Calling all TNs

My grade was high too, either 3, or Nottingham 8 too. Trying to learn lingo. Surgeon checked with pathologist because I asked about percentage of lymphocytes. Apparently ( this is all googling, so...) there is a correlation between an immune activated subtype of TNBC and v good prognosis, at least this is what I seem to find, and pathology said this Amt of TIL cells is unusual

Hi!!

Really nice to login after long and see old faces/ names in here! Anyone finds me familiar too?

Love to all..

Always make me happy to see fellow TN’s doing well several years after treatment!

inspiring to have you stop in!!

I was told it can happen as a delayed reaction, but it might also be spurred by the rads. Is you breast inflamed or swollen? Mine is (24/28) and my nerves are acting up but more in upper arm/breast. Mine is not intense but more like the post-surgery zingers. I would call your RO and mention it.

2 more, including today. Will be so happy to let myself heal, FINALLY! A 9 month marathon, but the finish line is tomorrow!

Santabarbarian,

Congrats on finishing treatment tomorrow. I have seen you on many boards, and you've gone through this with an amazing amount of knowledge and proactive grace. Wishing you peace and healing.

Vickki

Hello all,

I haven't been on in quite some time. Thought maybe the group might need a shot of testosterone? Proud to announce that my wife is coming up quickly on 6 years since Dx on April 8th and she's doing GREAT. Newbies there IS hope and you WILL be fine! Wishing you all a great day!

Mike

notdefined, there are a few observational proton trials happening, so you may want to check whether or not you can get one of those, if Protons interest you. I know my center worked w my insurance and gave me a break... some do...!

Just diagnosed with triple neg, stage 0 DCIS - so far - from a biopsy.  Terrified, but hopeful.  My MRI was yesterday, and I did get DNA blood tests done.  3 weeks the results of that should be in and I'll have an appointment with the Dr to decide on treatment.  Last year they found a small round particle that they were not worried about, but required 6 month mammogram follow up.  In September, everything was the same.  Thank God that they wanted to do one more 6 month follow up before it went back to one year.  So this time they found that the original speck had not changed, but found this DCIS that had not been there 6 months ago.  That is what is scary.  It's obviously pretty aggressive if it wasn't there 6 months ago and now it is.  

The pathology report mentions "high grade" which is also scary.  I'm adopted is why they are doing the DNA testing.  

I've read some of the thread here, not all, and plan to use these 3 weeks to exercise, start taking vitamin D and eating even better than I have been over the last year.  I'm currently Type II diabetic, and last year decided I didn't want to be on expensive meds (Januvia) anymore.  So I started a ketogenic eating plan.  This has allowed me to shed 20 lbs, and has stabilized my blood sugars.  I went from an A1C of 11 to 7, to 5.9.  I am 60 years young.  

I guess I'm most terrified of the chemo effects, being there is no telling what I've put my body through already being diabetic.  I go to the internist regularly, and I've never had bad blood tests for kidney or liver function.  My chest xray came back clear.  

These posts have helped, because yes, I stupidly googled TNBC and the first thing I saw was "aggressive" and that I'd die in 5 years!!  

Mary, aka Stitch

Mary,

Sorry you are here-- but it's good that you found your people!

And bravo for getting so informed so fast, and for already being attentive to your eating. One of the MOs I talked to was very in favor of a keto diet for TNBC. (Not all MOs are the same on this.) I have done a largely whole foods, vegetarian/pescatarian version of keto with low animal fat, as low animal fat tends to correlate with low recurrence too.

The good news about TNBC is you CAN actually defeat it. It can recur quickly or it can just die from the treatment. It is worth doing absolutely everything you can do to improve your chance of killing it off right now. Aggressive = a shark that never stops swimming, so it can't outsmart chemo and hide from it as easily. The pokey slow cancers are the ones that hide and lurk for decades.

Chemo was no fun but not beyond my abilities to handle. I was terrified of chemo and it was actually ok.

You are in good shape, you have caught this early and you stand an excellent chance of getting rid of this for good!!

wishing you all the best,

SB

Hi Mary,

My aunt has TNC and diabetes as well.  She just finished her chemo, and is going for surgery tomorrow.  I just wanted you to know that chemo is doable, and perception of it is a lot worse then going through it.  Glad it was caught early, and wanted to send hugs your way.  The beginning and waiting for results is really hard.  Once you get your plan, you will hopefully feel less scared.

Mike, thanks for the update. Cheers to your wife on 6 years past diagnosis!

Santabarbarian- congratulations on finishing treatment! Sounds like you had a great experience radiation. I also bonded with my staff and one person in particular. I just sent her a card to celebrate being 1 year out from rads and to thank her again for being so helpful. One thing that I personally take away from this whole experience is to really thank the people who made my journey better. Conversely, I also became much more vocal in dealing with those who didn’t:)

Welcome to the thread, Mary. Sounds like you have a good handle on things. Don’t hesitate to post if you have any questions or you’re just having a bad day.

volleyballmom, the Rad. Oncologist should be writing u a prescription for silvadine cream, and they have a burn foam/pad u can place over ur rads burn to heap heal. The foam/pad(Mepilex) is sticky enuff to stay put but doesnt stick to the skin irritating it further. Just remember u still meed to allow air to the skin to heal when possible.

Hope that helps...

Thank you urdrago71. I will ask him in the morning. I felt like I breezed through 16 weeks of chemo and healed quickly from surgery. Thought rads would be long but a breeze compared.to chemo. Boy was I wrong. I find it worse, unless by body is just tired and beaten up. I am exhausted all the time, the neuropathy I was so glad I never got came a month after chemo and my arm and neck are killing me from the position I lay to do rads. Sorry so frustrated I needed to vent. 3 more weeks.