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3 days ago · Preventative double mastectomy in Breast Cancer

Jody
I'm not in that category but in a 'similar' category. When I was first diagnosed I was a Stage 0 cancer (maybe I'd get invasive cancer, maybe not). Two years later I had invasive cancer, but with lots of careful follow up on my part I caught my cancer at Stage 1. If I could go back in time I would have removed my breasts at the Stage 0 pre cancer stage and saved myself the worry and extra concern about recurrence. But, I didn't know what would happen and neither did my doctors. It could have been a one time thing and resolved. If you decide to wait I think the most important thing is to be really, really, really diligent about follow ups and make sure you trust your doctors, understand your tests and do lots of research and outreach. I am glad for all the time I spent monitoring my situation because I was able to catch the cancer early. Hugs and hopes you're one of the lucky ones who won't even get invasive cancer!

Sun, Jun 30 9:11am · Can’t get lymphedema if you only had sentinel node removed?????? in Breast Cancer

Sandy – My husband was diagnosed with a Stage 4 cancer of unknown primary about a year and a half ago. They said he would die in a few months. Thankfully they have been wrong but we still struggle with what the heck is going on. During our oncology visit to discuss options for treatment and getting the thin diagnosis of 'we just don't know'………the oncologist got up and said she had to see another patient (15 minutes in to the appointment). She said the patient she needed to see was 'really sick'………..like a terminal man isn't. She was also my oncologist. We changed immediately. I was taking notes for my husband and holding a ball point pen. I was so angry when she got up and left I looked down and I had cracked that pen in half. Trust me, I'm not that strong, ha ha.
We now have a doctor who listens, who is compassionate and never scoffs at our questions or concerns. It's too important not to have a doctor who will work with you.
Hugs

Thu, Jun 27 11:54pm · Can’t get lymphedema if you only had sentinel node removed?????? in Breast Cancer

trixie1313 – If it makes you feel any better…….several years into this all I have to do is look at a donut and I gain 2 pounds…ha ha

Thu, Jun 27 4:15pm · Can’t get lymphedema if you only had sentinel node removed?????? in Breast Cancer

trixie1313 – isn't it great not wearing bras. That and I lost some weight I needed to drop through the whole ordeal….that's the only good thing I can say about cancer, ha ha!

Thu, Jun 27 4:14pm · Can’t get lymphedema if you only had sentinel node removed?????? in Breast Cancer

I am on my fourth oncologist now (one time was because of an insurance change) but two were because it just wasn't a good fit. Keep working until you find someone you trust and who listens. Its too important not to do that.
Press for what you feel comfortable with for blood pressure checks and blood work sticks and such. Doctors haven't all caught up with the lymphedema risk yet.
Hugs

Thu, Jun 27 12:21pm · Can’t get lymphedema if you only had sentinel node removed?????? in Breast Cancer

I complained of arm and hand swelling about 6 months after my surgery. It was on going. My oncologist and surgeon said….it couldn't be lymphedema because they only removed one lymph node (hmmmmm) so I insisted on seeing physical therapy and massage therapy myself via my surgeon. After another couple of months, at a regular oncology visit my doctor noticed the swelling (finally) and put in an actual referral and recommended my surgeon revisit my situation. That is when I had a second surgery to remove additional tissue which helped a great deal.
You know your body and you will have to push them to address your concerns. Sometimes a lymphedema specialist can look and see better what is happening. There aren't many (unfortunately). I got lucky with a great massage therapist in my doctors practice who sent my records to the doctors and confirmed my lymphedema. I would press your doctors further and don't worry about 'hurting their feelings' or going against their opinions here. Not all doctors are very informed or concerned and you want to catch it early if possible….it's easier to treat and manage.
Keep us all posted and Hugs

Thu, Jun 27 12:15pm · Can’t get lymphedema if you only had sentinel node removed?????? in Breast Cancer

Good for you! Good for the young surgeon too………I can't imagine the pain they must see everyday too. Since I have no breasts I like 'messing' with the nurses and doctors when they offer me a gown before exams. I just pull off my shirt and sit down, explaining I have less than a man to 'hide' these days. I actually consider gardening without a shirt and would in my own backyard but the result is a little jarring from my surgery and I don't want to frighten my neighbors!!
Hugs and Laughs to you…………..hang in there with the lymphodema

Wed, Jun 26 11:18pm · Can’t get lymphedema if you only had sentinel node removed?????? in Breast Cancer

Sandy,
I just read the article Collen referenced in her post and want to add that my body decided to develop a great deal of fluid post surgery. I had seromas that required draining every 2-3 days post surgery. My issues were my body being 'me' and are probably not typical but possible. I still use the knowledge I gained having lymphedema in keeping my body healthier today. I'm grateful my lymphedema has mostly resolved and that I had a good therapists to guide and support me.
Hugs