Calling all TNs
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Congrats Santabarbarian! Thank you for being such a great source of knowledge for all of us TN! You have been so helpful to me during my dx and treatments!!
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Hello to all. I have not been on in ages but thought I would let you all know there is life after TNBC. December 26 of this year will be 10 years. 🤞 I had to stop Chemo as it almost did me in. No radiation at all. Just try & eat balanced diet & watch sweets. Take supplements of B12 & D3 primarily. Still have wine or mixed drink now & then. Covid was hard as my yoga class closed. I’ll be 76 in October. Still ticking. Weight in good area. Take care & prayers to all of you. 💪
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Fantastic news, lookingforward66!! Thank you for sharing, and here's to at least 10 more!
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Great update lookingforward66! Here's to many more happy and healthy decades to post about!
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Hey everyone,
I'm TN IDC Stage 2 diagnosed back in 8/2017 at the age of 28, Chemo, Lumpectomy, Radiation.
Can ya'll talk to me about your experience of Fat necrosis? I want it all. Good bad ugly, info, experience etc.
I am 4 years out from finishing treatment and i just now 6 months ago was told a lump i found was fat necrosis. In the six months (my next checkup is next week) since i feel like it has gotten slightly larger. And as you can imagine that has my brain going crazy. Any info is great. I don't want sugar coated. Just the truth. I guess my worst fear of course is it was mislabeled and its actually a recurrence.
sending love Ashley
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turbokitten, sorry no one has replied to you. I only have minor experience with fat necrosis. I have a small lump under my port scar, of all places.
I came here to post this information.
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Turbokitten - there seems to be more activity on the thread you started.
I have no information for you regarding fat necrosis, but I hope someone can share their experience with you.
It's difficult to not become alarmed with any lump/bump. Hopefully they'll get this resolved for you and it will just fat necrosis.
Are you scheduled to see someone for this?
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Turbo,
I've had fat necrosis and it is very common! It can be identified on a sono, - did you have one? Yes, it can change in size.
Have you had your recheck yet? Let us know how it went!
Hugs from NYC
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turbokitten, I don't have a personal experience with fat necrosis but I just wanted to give you a virtual hug. We all know and understand how our thoughts sometimes run wild. I hope your follow-up went well, sending good vibes.
Hi to all the tnbc sisters, sometimes it feels little lonely in the tnbc world. Sending hugs and good vibes to all!
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I was one year out of stage 3 TNBC, chemo, partial mastectomy, whole breast radiation, trial drug. Found supicious area on MRI, had biopsy of it. Fat Necrosis. Thank god. i am now 3 years out doing okay
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Turbokitten, let us know if everything is ok and whether anything was done with fat necrosis.
Martaj, it looks like I was diagnosed one month before you (stage IIIC). So good to hear that you’re doing ok. I’m ok too. Still crossing my fingers, but feeling a little less anxious since passing the 3 year mark since DX
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Hi folks,
FAT NECROSIS:My short story for this is,
- try a 3-d mammogram. It, in my personal case, was able to differentiate between tumor and fat necrosis with no need for a follow-up ultra sound.
- Bicep Curls: I found that doing bicep curls, 100 reps with two little 5 pound weights as close to daily as I can, helped and continues to help the swelling due to lymphedema which absolutely exacerbated my fat necrosis pain. So two birds and I'm stronger so that's three, and in the end the bicep curls end up being like 10 birds, one stone (tofu birds, I would never hurt a bird).
