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I did have lymphedema, although atypical where it was a clogged vein all the way to my wrist. My doctor referred me to a physical therapist that specialized in lymphedema and was great. It was quite a painful process with about 6-8 follow up visits where she had to pull and strip that vein but finally it is unclogged and the expectation is that this won't happen again. I also follow the physical therapist's exercise program. I was ready to purchase a compression sleeve, but was advised that those can also kick off lymphedema for someone that doesn't have it. I do have a gardening sleeve I wear for outdoors for protection as one little nick can start an infection. I think the main thing here is to be ever vigilent.
Surgeons now are re-defining how many nodes are taken. At my local medical center they take many lymph nodes whilst where I went for my surgery (Oakland, CA), the surgeon believed less is more as the more you take the more likely for lymphedema. I, myself, undergo PET scan now every 6 months as the second lesion found on MRI is more aggressive and can show up any time, anywhere. The second lesion is neuroendocrine cancer which is rare, although it is being found more and more as pathologists start using the proper dyes. I am grateful every day that I requested breast MRI as I was concerned following my first lumpectomy which showed invasive ductal cancer that "what if my cancer is in the other breast." My surgeon agreed and that is where we found this second aggressive lesion in the same breast. Had I not pushed for this, my outcome would be quite a different result. Never stop being your own advocate.
I am so sorry you are going through all of this – the shock alone is enough. I had 3/7 cancerous nodes with one eroding into the lymphatic system. Because it had eroded (opened and went beyond), I had extra radiation into the upper area. However, it was stressed to me that because of that it is highly likely cancer is lurking elsewhere. We just cannot let the fear take over, we must focus on one day at at time and continue on. You can do this…we all believe in you.
I am 68 now and went off anastrozole after a short periods of time and letrozole due to the severe bone pain. My doctor let me take a break and then started me on exemestane…what a difference. I can now walk without severe pain in feet and ankle, elbows, hands, etc. I have recently switched from taking it at night and now take it in the morning. I was having insomnia after sleeping 2-3 hours. Now that I am taking it in the morning, I sleep 7-8 hours a night…hoping that will keep up! I also go to therapeutic water exercise twice weekly and find this helps with arthritic pain.
Tue, Nov 12 10:59am · Mastectomy and breast reconstruction pros and cons? in Breast Cancer
Sandy, I can only tell you what my surgeon advised me. I was ready to have mastectomy and surgeon told me no as even with mastectomy, women can still get breast cancer as they cannot remove all tissue. For this reason, I was given partial mastectomy. She also advised me that with full mastectomy, due to all the nerves running through that women oftentimes would have nerve pain for a lifetime. Ask questions from different specialists and go for second opinions with surgeons. My first surgeon was all ready to just go for full mastectomies and I am glad that I opted for the second advice, but it is purely your choice. All the best to you.
Mon, Nov 11 11:40am · Portal vein thrombosis (PVT) after breast cancer treatments in Breast Cancer
Hi Sparklegram – no, I'm not suggesting you try tamoxifen, just maybe look at the aromatase inhibitor you haven't tried. It's a difficult decision. Read as much as you can before deciding what to do. For me, I cannot take tamoxifen due to family history.
Mon, Nov 11 11:10am · Portal vein thrombosis (PVT) after breast cancer treatments in Breast Cancer
Hi there – no, I am on exemestane. It is similar, but make up must be slightly different as I'm not having the joint pain as in the other two aromatase inhibitors. Because of a family history of blood clots, I am hesitant to try Tamoxifen. For me, right now, I'm happy and think I can keep going on this one. Hoping it stays that way because 10 years is a very long time for the bad side effects.