Calling all TNs
Comments
-
Totally freaking out. I finished all my chemo a month ago and the tumor was no longer palpable. Went today to have the radioactive seed placed. They did an ultrasound first to see if they could see the tumor. The technologist could see a "wisp" that was so small they placed the seed using the mammogram and the titanium chip. The technologist said she has only once seen "nothing" show up but she has had lots of pcrs with a "wisp". What are your experiences? I know there isn't anything I can do and I've done all I can. And something obviously has to fill in the space where the tumor was but ... still freaking out.
0 -
Gmanmom - that actually sounds potentially encouraging? You are doing radiation next? Have you had / will you have surgery? I'm a bit behind you in my treatment schedule (5 Taxol / Carboplatin chemo sessions left) so also very interested in what people have experienced.
Keep us posted?
0 -
Gmanmom, I had a wisp on my mammogram, and a pCR. The wisp was fluid of some sort I recall?
0 -
Gmanmom, rads are to mop up anything left so to speak. It's normal to want a blank slate, but fluid and so many other unknowns are possible, like scar tissue etc.
It's normal to be worried, its the nature of this disease.
Update on me: I"ve had off and on hip/groin pain since finishing rads. Had ultrasound for a blood clot it was so severe. Pain management has helped, but the last few weeks it's been intense. Diagnosis? Severe arthritis. No growths etc, fractures. Accelerated by rads per my orthopedic dr. . I'm having the xray guided steroid injection in a couple of weeks. It's hurts when i first get up, and now if I go without any meds or anti inflammatory, then it's excruciating to get up.
I've seen where switching from acetaminophen to ibuprofen based meds helps some folks. May try after my injection. I'm considered a good candidate as my injections for bone on bone knees works at least 4 months.
Even if shot works just a few weeks, will be worth it for me. Funny I knew it was not metastasis as I had this complaint before diagnosis just not as severe. I had a broken knee cap due to an accident a few years before dx, and it's all related. Just not as intense.
At this point, exercise does not work, too much pain, supplements have helped, as do the creams and sprays. Specifically the Theraworx relief spray.
It took a while to show up after rads, but came slowly but surely with a vengeance. Sometimes the cure ..... I'll leave it open ended.
0 -
Gmanmom, rads are to mop up anything left so to speak. It's normal to want a blank slate, but fluid and so many other unknowns are possible, like scar tissue etc.
It's normal to be worried, its the nature of this disease.
Update on me: I"ve had off and on hip/groin pain since finishing rads. Had ultrasound for a blood clot it was so severe. Pain management has helped, but the last few weeks it's been intense. Diagnosis? Severe arthritis. No growths etc, fractures. Accelerated by rads per my orthopedic dr. . I'm having the xray guided steroid injection in a couple of weeks. It's hurts when i first get up, and now if I go without any meds or anti inflammatory, then it's excruciating to get up.
I've seen where switching from acetaminophen to ibuprofen based meds helps some folks. May try after my injection. I'm considered a good candidate as my injections for bone on bone knees works at least 4 months.
Even if shot works just a few weeks, will be worth it for me. Funny I knew it was not metastasis as I had this complaint before diagnosis just not as severe. I had a broken knee cap due to an accident a few years before dx, and it's all related. Just not as intense.
At this point, exercise does not work, too much pain, supplements have helped, as do the creams and sprays. Specifically the Theraworx relief spray.
It took a while to show up after rads, but came slowly but surely with a vengeance. Sometimes the cure ..... I'll leave it open ended.
0 -
I have heard that radiation can cause arthritis flare up but it has not been medically proven. I use Aleve, one each morning for my arthritis but lucky for me no radiation is recommended at this point so hopefully it won’t get worse
0 -
I'm sorry that you're hurting so badly, Valstim52. Even with a major error requiring a second surgery and causing kidney failure, I would definitely go through hip replacement surgery again because the pain relief was so dramatic. Steroid injections helped delay surgery some years. I hope your injection kicks the pain to the curb.
Lyn
0 -
Val, sorry to hear that you’re having so much pain. I hope the steroid injection gives you some relief!
0 -
I have been away, vacationing from real life this past week; just reading through posts.