My long story for this is:
Fat necrosis! First I vote we give it another name. It sounds like it's cadaver fat, which it wasn't, it was my very own belly fat, sucked out and then injected into the large dent in my right breast that was left after my 3.9 cm tumor was removed with clean margins in March of 2019! I chose a FAT GRAFT for my reconstruct, mostly because I didn't have time to recover from the flap. I was a full-time student and educator and I still am. I also chose the FAT GRAFT because my plastic surgeon thought I was a good candidate I guess, and wanted to get something done before radiation, as they planned to shrivel me up like a raisin, which they did and he didn't want to have to deal with the reduced quality of my skin after that. He said it's better to get the whole thing wrapped up and done, and not have primary surgeries and primary treatments continue for years. Surveillance yes! But primary reconstruct he thought was best tied up nicely with a bow and done after surgery and after chemo but before radiation. In my case he was right and I appreciate his wisdom. But man that fat necrosis hurts! And there is nothing they can do about it. Yet! My two tips above did improve the quality of MY life, but I had to learn that they worked for fat necrosis on my own.
So, you came to the right place! My entire first couple of years was non stop fat necrosis! Huge pockets of hard fat, causing pain (mostly for me, sometimes for the oncology receptionist) and consternation (honestly mostly for my doctor, and the radiologists, I was ok that my breast was getting all the extra scans at that time). Maybe it did start at like a year out. I'm trying to remember. Yes that sounds about right. Early COVID lockdown. I still get the necrosis sometimes, but very little. It is MUCH less frequent, covers less area, is less painful, and shorter in duration. For example last week I felt this pinching and I was like what is that, is my cancer back? Then I remembered the feeling, fat necrosis. It had been a year or more since I'd felt that pinching burning pain, and It was gone about 2 minutes later.
I may be a special case in how much fat necrosis I had because I had a HUGE fat graft for my dent repair! The doc said about 500 needle injections in the breast. But hey it worked, so ya know, hallelujah.
Main problem for the docs is they are hard lumps and they are concerning. They feel not unlike tumors, to the expert hands of a breast surgeon. Enough so that a mammogram MUST be ordered if there is any change. Which there absolutely always is with fat necrosis. They can feel them and they show up on mammograms. So you get more mammograms and every mammogram needs an ultra-sound follow up. Sound about right? They hurt too. Like a lot. Nothing like having necrotic fat squeezed in a mammogram every 3 months. Ah those were the days! Today, my breast is still numb in the surgery area, but its soft and squishy to the touch, thats what the doctor says anyway and the doctor is the only one who touches my surgery site. I don't even let nurses near it. I'm not getting poked and prodded to have them then say the doctor needs to take a look. I already know my doctor needs to take a look.
Anyway, since I started getting 3-d mammograms, I get to have them only once a year AND, the 3-d mammograms are newer and nicer, and as a result faster and less painful than a regular mammogram. And a mammogram followed by an ultrasound can take hours! 3-d mammograms alleviated the need for the follow up ultrasound in the case of my Fat Necrosis.
I try to look on the bright side, in general. So here goes. As a result of my FAT GRAFT choice for reconstruct,
- I got more diagnostic-quality surveillance screenings during my peak relapse period, even if they were worrisome, time-consuming and painful.
- And now I am upgraded to a 3-d mammogram forever, because its cheaper for them than the all day things with the mammogram and the ultra sound, and the surgeons hands.
- Another positive, even though the fat necrosis was painful, and still is but rarely these days, I did not need to "recover" from the flap surgery, I was a student and didn't have the time, and I don't have to worry about a flap needing to be redone 10 years down the road as my friend had happen to her, because its just some fat that gets better and better as time passes, not worse.
So yes, the fat graft might have been an unorthodox and therefore some may say a 'foolish" choice, and perhaps not worth the pain, but, the pain of fat necrosis did not last forever. I'm in virtually no pain these days.
And could we come up with a new name please! I feel this should be in a fat necrosis section. But who wants a section called fat necrosis?
Happy holidays everyone!
-Frack out
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Had my annual mammo(came back normal…rolling my eyes), but my MRI showed new areas of enhancement on the non-cancer breast. Great. Biopsies on the 14th, wish me luck. I alternate between freaking out inside, to thinking if they are malignant, they should be early stage.
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Hi ladies.
I haven't read the whole thread ( Holy cow!) but I'm new to this site and searching for others with the same experience.
