Calling all TNs

MountainMia

Alrighty, appointment rescheduled for tomorrow morning. I'm glad I called. Thanks.

Trishyla

Good, MountainMia. Hopefully your doctor has some insight for you and you won't have to spend the weekend worrying and wondering.

Keeping my fingers crossed.

Poppy_90

I haven’t checked in for awhile, but please keep us posted Mia. I’ll be with you in spirit tomorrow.

santabarbarian

Me too!

MountainMia

Thanks, everyone. I'll let you know what I find out. I keep flipping between thinking I'm a big whiny baby, and thinking this is important and I need to address it quickly. Not sure which it will be!!

serendipity09

Sending positive thoughts your way for tomorrow's appointment!

1414

sending you positive thoughts and prayers.

Martaj

Thinking of you. Good luck

1414

Mountain Mia, Hoping you had a good appointment 🙏🏻🤞🏻

NorCal and Serendipity, Had my appointment with my Oncologist yesterday regarding Xeloda. I’m going to start on 2000mg a day and see how that goes. The goal is to stay on it for a year. Better get the moisturizer ready for my hands and feet! Since I’ve just finished chemo and radiation I keep thinking about it recurring. I don’t know if I could do this again. Does anyone know the rate of recurrence? My doctor doesn’t do scans unless there’s a reason. Have you all had the same protocol?

MountainMia

Thanks, 1414! I have diagnostic mammogram and US scheduled for this afternoon, and we'll go from there. And on the dodgy digestion, I got results back from a fructose malabsorption test this morning. Need to see a registered dietician and figure out how to eat.

As to doing scans, I think it's not standard practice to do scans without symptoms. And rate of recurrence? Too f'ing high...

Have you seen the Predict tool? Sorry if we've talked about this before. Since we triple negatives don't do Oncotype testing, we don't get stats numbers from that. You can try Predict to see large-population stats for your characteristics.

https://breast.predict.nhs.uk/tool

serendipity09

1414 - like Mia said...too high. I wish there was a different protocol. I had a recurrence less then 5 months after BMX and about 1.5 months after stopping X, but was not dx'd until 10 months because my bloodwork was good and there was no "reason" for scans, little did we know! Now I don't trust the bloodwork. I just know to advocate better for myself if something is off; in my case it was a blemish that I should've demanded they biopsy sooner. Again,I hope you tolerate the X well! I stayed off my feet as much as possible and constantly had my feet slathered in Aquafor. I tried Udderly Smooth at first, but for some reason, I don't remember why, switched.

Mia - good luck! Praying all goes well!

1414

YIKES! Just looked at the Predict webpage. Certainly don’t like those results. On a positive note, coincidentally I have 3 friends all TN, one diagnosed 9 years ago with no recurrence, another 4 no recurrence and the last 2 years. I’m hoping to join this group. As my oncologist said yesterday the landscape ofTN is changing almost daily. I’m willing, as I’m sure all of us are, to do what I need to never see this again! Keytruda and Xeloda here I come😳

serendipity09

1414 - that's awesome about your friends! Gives us hope, doesn't it?! My MO has said the same about TN and I trust her completely. My recurrence was rare, something she had never seen and a learning experience.

MountainMia

Right, 1414! It is changing, and the stats from Predict don't include those changes, because necessarily they are a look back at prior treatments. And either way, the majority of TN patients will be treated and never recur, much less die from it.

Trishyla

Another positive survivor story is the founder of my in person support group. She's a nineteen year TNBC survivor. And a couple of others in our group are ten years plus.

Trish

1414

These are the stories we need to hear more of and focus on. Going down that black hole is hard to climb out of. I’m thinking of finding a support group as well. Certainly can’t hurt being with others that get you. I also agree about being our own best advocate. If we don’t speak up who will?! It’s a beautiful day here in DC! I hope you all enjoy your weekend

MountainMia

1414 asked about the rate of recurrence for tnbc. This article from 2019 https://healthcare.utah.edu/huntsmancancerinstitut...

says "Sixty percent of patients with triple-negative breast cancer will survive more than five years without disease, but four out of ten women will have a rapid recurrence of the disease. "

So, really quite high. I know I've read this article before, so I'm not sure why I find that stat so breath-taking.