It’s so encouraging to see the check-ins from those who have been 3, 5, even 7 years out. Yay! Thank you for the optimism!
For those who are just joining us, welcome! I’m happy you found your way here, there’s a huge amount of support to be found. Make sure to join a group of people who are starting treatment at the same time; this difficult experience is better with comrades.
To everyone wrapping up treatment, CONGRATULATIONS! Wooohooo!!
I just started my first day of 6 x 3-week cycles of Capecitabine (Xeloda) which is oral chemo. I’m not excited to be back in active treatment; it’s been an amazing February and March. August will mark the end of this and I can’t wait!
One day at a time friends! XO
0 -
KWilli, good luck with your Xeloda treatment. An oral medication must be much more convenient than infusions. How often do you need to go to the oncologist for monitoring?
Lyn
0 -
Good Luck to those getting to do Xeloda. It shows how the focus is on finding other options for TN. Just 4 years ago, Xeloda was only for those with stage 4. Now it's part of ongoing treatment.
Those in treatment know we are holding your hand. Reach out as much as you want. Others were there for us, and continue to be. We are all strengthened by your courage. REmember a lot of folks just lurk but your words and experiences help them as well.
Thanks for all the support with my arthritis. It's such a shame but we were all so happy I had horrible arthritis and not a recurrence. Such is a life with cancer in your history. If my steroids procedure to my hip does not work, on to therapy, which includes the pool. I'm on a ton of supplements already focused on inflammation. They say that's why I can walk at all. All that hiking and roller skating... I guess ... wore out my knees.. and hip. Plus an injury ..
Any supplement suggestions? i'll check my list and see if i already take them.
Val
0 -
Valstim I found vitamin D3 helps me a lot, not sure why.. I hope you find releif soon.
0 -
Valstim, I keep meaning to try tart cherry juice. You would need to make sure it doesn't conflict with your current medics and I would start slow to avoid digestive problems. Here's one article about it:
https://www.livestrong.com/article/506277-the-side...
Lyn
0 -
Ah I take tart cherry pills. Stopped them a while back, umm could be the issue. Same with my D3. Thanks so much you ladies for chiming in to assist!
Any other suggestions
0 -
Valstim52....HEY VAL...sorry to read about your problems. Sometimes it seems as though it never ends. You mentioned that you stopped taking D3. I read that this is THE most important supplement for BC survivors (and all women, generally). I take 5K daily. Don’t know if it’s a coincidence or not, but I have no aches or pains. I did a few years ago, but not now since i’ve been regularly taking D3. Give it a try and see if you start to feel less pain. Be well!
0 -
Hello All,
Just wanted to share that I recently found out that my estitician gal is a 27 year survivor of TNBC! She was diagnosed at age 30. Had 2 tumors in one breast. She did lumpectomy, radiation, and chemo.... Is thriving today! I love hearing stories like hers...helps when you have a bad day of the what-ifs
0 -
I am considering, (just considering mind you) if my DX comes back the same after MRI results (stage 0 DCIS, high grade triple neg), being 60 with under control diabetes, undergoing BMX with NO reconstruction. I do not have the bad genes. I'm no fool, and I know there would be vastly more complications associated with recon over going flat. I'm ok with flat, seriously. Here are my reasons if I were to decide upon this. Do these reasons sound valid? I know it sounds like over treatment, and I'm the only one who can decide, but I also know my surgeon is going to push for lumpectomy with rads. She has not referred me to an oncologist yet - only a radio-oncologist, and they haven't called yet. I see her again on the 9th. I guess I'm more worried about rads with diabetes really.
1. Triple negative, high grade. Much more chance of recurrence, and I really don't want rads.
2. Being diabetic with it under control right now, and I've already lost 20 lbs, seems like this would be the right time to nip in the bud.
3. dense breasts mean something might not get caught in time later. I'll be older, and perhaps frailer for undergoing a massive surgery.
4. I want my husband to be able to retire at 68 (he'll be 68 in Dec 2020). I know him, and if there is a good possibility that this could come back, he'll put it off even longer.
I know, anything could happen. So, am I being crazy here to even consider such a thing?