I was dx at age 44 with stage IIA. Both DCIS and IDC in my left breast. I underwent 4 AC and 8 ( of 12) Taxol. I couldn't tolerate the full dose due to severe neuropathy and WBC dropping to zero. I followed chemo with a bilateral mastectomy and immediate DIEP.
Breast cancer wise I've been ok for 5 years. ( I've had a TON of other health issues, biggest being dx recently with Fahr's Syndrome - aka Parkinson's and Alzheimer's wrapped up together). It sucks.
Lately I've been having severe itching in my left armpit. It started about 3 months ago and had gotten progressively worse. There's no rash. I had an ultrasound done to check my lymph nodes and then a second ultrasound and nothing was found. My surgical oncologist and medical oncologist are still concerned so they're sending me for a chest CT and bone scan ( when my insurance approves it..)
So, needless to say, my anxiety is up there.
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lovemyvizsla Yes I understand the wavering between I'm sure it's fine and oh no should I be worried. Sorry that you even have to deal with this again! Sending you positive vibes and hope for benign results. Hugs.
debee, Glad the breast cancer has been quiet the past five years but sorry you wound up with other health issues. Boy sometimes life just isn't fair! Armpit itching sounds annoying but glad so far so good on the imaging. We all totally get the anxiety that all this brings. Sending best wishes and positivity your way for a negative CT too. Hugs.
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Hi, all.
Stage 3 Triple Negative here. I have been on 5 infusions following KEYNOTE-522. (Taxol/Carbo/Keytruda). About how long until I should feel a change in the tumor? For those who felt changes in tumor size, how long did it take? Thank you
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Hey TN sisters,
I am sorry for those facing weird itches or enhancements, and those still receiving treatment. It's a scary feeling-- we all know how scary. Wishing you all the best, and sending hugs.
My news is good. I am 4.5 years out-- about to get next my checkup in Jan. All is well. My only 'aftereffects' have been very mild lymphedema (changed texture in skin & some pinkish 'welts' briefly appear once in a while on my side boob area (the most radiated part), and intermittent odd mild pains in my breast (nerve) but that's it.
While in treatment a very dear friend battling stage 4 lung cancer told me "Keep your mind on your purpose for being alive." I thought about my purpose and realized it was "to be able to be a grandmother"
This year in January, my daughter gave birth to twins! Two perfect girls, full term and healthy. Being as this was my "purpose" -- I did not hesitate!! I have spent about half of the babies' lives in NYC (3 different stints) helping my daughter out. I got lucky and swapped my CA house for an NY apartment for the long stint (in winter, not a hard trade!). I went through some rainiy day money to do it but it was SO MUCH FUN. It was incredible to be w my daughter day in and day out for all those months. I realized we had last been that 'together,' 18 years ago, when she was 18-- and I was the PITA insisting on SAT study/ designated driver etc. Half her lifetime ago! It was a fabulous "reset" to come in as a helper, and let HER make all the decisions, and be a hero just having the joy of babies snoozing on my chest. The best part: watching my D be an incredible Mom. I'm about to meet up w them for Xmas which will be amazing-- all three of my kids, their partners and my D's inlaws.
Keep your mind on your purpose -- and hang in there. I wish you all a beautiful holiday and an even better new year.
much love, SB
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Santabarbarian So happy to hear you are enjoying your daughter again and grandbabies that sounds amazing! I am also happy to hear you are almost at your 5 year mark! I love that you found your purpose for being alive. Gives me something to think about. Thanks for posting.
I wish you much happiness in the new year! Hugs
Cookie
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Thanks cookie!
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Santabarb! So happy to read your post! Wonderful, wonderful!! Congrats and all best wishes!!
To all here, especially those of you with new and perturbing symptoms, I understand completely and send BE WELL vibes. Our bodies have been through the mill. That, in addition to normal aging changes, is enough to make us nuts.
Think GOOD thoughts, and make today the best it can be!
Raising a glass here (ok, actually a cup of coffee
. to a happy and HEALTHY 2023 for you, and yours!Hugs from NYC!
