. He told me I was making a good decision and said I could always come to the high risk clinic after the surgeries, but only to say hello. No more mammograms, MRIs, Tamoxifen. I watched my mother battle cancer for 16 years. There was constant chemo schedules, fatigue, anxiety, tests and scans, limitations on her life. My sister decided to be in control of when she would deal with the cancer risk, on her schedule, rather than waiting for it to possibly disrupt her life and take some control away. I knew that I would kick myself (hard) if I did not take this option and was later dx with cancer. I am also raising two children. My son has severe autism and would be impossible to care for if I were sidelined with cancer. We would have to place him in a group home. So obviously, my decision is an easy one. Since I am cancer free at this point, I am able to have some reconstruction options that I might not have otherwise, nipple and skin sparing surgery less invasive and no nodes taken. The women in my family were not lucky survivors despite good care and treatment. Wish me luck and feel free to contact me about the recovery. Since my sister just completed her surgeries I am well-informed about the process and know it won't be easy.

Tamoxifen Vs. PBLM

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