0 -
hey girls. I’ve heard TNBC usually carries the BRCA gene. Is that true? Who here carries the gene? They tested my mom for the gene— HAVENT heard back yet but she is already on AC.. no one in my family has/has breast cancer so not sure why she is getting tested. What was your protocol if you have the gene, ie: BMX? Any information will help.. i don’t want to get stuck googling stuff.
Hope everyone is doing okay!
0 -
I was tested and was negative. Given that I have a sister and a daughter, that was a real relief to me. I think with TNBC, my doctor does it almost as a matter of course as it can be a factor in treatment - especially surgery. In my case, being negative, a lumpectomy is a more viable option than if I were positive in which case I would seriously consider / probably have a double mastectomy.
0 -
I was neg too. I think the thing w BRCA is there is also a higher incidence of ovarian cancer too so they may recommend hysterectomy or oophorectomy as well.
0 -
Val, sorry about your arthritic pain. Take a look to MSM (methyl sulphonil metane) powder, or DMSO cream. Boron, magnesium, collagen, vit. C and vit. D, they all helps a lot. But MSM is the magic bullet. Good luck!
0 -
I realized that I posted in a TNBC thread and i'm not. Sorry ladies, is my chemo brain😝
0 -
I was tested for BRCA, but am negative as well. When I discussed with the geneticist and my doctor it was explained that a high percentage (I thought it was like 50%) of those with the BRCA gene and BC are Triple Negative. I knew about the TNC right away, and had to wait a week for the genetic results for BRCA.
0 -
Stitch, I was diagnosed with DCIS, high grade, hormone receptor negative (no HER2 test because DCIS), and my surgeon, (as well as my 2nd opinion surgeon), recommended mastectomy. I wanted to do as much as I could to never face this again, so I had a double mastectomy. If I should fall in the small percentage of women who have recurrence, I want to know I did everything I could. I do not regret my decision at all.
0 -
Hi. I was diagnosed 3/1/19 after a regular screening mammogram, diagnostic mammo, ultrasound, and biopsy. Met with BS and MO a few days later. TN, DCIS and IDC, grade 3, inherited genes (BRCA etc) negative, apparently 1 tumor in left. Scheduled for lumpectomy 4/18 with sentinel node biopsy to determine follow-up treatment. As much as this sucks, I have a great husband for support, world-class health care, and good insurance. I'm gonna depend A LOT on all three!
Just starting this journey. Thanks for being here to help us all along.
0 -
Cathytoo, yes my vit d3 has been remiss. I've started back taking my prescribed dose of 50,000 btu once weekly, already I feel a difference.
Yndorian, i'm glad you did post in here, as I have heard of msm and it's part of a supplement I'm taking, so i'll look into the others as well.
Thanks to all, keep those options coming...
VAl
0 -
I hope adding the cherry pills and D back into your daily routine helps, Valstim!
Lyn
0 -
SuQu31 - thanks so much for this response. From talking with someone else I did find that my doctor put a slash next to HER because they indeed don't look at that for stage 0 DCIS. So I guess I'm just double negative - meaning still not going to be able to do hormone treatments. I am leaning towards what you did too! It does make me feel better knowing I may not be in overtreatment mode. I'm a total chicken when it comes to surgery, and I want a one and done! I hope, anyway! Still thinking away here, and I'll decide after I talk to my surgeon on the 9th.
0 -
Welcome Mountain Mia— it’s a group no one wants to join but you will find all kinds of support, advice, and information here. Keep us informed of your progress.
0 -
Hi, MountainMia! You are now almost exactly where I was a year ago. I was diagnosed with TN, DCIS, and IDC, grade 3, had one tumor in left breast. Had lumpectomy in April, chemo June-August, radiation in October, now happily back to normal activity and sporting a glamorous punk hairdo. (I did cold-capping during chemo; lost some hair but saved quite a bit; now have shorter "new" hair growing in to keep the "old" hair that survived chemo company. It looks pretty good!) It sounds like you have a good support system at home; as Mncteach says, you will find great support, advice, and info here, too. Come here anytime you have questions, or just want to be among people who know exactly what you're going through.
0
