Calling all TNs
Comments
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Val, I didn't know about the arthritis risk. That's interesting and worrying. I had some osteo (one thumb, one toe) just starting before dx and so I guess I can expect a progression?
I'm sorry to hear that your hip repair was not successful. That's a shame. I hope your doctors can find another solution for you.
Also had a question about your friend's recurrence - my MO said that after 5 years she would consider me cured and if I had any cancer after that would be a new one and not a recurrence? Is that correct?0 -
Mountain Mia, I was told to do chemo regardless of anything, but rads was dependent on lumpectomy or mastectomy.
As far as testing for TN’s, I had the Ki67 test done. It’s a cellular marker for proliferation, how fast growing your tumor is. Anything over 20 is considered high. https://www.breastcancer.org/symptoms/diagnosis/rate_grade
Volleyballmom, I had the same thing, it was scar tissue. Try to relax. You can do some massage on it if it does turn out to be scar tissue, to help break it down.
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Volleyballmom, don't rule out the puppy. I got tripped up a couple of weeks before my first post-treatment mammogram by a clumsy horse that I was leading, and I happened to fall onto my left side, which of course included my left breast -- the one that had the tumor in it last year. It wasn't a bad fall at all, and I didn't think anything of it, but later I found that I not only had a bruise on my skin, but also a lovely little hematoma about the size of a robin's egg in my breast. So when I turned up for the mammogram, I had a LUMP, which I had to explain to every single person I ran into. It was embarrassing. Also inconvenient, because they made me have an ultrasound to prove it was a hematoma, and I have to go back in eight weeks to have another to prove that it's gone. Anyway, if a very minor fall can produce a hematoma, I suspect that a 20-pound puppy landing on you might be enough to do the same thing.
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LoveMyVizsla thanks for the link. I've looked at a lot of the material on the site but had missed this and some of the other pathology links. Taking a look now.
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Volleyballmom, - I bet it's scar tissue!
Val, - you've been through so much. I hope your discomfort eases, and your days of "no cancer thoughts" expand (and are contagious here
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MMia, happy to be of assistance.
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My tumour was 1.5cmand I have done 4 dose dense EC and currently still on taxol and carbo
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hey I noticed you have a similar diagnosis to myself and was wondering why you don’t have carboplatin
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Dee, are you talking to me, or to Mia? I didn’t take carboplatinbecause my immune system couldn’t handle it.
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Yep, and other than that I am TN (because I'm here,) I haven't posted about my diagnosis and currently am post-op and pre-any other treatment. Dee isn't talking to me this time.
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sorry guys I was talking to Farfalla🙈 I’m still new with all this tec
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hi Dee;
Yes, looks like same diagnosis, they called me 1B instead of 1A because of being triple negative: gives you an automatic promotion even if no nodes! The standard at Memorial Sloan Kettering, where I am, is ACT: 4 dose dense Adriamcyin/Cyclophosphamide, then 4 Dose dense Taxol. I'm 3/4 done with AC with minimal side effects. I did have a bad week last week but it was sort of my fault: I didn't hydrate enough, got my period also, and then ate the wrong stuff (hot and spicy) when I was vulnerable to developing mouth sores. That then developed! I have been able to continue to work and to go to the gym even (though i stopped running, definitely less energy and Im a bit anemic) And I definitely need more sleep and naps when I can.
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Thank you, ladies. I called my surgeon again today to see if I can get in sooner then May 9th because I knew I would of wasted the next week and half worrying instead of enjoying finally my free days after 10 months of treatment. They fit me in today.
Surgeon took an ultrasound and I have a sernoma, which she said is normal after rads. Breathing sigh of relief. Also set up port removal for June 10th. I can not say enough about how great my team of doctors are.
Thank you all on here also for always being here.
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Yay, so glad they got you in so fast! Great news.
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Volleyballmom, - so happy to read your update!!
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recurrence prevention - what are you guys doing to decrease risk of recurrence?
I was hanging my hopes up on exercise but some of the studies I read - which show quite dramatic reduction in recurrence - if you dig deep it seems that the big impact is for ER+ and thus probably related to decreasing BMI (because fat makes estrogen). So what about us hormone neg people?0 -
Moth - great question! I'm wondering if some of the positive things I've read about certain diets are similarly linked to BMI.
I think looking into melatonin is worthwhile. There have been some studies on TNBC specifically.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3552359/
https://www.sciencedaily.com/releases/2014/01/140128103117.htm
(linking to these studies is not an endorsement! Just a resource for those inclined to do further research on the web and with their medical teams.)
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LOW FAT. What I've seen (sorry I don't have links at the tips of my fingers, but I'll try to find them) says a low-fat diet is valuable for prevention for TN. The focus would be on high-quality carbs and lean protein. Lots of fruits, vegetables, whole grains, Omega-3 fatty acids, low-fat dairy.
As for me, I already eat a pretty healthy diet (as compared to the average person in the Western Hemisphere!) but I'll be shifting more toward the lower fats, more veggies and fruits, more whole grains. It won't all be easy but I believe it's the best way for me to go.
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I will always agree that a healthy diet and exercise are important. However, as a lifelong runner and vegetarian ( the healthy kind!) who has never been overweight, rarely sick and just overall in good health, I lack faith that it prevents cancer. If in the past you’ve been an unhealthy eater and didn’t exercise I would definitely do those things, but as one who always has- it’s discouraging to say the least.
