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Distant recurrence risk
My oncologist ran Onco DX score for me which came back as 16. I asked her to run RSClin and my results came back 3-4% less chance of distant recurrence in 10 years with chemo (regardless of which endocrine therapy I choose). That puts me at 89-94% DFS without chemo. I’m trying to understand is that 3-4% a huge difference?
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I travel 7.5 hours to Mayo because that is where every staff member I encountered treated me with respect and compassion. Totally worth the time and expense to me to feel like I am being listened to and cared for.
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8 ReactionsI travel 3 and a half hours each way to go to Mayo Clinic for some of the same reason. Plus I feel they are excellent clinicians and all staff is well trained.
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4 ReactionsHello, I am someone with a double mastectomy and no reconstruction diagnosed with LCIS, lobular carcinoma in situ, which may be a precursor to lobular cancer. I asked my oncology surgeon if I should start on an endocrine therapy to further reduce my risk, she said no due to risks not justifying benefits. I am 52 years old and still having my period so my only option is Tamoxifen, which has the uterine cancer risk that is making me hesitate. I am thinking of waiting until I reach menopause and then start on an AI. Also, I feel that routine screening is important and am wondering whether breast mri for someone without reconstruction is possible. Does it involve laying on our stomach as if we had breasts except there would be nothing to insert into the hole where the breasts normally would go? Lastly, if you had continue doing yearly MRI’s,do you think your recurrence would have been caught earlier? Thanks for any input you can give me.
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4 ReactionsHi @mayo101 -- yes, you can still have a breast MRI after a mastectomy. Seems odd, but I had the MRI the same way as before the mastectomy, lying on my stomach over the empty holes. When I stopped having MRIs, I had very thorough ultrasounds so I don't feel like anything would be different if I had MRIs all along. Just my gut feeling. I also liked that in ultrasounds, I could ask about spots that felt odd to me and they would do a focused check on that spot and say, bone, scar, etc. Ultrasounds are so much easier. I don't know about you, but I found the superman position for the breast MRI very difficult for my 54-56 year (at the time) old body with neck, back and shoulder problems. I didn't turn down any MRIs and followed advice, but I was perfectly comfortable with just ultrasound. The last MRI I had I was told that was a miscommunication with her staff and they were supposed to order ultrasound for me. Keep doing your self checks monthly because with my recurrent cancer I could easily feel mine in my chest wall. I had ductal breast cancer, not lobular so I don't know if anything would be different for you. My ultrasound one year before my recurrence was clear, but my recurrent cancer is super aggressive and fast growing so I don't think they missed anything earlier. I also have two different breast cancer mutations that make me more vulnerable.
I was post-menopausal. It was actually surgical menopause since I had my ovaries out at the same time as the mastectomy (due to BRCA2+). My oncologist thought I didn't need Tamoxifen or any med in my case and I was a CYP2D6 poor metabolizer so he thought it wouldn't work anyway. He said there was an alternative med for poor metabolizers, but more expensive and I imagine the same risks if it served the same function. Told me not to take that either. My current oncologist disagrees with the original assessment. I understand your concerns about side effects/risks. I've turned down a lot of meds in my life due to my fear of side effects.
I suggest the same thing to everyone: don't hesitate to get a second opinion on your treatment plan especially if you're not sure which way to go. It's nice to know everyone is on the same page. Insurance will cover it. No reputable doctor has an issue with you seeking a second opinion and most welcome it. Would things be different if I had sought out a second opinion??? Maybe. Blessings to you. 🙂
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5 ReactionsMRI is possible with post mastectomy flat aesthetic.
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1 ReactionMy cousin has been on Tamoxifen for years with no side effects. I read that the Uterine Cancer risk is very low, but you would have to ask your doctor about that. It is very good for your bone health though, while the Aromatase therapy you might take after menopause is not. So, there is that. I also was diagnosed with LCIS and my surgeon said it was nothing to worry about as it rarely goes outside the ducts. She did remove it though, which brings me to your first sentence. How do you have DCIS without breasts and if you have had a mastectomy, they would surely have removed it? I wonder if you can still have a mammogram, even after your surgery? Questions for your doctor! I hope all goes well for you going forward. Blessings!
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3 ReactionsHello, yes, I am wondering the same thing. Does anyone know if after double mastectomy without reconstruction, can you still have mammograms? Breast MRIs are still possible. My doctor tells me no screening is needed except just feeling the chest wall area. But by then it is kind of late in stage. LCIS is often times mutifocal and bilateral. They discovered it in my other breast too through post mastectomy biopsy while mammogram previously only showed in one breast. A double mastectomy does not totally eliminate the risk for breast cancer. Still some breast tissue remaining.
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4 ReactionsWhat kind of tests did you have to find out you’re a CYP2D6 poor metabolizer? Did insurance cover the tests? Thank you.
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1 ReactionHi @brighterdays, my oncologist ordered the test to specifically test the CYP2D6 enzyme to see if I was a good fit for Tamoxifen. It was either a blood or saliva test. Insurance covered it since I had breast cancer.
Later when my son turned 35 and needed to test because of my BRCA2 mutation, my breast surgeon recommended Color Genomics http://www.color.com for him so we used that. We ordered the extended package that included 30 cancer genes, some cardiac and other stuff, plus a whole list of enzymes needed to metabolize meds. I ordered a kit for myself too since it had the enzymes and many other cancer tests I didn't have before. The current price for the extended package is $249 for all that or $199 if a family member has a cancer mutation. Not covered by insurance at that time. Not sure about now. It also included discussing the results with a genetic counselor. We did it four years ago and at that time it required a doctor's order or a copy of the lab report showing a relative had a mutation (we submitted my lab report). I discovered another cancer mutation and that I was a poor metabolizer for lots of enzymes. I felt vindicated for all the times I told doctors so many meds did nothing for me (like pain meds) but had extreme side effects and they rolled their eyes.
10 years ago, my BRCA1/BRCA2 testing was only covered by insurance 10 years ago because I had an aunt and cousin with breast cancer. Things may have changed. Ask your breast cancer team to order whatever is covered.
Now when a doctor suggests a new med to me, the first thing I do is is google it by entering both the drug name followed by "metabolic pathway" in the search bar so I can see which enzymes are needed to metabolize that med. For example, try "tamoxifen metabolic pathway" and when you scroll down through the results you'll see "tamoxifen is metabolized via CYP2D6." Very helpful to me. Best of luck with any testing. 🙂
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9 ReactionsThank you for such detailed insight. My oncologist mentioned CYP2D6 to me and told me to contact my insurance myself to see if they will cover the test. I would think it’s her job to do that. She thinks based on my race I may not be able to metabolize it.
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