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Thanks NYgirl! I'm with you on the coffee not much alcohol flowing these days but I looove coffee! Agree sometimes I wonder how I'm still standing, lol with all the crap I have had done. Raising a cup of coffee to all our tnbc sisters may we all have a healing 2023.
Hugs to all!
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Santabarbarian - congrats on hitting 4.5 years! I'm glad you're enjoying yourtime with your daughter and grandchild.
Wishing everyone a better 2023
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Hi friends. It's been many months since I've stopped by. I just spent 10 minutes skimming through here and am glad to recognize some names, especially those able to announce good health. To those who are newer, it's scary stuff, no doubt, and I'm sorry you're going through it. Even the "after treatment" time is really hard, esp for those of us who have higher risk of recurrence. So if you're afraid, you're in good company. It's okay. Just keep moving through the process. Lean on people here when you need some support. And if this isn't enough, that's where pro help comes in, in the form of anti-anxiety meds and/or some talk therapy. No shame in either. They exist because people need them.
As for me, 2022 was a healthy and decent year for me. Health anxiety is still real, so when I had some unexplained bruising in the middle of the year (and some other weird bruising and blood issues) it threw me some, and is still in mind. But no evidence of anything seriously wrong, and I'm goin' with that for now.
At the end of this month and early next month I have regular annual exam, mammo, and follow-up with my oncology NP. I'm nearly 4 years since diagnosis; 4 years in April since treatment began with surgery, and chemo and radiation following. It's still not quite long enough to feel reassured, but it's getting there.
These days I spend about 5 hours a week at the gym, 2 of them with a trainer working mostly on strength/resistance training. I LOVE weight lifting. But a short story: the first time I tried squatting with a barbell (45 pounds just by itself), my knees buckled a little and I couldn't stand from my squat. The trainer was spotting for me and helped with the bar, of course. I got a little teary and she wondered why I was upset. I couldn't articulate it right then, but it was upsetting to feel so weak and helpless. It reminded me of my knees buckling during chemo, when I didn't have enough strength to hold myself upright sometimes, and not enough energy to get all the way down the block and back during a walk. Since that first time trying to squat 3 months ago, I've made really good gains and feel pretty sturdy.
Anyway, thanks as always to everyone who hangs out here or just stops by now and then. BCO and this group especially were so helpful to me as I went through treatment and so much of the aftermath. Bless you all, and happy new year!
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Hi mountainmia it's so nice to see you here! Happy to hear you are doing well and almost to your four year mark, fabulous! Sounds like you are happy and focusing on you and your best health. Glad you found a passion for weight lifting , isn't it funny how things happen in our lives which stir up emotions. I see it as you are thriving and are stronger than cancer!
Best wishes and good vibes for negative studies. Happiest of New Year's to you, may it be filled with much happiness.
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Love seeing you also, norcal and MM and NYCgirl. Yay for being here!!
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Had my biopsies and got the results. The larger area is normal hyperplasia. The small mass is atypical ductal hyperplasia. Ugh. I have a consult with my surgeon on the 23rd. ADH is 4-5 times more likely to become malignant and is also called pre-malignant. Yes, I googled. Anyway, I’m resigned to surgery, but bummed that it’s in the 12:00 position. I’m going to ask if she can go in through the side so I don’t have to look at the scar every day.
Happy New Year everyone
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Oh crap, lovemyvizsla. That stinks. Sure, there are silver linings, right? But it stinks anyway.
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Sorry lovemyvizla, definitely a bummer! Yes, agree mountainmia the silver lining is that it was seen before and if it becomes malignant. We all know early detection is the key! Would we have rather had just plain old negative, of course. But if we are trying to find the silver lining it is ADH and not malignancy.
lovemyvizla I also feel like these surgeons are so skilled that they will find the easiest and most cosmetic way to tackle this. Sending positive vibes for you on the 23rd and big hugs.
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thanks, friends
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