Calling all TNs
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Jrominger, As you can see from my bio, my tumor was under 1 cm at 8mm, Grade 3, with no node involvement after looking at 6 lymph nodes. Given tumor size and other considerations, I went with the lumpectomy immediately followed by 4 chemo treatments and then radiation. Radiation wouldn't be necessary with mastectomy, but was presented to me as standard procedure and not really optional with lumpectomy.
I did a lot of reading about radiation while I was going thru the surgery, recovery, and chemo. At first, I was expecting a 6 week course, but as it turned out, my radiation oncologist had been recommending a shorter course of treatment for most of her patients for some years which is now also the recommendation of the American Society for Radiation Oncology (ASTRO). These guidelines supported a shorter course for me which was 16 regular radiation treatments (radiation of the whole breast) and 4 "boosts" (beams targeted just to the area where the tumor was) for a total of 20. I started on a Wednesday and finished up on a Tuesday so the whole thing was completed over 5 weeks, 3 full weeks and 2 partial weeks going every weekday, M-F.
In my reading, I learned about proton therapy, but my medical oncologist was pretty adamant that proton therapy was not appropriate for breast cancer. Some women on this website, though, have had that type of radiation and seem happy with it.
For me the treatments were very easy. Once the radiation therapists had done all the measuring and marking (I got stickers rather than tattoos) before the first treatment, all subsequent visits were quite short. Actual time spent get "zapped" in the treatment room was probably no more than 10 minutes. Most of the rest of the time spent was getting back and forth from the hospital and waits of varying duration in the waiting room.
As for side effects, I had minimal skin damage after using great quantities of Aquaphor lotion every day. It's greasy but very protective of the skin, and I came through without any burns, only some discoloration which disappeared after a couple of weeks. Of course, there can be more damage done than to the skin, and I am experiencing some of those like aggravation of my lymphedema and occasional pain and discomfort. I'm told that internal healing after radiation can take months. And I did experience some fatigue starting in the middle of those 5 weeks or so, but certainly not debilitating. I just kind of wanted a nap in the late afternoon most days, but again, that let up within a couple of weeks after treatment ended.
With this all said, everyone has a different experience and set of side effects, but I hope this provides you with some idea of what radiation treatements are like. I'm sure other women here can offer their own experiences or you can travel over to one of the threads in the Radiation category where there are lots of discussions going on.
Best of luck to you!
Anne
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I got proton rads and was thrilled w it. I made a thread about it.
I have seen a number of women on this site with unwelcome SEs of rads... brachial plexopathy, lung fibrosis, etc. I was scared of that and had a L side cancer which would mean exposure to my heart. I like that it only targets the breast and the beams do not pass out the back of your body but stop at chest wall. Also they can focus beams on surgery spot, area of prior tumor (or residual tumor). It is very precisely targeted.
My proton center, Procure in NJ, worked w me and took on the insurance fight w a moderate copay from me. I believe TNBC is one of the ways they can argue it and win the argument. I had 28 sessions, 4 different zaps per session, about 25 mins total from arrival to departure.
Procure was very possibly the best medical experience of my life (though my skin DID react!). Nearly spa-like... very personal touch, and LOVELY people soup to nuts. A special, healing place.
A lot of people there had very gnarly cancers. You see kids there... People who are in much worse shape. It made me realize how lucky I was.
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Piperkay and santabarbarian thank you so much for your insight and input!! I guess we will know more after BMX pathology. Right now MO is hoping for no radiation since there was no node involvement but it seems like it might be a wise last treatment. We have 2 friends who had TNBC at about the same stage as us IIB. One had rad and one did not. They r out 3 and 5 yrs respectfully. I’m sure we’ll get good advice when we have more info. But thank you for yours and we’ll use it!!
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I had a lumpectomy + rads but I was given the option to do a single mastectomy. If I had done the mastectomy, I could have skipped the rads as there was no cancer in my lymph nodes. If there had been I would have needed rads anyway. The 2nd breast was never even considered for removal. My entire team said they don't remove healthy breasts. It's a big surgery and there's no need to risk additional complications when there is no survival benefit. My MO explained that localized recurrence in the breast is not really what they worry about. Given that we are so closely monitored, a localized recurrence will likely be caught very quickly anyway. The problem is metastatic spread and *that* is not prevented through bmx. You can cut them both off and still have a metastatic recurrence. I don't think I fully understood that until I did a lot of reading on this board.
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Great info Moth. Thank you. Sounds very similar to our MO. The reason for our BMX is due to BRCA2. So because of the BMX and hopefully still no cancer in the nodes we may not need the rads. Time will tell. Thank u all for the great info
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jrominger - yes, absolutely BRCA2 does change things (as do some of the other genetic markers). My genetic testing came back negative but I believe they would have recommended a bmx if I'd been positive. Best wishes to you!
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New article about the possibility of Tamoxifen for TNBC.
My team originally recommended a mastectomy for me based on my tumor sizes. When I expressed my wishes for a lumpectomy, my surgeon made it happen. Of course that meant that I had to had rads. It probably took more time to get undressed and redressed than it did for the actual therapy. I have four dottattoos, and my skin is still a bit more “tan" on that side. Nobody would probably notice, but I do.
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lovemyvizsla and moth. Thank you. Great info. Since Nat is having the BMX and if no node involvement it makes since that they wouldn’t do rads. Again thank you.
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my mom has her first MRI post chemo scheduled Monday then follow up for results Thursday. I'm so sad and stressed. Surgery the 19th w/o recon.
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ucfknights. You watch it will all turn out better than you imagined!! Praying for your mom!!!
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Hoping for a dead, shrunken tumor for your Mom, ufcknifgts!!
