Calling all TNs
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Just got the results from my annual mammogram and MRI, both normal. I saw my MO’s PA and she could see edema around my breast still, 4 years post Treatment. The joys of lymphedema. Anyway, I’m 5 years since diagnosis, but my MO doesn’t count that. So in December, I will be celebrating 5 years.
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Congrats love!!! Gives me hope for sure!
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Congratulations, LovemyVizsla. I'm about a year behind you, so I know what a big deal that 5 year mark is.
As an aside, I also have had a tremendous amount of edema and was diagnosed with truncal lymphedema. I went in to see Dr. Ketan Patel of USC. He's one of the premier lymphedema specialists in the US. He told me they don't worry about truncal lymphedema at all. He said there are so many alternative pathways for the lymph to drain, that we're not at risk of cellulitis the way people with lymphedema in their arms are. I found that reassuring.
Again, congrats!
Trish
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LoveMyVizsla, great news! That must be very reassuring.
I'm just 13 months past final treatment, so I still have a ways to go. I search for some means to control my fate. I've been doing intermittent fasting since June, trying to push down my (already healthy) glucose. But it hasn't budged. Sure, I can still change what I eat around the edges. Yesterday I talked with a registered dietician. She said I might want to work on a diabetes diet/lifestyle, that it might help.
But as I talked with her, and later with my husband, and just thinking more about it since then, I think that "control" is largely an illusion. You know, aside from the cancer thing, I'm really healthy! That's true for a lot of us. I'm the right weight, I'm active, careful to eat mostly real food, have good relationships with people, yada yada. I don't have other illnesses or conditions. And still this happened. It's random shitty luck.
It reminded me of when my daughter was anorexic, about 30 years ago. At the time (and likely theories have been updated since then,) the theory was that anorexics were trying to take control over the ONE THING in their lives that they could. Everything else was beyond their control, but they could decide what and how much they'd eat. No one could force them to do something different if they didn't want to.
So is my search for a "better, healthier" diet or way of eating just a search for control over random shitty luck? Obviously, it's easy to eat in unhealthy ways, with a lot of highly processed foods and sugars and too much alcohol. But if you already have a decent diet and habits, how much difference can you make by being more obsessive about it? Probably not much. Some small % reduction of the risk multiplier. From 13% probability of death from bc in the next 9 years (my stat, as per Predict) to 12.4%? Or not??
And what's that 13% based on? The whole population of women like me relative to a few specific stats, but who are unlike me in a wide range of other ways. Argh. I wish I didn't know anything about probability and statistics.
Another one of my long musings here, because I know you all understand. Thanks for letting me share.
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I totally get it Mia. Completely with you on this. We do all the right things (well most of them) but still got cancer. There is always the element of random chance. Changing behaviour to reduce risk is worth doing, especially around smoking, alcohol, daily exercise, healthy diet and avoiding obesity. Everything else only seems to make a small difference. When thinking about percentage chances, I always picture 100 women standing in a row. A 1% difference in outcome has the effect of swapping places with the woman standing next to you, moving you towards the safer end of the row. It seems to me to be worth changing some behaviours to get a 1% improvement in risk. Anything less than 1% improvement is not really making enough meaningful difference for m. If the change in behaviour made a 0.5% difference, it would be like having 200 women in the row. Anxiety is an interesting one. There are views that anxiety and stress can “cause” cancer, but other studies seem to show that stress can empower you and it it your attitude to it that makes the difference. As long as you don’t let it overwhelm you, stress therefore can be positive. What does everyone think?
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Congrats Visla!!!
Regarding control/fear - I find comfort in 'doing what I can' re diet, exercise and supplements. I think I am in MUCH better health than I was at diagnosis. I have lost about 20 lbs and kept it off, I have no more inflammation/achy-joint symptoms, and more energy. Good sleep in a black cold room promotes brown (metabolically active) fat which you want for fat.
I have intermittent fears, like if I have a random ache somewhere my mind goes to C very quickly -- but so far none of my random aches has lasted.
My MO offered me imaging if I couldn't stand *not* having it but so far I have not. I think maybe next year, crossing that year 3 line, I will ask for a MRI or petscan to take a look at the rest of my body and know nothing is brewing.
Sending hope and love to my TNBC sisters.
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santabarbarian, I get that, and congratulations for working so hard and achieving better health.
For me, it's a little harder, because I was in excellent health when diagnosed. I weighed the same then as now. My activity level was a little higher then for various reasons, but not by much. I sleep about the same, which is to say, generally pretty well but not always. So I don't feel like I'm in better health, I feel like it's the same. And therefore, being in good health didn't serve to protect me before and I can't count on it to protect me now.
