Calling all TNs

Dkp1994 - It is scary! This group is awesome and the best one I've ever seen. You will find great people on this site and you'll be welcomed to post. The information here is wonderful. The folks here really care about what you're going through and will give you the support you need to help you as well as her! I have the Bracca gene (BRCA 2 positive). Being that your wife is so young, she may want to highly consider being checked to see if she carries this predisposition.

By the way, I'm going on 11 years out now. I've had a couple of scares, but they were just that... no other cancer. I take lots of vitamins... especially more D3 than needed, Magnesium, K2 MK4 and MK7, etc. You want to keep your D3 levels higher than the normal population.

Ntlw12.... Breathe.... exhale... breathe again... repeat. This IS scary, regardless of whether you've gone through it before or not... it can be a crippling sense of fear. Everything you're feeling is normal. I wish that helped to know it, but I know it doesn't ... not like you'd like it to help. It is SO hard to begin with. I remember all I did was cry and read... didn't feel like sleeping or eating. I was a mess! The women here were wonderful to help bring me back down to earth. I think the waiting game is the hardest. When you're actively getting it OUT of you, it helps. Dreading what is to come and not knowing what to expect is really hard! The good news is, it sounds like you're moving at a pretty fast clip with everything and you should find out a lot tomorrow. Have your list of questions on paper. Take a small recorder with you, or use your cell phone to record (I put mine on video and use it to record). There are MANY women here who are Triple Negative, and even more out in the world who don't come here. The ones of us who have battled cancer and gone on with our lives often don't visit these sites too much. Others will continue staying to encourage those just coming on. Are they going to test you for BRCA? I would encourage that. I was 42 and tested positive for BRCA which was shocking also... no one in my family has had breast cancer. That was almost 11 years ago. It does get easier. In the meantime, try your best to relax as much as you can... try to eat and drink lots of water... get some sleep... everything is so much worse when you're exhausted. Once you have a game plan, and begin actively kicking cancer in the A$$, the anxiety will become more manageable. I also found taking Tylenol and/or Ibuprofen staggered helped take the edge off. I remember the feeling you're going through.... all too well. Hang in there... praying for you to have strength and clarity. Thinking positive WILL help... remember the brain is a very powerful tool... but it's hard when your world seems to be crumbling.

@CC4NPG You we’re so right I met my surgeon yesterday and she is phenomenal. She said she has seen many cases of women around my age with the same diagnosis that have gone on to live full lives. I meet the oncologist tomorrow, but know that I will have 6 weeks of dense chemo and then I have my next surgeon appt already scheduled in September. I will be getting a port in this Thursday, so hopefully chemo starts next week.

I am getting the genetic testing done, they did that last week when I went for my MRI and my surgeon said that will help us make decisions regarding surgery.

I’m worried about chemo but have decided that we are on the same team fighting against an ugly invader. So, although I know the side effects won’t be great, I welcome the help.

Thank you for replying and the kind words of support. As I have read so many posts on this site over the past week, I am inspired by the fierce women who have been willing to share their stories and offer their support

Ntlw12,

If you haven’t already, you may want to ask your MO about pembrolizumab (keytruda). Moth posted an article which indicates that the FDA approved pembro for neoadjuvent therapy. This was not available to me when I had neoadjuvent, but it is definitely something I would have wanted to have the option of having.

We know there is a lot of discussion on genetic testing. Has anyone done their genetic testing via "tele-genetics" (over zoom, other conference line) instead of in-person? If so, would you mind sharing your experience with us (send us a Private message)?! Thank you!

Hi TN friends. I'm hoping for some rational advice from people who know how this goes.

For most of the summer I've been experiencing some digestive issues. In late June and into July I had a lot of stomach/belly discomfort. I finally decided it was probably due to eating lots of fresh cherries. I'm sensitive to almonds, which are related to cherries, so I thought that made sense. Then I went on vacation and surprisingly, felt better on average. However, on the way home (July 20) I had an evening of "gut wrench," with diarrhea. At one point I thought I would throw up, too, but didn't. Next day was better.