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Positive thoughts for your Mom and you, ucfknights.
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Curious if anyone knows their subtype of TN? I was never officially told, and I'm not sure it is something that I should find out.
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ummmmm I didn’t know there was a sub type😳. We can probably find out?
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Its very difficult to know unless you get a certain test panel that tests a bazillion things and looks for the cluster you fall into.
For example, LAR - which is Luminal Androgen Receptor-positive type TNBC, is usually low grade and slow growing. Basal-like TNBCs and are usually higher grade and have more mutations. (TNBCs in general have many mutations).
Me: High grade and fast growing, which suggests basal-like; yet AR+ (90%+) which normally indicates LAR. While my low mutational burden is atypical of all TNBCs. So go figure.
My MO treated me as 'basal like' due to my cancer's high grade and high Nottingham score. I had a good response to chemo so that might confirm his hunch. But it's weird to be so strongly AR+. They count it as highly positive at 10%+
It can be important as basal like BCs tend to respond well to carboplatin/ platinum therapies.
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notdefined, it seems to be the philosophy of my MO and clinic not to do extra testing unless that would lead to a difference in action or treatment. I don't think the subtyping is actionable at this point. At any rate, there was nothing in my pathology report about subtype of my tumor.
Here is an article from a year ago that looks at possibilities for different treatment based on subtype. Doesn't sound like they have teased it out yet.
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I didn't know either! I just met with the Radiation Oncologist and he said there are 6 subtypes of TN. I saw some subtypes in a couple of studies too, but I assumed I would have been told which one I had if it was applicable.
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santabarbarian and MountainMia thank you for the response. I was looking into some of the studies being done, and some were geared toward a specific subtype of TN. I wasn't sure if they test at that point, or if it was something in the biopsy report that I missed. I thought I read that there are 2 types of Basal TNBC.
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I have asked my MO twice about the subtype and he looks at me kinda confused. Subtypes are discussed often in articles I read. Seems like it would be good information to have.
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Likely this has been asked over and over. (I may have even asked it myself!) Does anyone have good demographic information on recurrences for tnbc? I'm wondering about diagnostic demographics, in particular, such as stage, lymph involvement, etc.
Also, more grimly, I wonder about proportion of recurrences that are metastatic.
Some people may have no interest in the stats, figuring (correctly) that knowing doesn't change anything. But some of us still want to know.
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mountain Mia, I also want to know and have been exhaustively researching on line and there’s not s ton if data for stage 1 tnbc. In a way that’s good: a lot of studies are based on tnbc being caught at later stages, and survivals stats are lumped together. I have found info that says , in stage 1, size of tumor under 1.5 cm, absence of lymphovascular invasion, and number of tils ( tumor infiltrating lymphocytes) —the higher the better—are associated with ongoing survival with lower risk of recurrent or metastatic disease. But no numbers, and my oncologist says things like “you’ll be fine” but when I press for statistics they are vague.
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It seems to depend more on response to chemo than stage at diagnosis.
Roughly 30% of TNBC patients get a pCR. I know that the recurrence rates are about 10% for people who get a pCR, and more like 40% for people who do not have pCR. Nearly all TNBC recurrences will be within the first 3 years, and after 5 years recurrences are vanishingly rare. (Of course, one can always develop a new primary.)
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I had adjuvant, not neo-adjuvant chemo. My tumor was 1.5cm, removed with clean margins and no lymph node involvement by lumpectomy. Is that equivalent to pCR?
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mountain Mia, I am the same. We can't tell if we had pcr because my tumo was removed fully before chemo and radiat. So it's good to have a smaller tumor, but since pcr is a sign of a great response, we can't know if we would have had that with a larger tumor. So while it's good it was smaller it takes away a piece of information that could have been reassuring. I don’t think it’s equivalent to pcr. There is recent work on tils that suggest that a high percentage of them in tumor ( more than 50%) is associated with a pcr. I hang on to this since my TILs were 70-80% according to pathologist.
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mountainmia. It sure sounds like cPR!!! Nat’s tumor was 2.5 cm. We did AC and finished Taxol #3 yesterday. Our MO said that currently there is no node involvement and if that is the case after BMX and the margins r clear she should be good to go with no radiation. If something in the margins we will do 6 weeks of radiation. Yours sounds VERY positive and we hope to be where you and santabarbarian are later this fall!!
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Unfortunately, if you have tumor removed prior to chemo, there is no way to know if you would have pCR.
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Farfalla, that TIL number is wonderful and indicates you would likely have/had a great response.
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santabarbarian I have a question for you. My wife, Nat and I are walking/hiking over 20 miles/week. Nat is a big work out person and this activity is so good for our spirits!! Her RBC’s are dropping of course because of chemo and we don’t want to go so low that we have to have a delay. What has your research shown about aerobic activity during chemo?? Our diet is nutrient dense, high protein and iron but we do have to be careful of too much fiber due to bizarre diverticulitis episode during AC 9 weeks ago. Thanks.
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I kept going on my workouts during chemo. I was very low RBC as well. They got hard to do wind-wise. I had to rest a lot. So I would go, take lots of rests, and have it be double the time to do the normal hike. The integrative onc I saw wanted at minimum 20 mins of interval training (30 sec @ medium intensity, 30 sec @ high intensity done 3 times; then a 3 minute sit down rest, then this sequence repeated 3 total times).
Between chemo 5 and six I did not get back to full routine but I did do 2x pilates and a 2-3 x medium intensity walk through to the end.
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Santabarbarian you rock!! Great info!! Our workouts are so important to us. Thank you for your quick response. We r following in your footsteps!!! Shooting for that cPR in October!!
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