And this article from 2014 suggests it might be closer to 27% https://pubmed.ncbi.nlm.nih.gov/24558065/

And if you keep sifting through publications, you can see a pretty wide range, from about 16% to the high number of 40% with recurrence. I don't have a clue what the real number is, and while this all gives us an idea, as I said before, it's a look back on disease-free survival based on past treatments. What we get today is not necessarily the same (or it might be almost exactly the same, but the averages would still improve.)

NorCalS

With Keytruda in the mix for first line treatment, I’m hoping the survival numbers improve.

1414, 2000 mg is doable. I think after I finished my 6 months of Xeloda, a study came out that showed the lower dose for longer period of time may be better for DFS. Also, less side effects with the lower dose/longer time period protocol. The moisturizing helps and so do cotton socks if you start to have problems with your feet. I started wearing my partner’s cotton socks because his were nice and thick.

MountainMia

I had the US and mammogram for the lump in my scar. Called bi-rads 4 (suspicious but not convincing, basically). The radiologist said it looks like fat necrosis but there was something about the mammogram that made her not convinced, hence biopsy scheduled for tomorrow morning. I should get results before the end of the week. It will be stereotactic biopsy, which isn't what I had the first time. I'll admit I'm a little nervous about it, being under compression long enough to do mammographic guidance. But that was how my clip was placed after the first biopsy, so I know I've done it and can do it again. Mostly I'm just anxious about results.

I was able to keep busy most of the day yesterday and not focused on this. We went to dinner at friends' last night. They are Lebanese and we had fantastic food, and they served coffee after dinner. Neither husband nor I ever have coffee later in the day, and both of us slept badly last night! I actually barely slept at all, between the caffeine and the full belly and the bit of anxiety. Hoping to get a good nap this afternoon and sleep better tonight.

Kayce234

I'm Kristen. Im 53 and live in Massachusetts. Triple Negative diagnosis 8/24/21....Er/PR positive diagnosis 11/11/11. Past treatment was lumpectomy, radiation and tamoxifen. This time im scheduled for a Single Mastectomy and most likely chemo.

Kayce234

MountainMia....prayers for good results and sending strength and calm vibes 🙏

MountainMia

Hi Kristen. So sorry you are back. Looks like your surgery date set. You won't know for sure tumor size until the pathology comes back, of course, so you probably won't know about chemo until then.

Kayce234

MountainMia thanks - based on the size on Ultrasound I'll need chemo if it's proven correct by surgery. I'm prepared for it but hoping not to need it. My boys have already decided if I do chemo and if I loose my hair that they will shave it for me. I actually have a photographer friend who has agreed to photograph it if and when it happens. Right now I'm just trying to get all the "what if" scenarios worked out and planned for so once surgery is here I can then focus on healing.

NorCalS

Mountainmia - good luck tomorrow. Hugs.

Kayce234 - are you considering Keytruda in addition to chemo?

Kayce234

NorCalS - not right now that I know of. So far plan is if it's size on ultrasound 12wks of chemo and if bigger a more intense version. Everything is dependent on the tumor size. Hard to plan ahead

MountainMia

Yeah, chemo sucks. There is always a month-of-chemo group that you should consider joining, and of course everyone here will help any way we can.

Kayce234

MountainMia - I will definitely join when I'm sure when and if. I'm part of a Surgery Month group also. This board got me through everything the last time around. I did have an issue with a sibling finding the board which caused me to leave but am so happy to have found the strength to return for this diagnosis.

MountainMia

Ugh, siblings. Can't live with 'em, can't kill 'em. ;-) Yes, I'm glad you'll be able to get support here again.

Poppy_90

Mia: thanks for the update. I’ll be keeping you in my thoughts.

Kristen: I just wanted to reach out from one triple negative Kristen to another. I’m so sorry you’re back.

LW422

Mia--hugs to you. I hope all goes well tomorrow and I'll be waiting to hear "NEGATIVE!" Take care.