Two thingsI did change was I stopped drinking alcohol and our public water.
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MountainMia - I'd love to see those links when you find them because all the ones I saw were directly related to the link between low fat & low estrogen.
I'm vegan for ethical reasons and not changing that though I can tinker with macronutrient ratios.
I exercised, ate well, didn't drink alcohol and breastfed my kids for many years. Those things all reduce the risk of breast cancer but risk reduction is clearly not the same as risk elimination. Who knows - maybe if I hadn't done all those things I would have got it younger or got an even more aggressive case.
I think there were some studies teasing out prevention of primary vs prevention of recurrencef because these are not the same thing - & iirc identified different risk factors but last I looked there weren't any super clear guidelines.0 -
kber - I finally had time this morning to check out those links and do some additional readings on melatonin and TNBC. Fascinating. I have used melatonin occasionally in the past and I'm considering adding it to my regular routine. I did note some of the studies i read were talking about very large doses compared to the 0.5-5mg that is common for jet lag or occasional sleeplessness so maybe the regular small doses won't help much but it's worth a try anyway imo.
thx kber!0 -
Hi Moth. Yes the dosages are closer to 15 - 20 mg. My personal experience - you need to ramp up slowly and be prepared to ramp down slowly if you don't tolerate it well. For me, Melatonin led to very vivid, but not unpleasant dreams. I'm at 15 mg a night right now.
You also need to time when you take it pretty carefully, especially at higher dosages. It takes about an hour to kick in, at which point, I am pretty sleepy!. However, when I was traveling internationally quite a bit and taking a prescription sleep aid for jet lag, etc, it was much more powerful than melatonin is for me.
There is some other research that suggests that if you use melatonin long term that your body reduces the amount you make naturally, which can lead to sleep and other issues, so there's that to consider as well.
I am working with my MO on the dosage, etc. He was supportive of me adding it to my routine and does monitor the side effects, etc.
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hi ladies.
My mom is about to start taxol Monday. We are doing a masectomy after treatment. I was wondering. How do follow up appts look for you ladies done with treatment?
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ucfknights - you might want to check out the ASCO survivorship care guidelines to see what your doctors should be organizing for you: https://onlinelibrary.wiley.com/doi/full/10.3322/caac.21319
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Hey there ladies, I am in the middle of Taxol going through some really dark places, and the latest is reoccurrence. Does anyone know what the statistics are for reoccurrence for TNBC? Every where I read just says it is higher within the first 5 years over other breast cancers, but I don't see how much higher. Also, did you factor the chance of reoccurrence when deciding on lumpectomy v. mastectomy? I am going to have a mastectomy on the right side, but now I am reading that TNBC is higher risk for reoccurrence in the other breast. I'm thinking maybe do a mastectomy on both sides to reduce risk? I know that it doesn't eradicate all possibilities of reoccurrence since it can still appear on chest wall, but doesn't it reduce chances since there is less breast tissue for it to form in?
Thank you for your insight.
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Hi notdefined, I have been to some dark places too, but luckily not too often. That doesn't mean it isn't scary when you're there.
I haven't done intensive research on statistics, but when I first met with my breast surgeon, she said lumpectomy on a tumor like mine (see my bio below for details) had an equivalent survival rate to mastectomy. We weren't 100% sure that I was TN at that moment because the first test for HER2 on the biopsy tissue came out equivocal. But after a FISH test, TNBC was confirmed, though I didn't know that until after surgery. So far I have not had second thoughts about the decision for lumpectomy. I would say that since everyone has a different set of circumstances, I wouldn't bet on trying to find someone with exactly your situation to model yourself after. Rather, look at how people reach their decisions, not on their results. Otherwise I think you'll just head down the rabbit hole way more than is healthy. Bottom line is that you are not a statistic!
Best of luck with the chemo and avoiding the dark places. As my wise father has always said, worrying is worthless: if what you're worrying about doesn't happen, you've wasted your time. If is does happen, worrying didn't help. So just keep going...one step at a time.
Anne
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PiperKay (Anne,) wise words. Your diagnostic description sounds much like mine, though my tumor was somewhat larger. I'm about to begin 4 rounds of TC, and will follow with radiation, again similar to yours.
How many radiation tx did you have? I'll meet with RO on Friday for the first time. Wondering what to expect. Thanks.
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Thank you for sharing PiperKay. I know you are right, and I've never been a big worrier. I'm more trying to figure out what will give me peace of mind, and after visiting dr. Google started questioning my decision. My surgery will be in August, so i have time to change what I do. I'm sitting at the dr.'s office right now for my check up, so i will probably will ask my ON as well.
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Recurrence rates on TNBC for stage 2/3 depend a lot on the result of neo-adjuvant chemo. Patients with a pCR have about a 10% rate of recurrence. Patients without pCR, more like 30%. After five years the rate of recurrence becomes extremely low. (For early stage people with surgery first I do not know those stats.)
I was told LX + Rads has same survival as MX with TNBC.
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Thank you Santabarbarian! You have been a wonderful resource on these boards, and I want you to know I really appreciate your responses.
Hope everyone is doing well!
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