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My first mammo after all the treatment and surgery was read as normal with post-op changes!!!! so excited
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yay Martaj!! Fantastic! I hope "normal" is how all of your scans come back forever.
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Wonderful Martaj!!!!!!
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Hey, MountainMia? Do post on Washington Post as MountainMia as well? If so, I post there as Trishyla1.
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Hello friends. just checking in.
Seven years ago I finished my last chemo for my second triple negative breast cancer. First dx in 2009-had lumpectomy, ACT chemo and rads. Local recurrence in April 2013. Bilateral Mx with Diep. Carboplatin and Taxotere.I can’t come in here often as it triggers me a little. I spend as little time possible thinking about breast cancer. I have yearly breast MRIs. My diet is not as good as it should be and I drink wine but thanks be to God, still NED.
Just want you newly diagnosed to see this 7 year survivor and also know my good friend is 19 years out from triple negative. She was one of the first treated in California when the sub type was new.
Live each day one day at a time to avoid cancer stealing your joy
My prayers are with you. ❤️❤️❤️
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5and counting, it is good of you to pop back in! May you stay well!
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Martaj congrats on passing your first mammo!
MountainMia, truncal/breast lymphedema is what I have too. It may not concern them, but it can be rather painful. I've had multiple PT sessions for it, but try to control it myself now.
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Please don't think I was minimizing truncal or breast lymphedema, LuvMyVizsla. I have both as well and it sucks. What I was happy about is that it apparently doesn't put me at higher risk for cellulitis. That was weighing heavily on me. I saw what cellulitis in her leg did to my mother before she died. I'm glad I can cross that off of things to worry about.
I've had quite a lot of lymphedema massage from an amazing physical therapist as well. I haven't been able to get in for some time because of Covid19.
I've been using dry brushing, and I have to say the results have been astounding. I was turned on to it by a friend's Brazilian wife, who is a private lymph drainage masseuse. Apparently everyone gets lymph massage in Brazil. She said there are lymph massage parlors everywhere. They believe it is part of keeping your body healthy and in good working order. Smart people, those Brazilians. 😁
Hope everyone is doing well. Stay safe
Trish
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Thanks for the reminder Trish I have done brushing in the past and I am going to find my brush and start doing it again. Astounding results sounds good to me
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Here is a link to a Cleveland Clinic page about dry brushing.
https://health.clevelandclinic.org/the-truth-about-dry-brushing-and-what-it-does-for-you/
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Good info, MountainMia.
I use my dry brush to move lymph in much the same way my PT uses touch. I keep the strokes light, always working with my lymph pathways. I have a lymph drainage chart, as well as the self help information from my PT to guide me.
Trish
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Thanks, everyone, for the tip about dry brushing for lymphedema. I've never heard of it, and I'm always looking for something to help keep the LE in my arm under control. Definitely will try this!
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Thanks for that info! I have a dry brush, but would never have thought to use it for LE.
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I have heard those mini trampolines (rebounding) are good to move lymph as well.
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We arrived to our Florida Home on Friday. Very hot and humid. I have gotten so much exercise. YARD work that was neglected last year because I couldn't come down due to chemo and such. My yard is looking good
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Hey, Santabarbarian. I have a rebounder. I bought for myself last Christmas because I heard it's good exercise and that it moves lymph.
At the beginning of the lockdown, I starting really getting into it, working up to 30 minutes at a time. The I broke my ankle in June. Haven't been able to rebound or use the stationary bike I bought, or even walk much at all. Ugh. I hate 2020.
I hope I can get back into a routine soon. In the meantime, I'll stick with the dry brushing.
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Hello
Just popping in to say hello to all. I have reached my 5 year mark. I don't know if I want to dance or cry. It has changed my life so much.
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Valstim52,
Congratulations! So great that you checked in and let us share in your achievement. It always gives me so much hope when I hear that people are doing well. Thank you for checking in
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Congratulations, Valstim. What a wonderful milestone. Maybe you can just cry while you dance. This is such a crazy year, no one would think anything of it.
Stay safe.
Trish
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Valstim52, such great news!! I know we all are cheering for you. What kind of dance would you like to do? I'd love to dance with you, and I'd cry with you, too.
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Valstim!! DANCE!!! & Cry too. YAY!!
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YAY FOR YOU, Valstim52!!!
The mixed feelings make total sense to me. Whirl, twirl and weep as needed.
Lyn
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Thanks all. It is bittersweet. I'm thankful but still in a sort of shock. My dx was so terrible in the beginning and the longer I lived the better my prognosis got.
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