Since then I've felt mostly okay until the last week or so. Now I feel incredibly bloated and heavy. I've been skipping breakfast, not particularly hungry, and still I feel like my belly is big and bloated. My stool is different with a BM. You know how you don't always think much of something when it starts, so you don't note what day it is? That's what I did with this. I finally noted that the stool was different on Wednesday this week (Aug 11.)

I figure to wait until next Friday (Aug 20) to give this a chance to get better, or not, as the case may be, before contacting the doctor.

Does that sound like a good plan? Any other thoughts on this? Sorry in advance, I know no one really wants to spend time thinking about someone else's digestive problems.

agree- my doc says for mild symptoms give it 2 weeks & if symptom doesn't resolve call

MountainMia,

My thought is either lactose intolerance or irritable bowl syndrome?

Years ago, I had a lot of bloating and discomfort, my gyn suggested 3 days without milk/dairy products and see how I felt. That showed me that it was a lactose issue, so now I use lactose free milk or take lactiad pills with regular dairy foods.

More recently, my gastro dr said I may have some IBS too, and she suggested IBGuard. It;s over the counter, and mostly peppermint oil. It;s worth a try.

Unless an urgent situation, as others have suggested, I give things 2 weeks to improve before calling drs.

I hope you feel better soon!

TNBC in the news again….

https://consumer.healthday.com/statins-use-after-diagnosis-ups-survival-in-triple-negative-breast-cancer-2654331433.html?fbclid=IwAR0Rk5kCowdnjPGOwpz4miIbMIVpSwWxk_zLBDc05uBv4krE4kTFcxlL0WM

I actually saw my PCP today about my digestion issues, as it had become too uncomfortable to wait. She had blood tests and urinalysis done -- all numbers fine, including liver function! -- and after we talked for a while, she sent me down for abdominal xray.

When I came back upstairs, she already had the images. OH! she said, I know what's wrong. Your colon is full.

She showed me the image. I don't seem to have a blockage or impaction, but my gut is full up. So step one is get empty again (yay, golightly...) and then take another look with US to see if there is anything else structural to be seen, and also check my thyroid numbers to see if my whole system has slowed down.

So that was GOOD NEWS #1 (or #2, in a way!!)

The other good news (?) is that I'm considered immune compromised, so I'll get my covid booster shot next week, too!

Hi all. This thread was recommended after I posted in another. 10yrs post diagnosis of my original diagnosis i was diagnosis with triple negative. Completely separate from my original diagnosis, has zero connection. Im floored. I expected a recurrence but not a new diagnosis and not tnc. Tumor is only 6mm so oncologist is extremely hopeful. I found both cancers with self exams. Very lucky to live in Massachusetts and have Dana Farber.

Doing my once a year pop in to make sure you remember MANY of us have survived and just don’t get on the boards any more. I used to look for that so often and it upset me not to see long term survivors. I promised myself I will check in yearly to encourage others. I was 43 when diagnosed and today I turned 55!

I had one local recurrence at 3.5 years out and in October, I will be 8 years out from the second time.

My thoughts and prayers are with all of you who have become stronger than you ever imagined you’d have to be. The first years of survivorship are anxious times. Please be kind to yourself as there really isn’t a one size fits all recovery.

I’m grateful to this forum for the information and support it provided during the hardest moments in my life.

I hope to pop in again next year and continue my streak-every day is still precious to me. Love and light to all

Surgical stitches do move, MountainMia. They can also spit out years later. I had that happen on the abdominal scar from my DIEP flap surgery. It was very weird.

Meant to post on August 29th, which was the five year anniversary of my diagnosis. Hard to believe it's been that long.

I'm still here, battered and forever changed, but still NED, as far as we know. Hope to stay that way for a very long time.

Trish

Trishyla, big congratulations on the 5 year anniversary!! That's beyond exciting, I expect!

MountainMia, I’m sure your little peppercorn is fat necrosis. I have the same thing under my port scar.