Calling all TNs
Comments
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HockeyChick - you got this!!
Good luck!
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Hockeychik, holding your hand. Welcome Michelle. I know you don't want to be here, but welcome. We will support you. If you can go to your profile and update your treatments/etc in your signature. That way those that have the same diagnosis will reach out.
My opinion on Stats: If you fall in that 20 percent or whatever it is, then for you it's 100 percent. Our dear Annie was five years out and had a recurrence. She is no longer with us. As I was told at MD Anderson, the statistics, graphs charts, are only as good as the sample group. Some are on groups as small as a 100. So you never know. It's all a guess. If they knew then no one would have bc or a recurrence. Why did they tell me this? I was trying to get them to pin down/ predict my chances. I needed to hear that I was not doing all of this for nothing. I was told repeatedly at the beginning how Rare IBC was, and that my cancer would probably not be IBC. Well.....
I swam, biked, ran, drank green tea, had an ideal weight. I've had bc 2x in my life. Not related. Its a crap shoot at best. I still drink green tea, walk a lot (can't run thanks to a rad induced stroke) dance. Why? Because I like to and it makes me feel good.
Whatever works to keep you going.
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Hello Ladies,
Thanks Valstim52 ! Reading everything you do gives me hope to go on
I'm currently 57, (54 at first cancer occurence). Living in Belgium, speaking French and Dutch.
After 2 years of all kind of treatments for skin mets, I was finally diagnosed TN. Previously (it is up till last month) I'd always been categorized HR/PR+ (although I only had a "very" partial reaction to hormone therapies.
After failure of all targetted therapies and Xeloda, I'm now on Halaven (1st cycle, second week). I'm trying to go daily for a walk, started a Keto diet last month (and still following it :-) ).
I send you all lots of love ! And hope to read you for a long long... time.
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cccmc2, as far as scans, my oncologist ordered a chest x-ray, a CT of the chest and abdominal area and an echo cardiogram since chemo can damage the heart. I'm not sure why she recommended that series of tests vs. a PET scan or why your doctor thinks scans unnecessary. Interestingly, once you complete all your treatment, you typically won't have routine scans, which surprised me. Studies purportedly show no difference in survival of those who had routine scans versus those who didn't so most insurance companies won't pay for them in the absence of symptoms. A couple of small lesions showed on my initial chest x-ray so I did have a couple of follow-up chest x-rays until there was a comfort level that the spots were not cancer metastasis. I think spots are actually quite common on one's lungs by the time one reaches her 60's. Other than that, I'll continue to have mammograms done on my cancer side breast every 6 months and both breasts once a year..
Regarding your weak hormone positive status, based on my core needle biopsy, I was originally diagnosed as ER / PR-, HER2+. I I had just gone through 6 months of hell with an undiagnosed herniated disc and inflamed sacroiliac joint issue and couldn't compel myself to follow medical advice of six months of pre-surgical chemo followed by six more months of herceptin. As it turns out, my lumpectomy solid tumor pathology report showed triple-negative cancer. One has to wonder how accurate our testing is when tests weeks apart show such divergent results. Did the biopsy just happen to choose from a small cluster of HER 2 positive cells in a sea of triple negative cells or did the solid tumor pathologist not choose the best diagnostic slides for the FISH test? When my diagnosis changed, I reluctantly agreed to chemo.
I'm sorry that you find yourself in need of this forum, but think this and one of the "Starting Chemo in X Months" groups will prove very helpful as you move through treatment and beyond. There is a wealth of knowledge as well as empathy here.
Lyn
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VLH, I’m so surprised about many insurance companies not paying for scans post treatment! It seems like catching a recurrence quickly would be huge. I’m getting ready for a ct in just over 2 weeks. My 1st scan since chemo ended in Nov. I was expecting this would be an every 6 month event for at least a few years. I’ll have to ask my MO about this when I see her that afternoon.
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The big scans are usually used to look for spread out of the breast & iIt was explained to me that there is no evidence that finding mets early improves outcomes - hence in my area, scans are not recommended unless there are clinical signs.
Also, CT and PET scans expose us to a pretty significant dose of radiation - in itself a risk factor. So the risk / benefit calculation has to be done imo. Mammograms also expose you to radiation but a much smaller dose than PET or CT. There's a chart here if you're curious https://www.radiologyinfo.org/en/info.cfm?pg=safet...MRIs don't use radiation. But their problem is that they sometimes find too many things - (false positives) which then means more tests and stress.
I'm still sort of tempted though to pay out of pocket for additional breast MRIs on top of the diagnostic mammograms which will be part of my after treatment care. This would be to quickly find any loco regional recurrence.
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Hi ladies - I managed to break one toe and severely bruise three others on my left foot playing badminton in bare feet! Two days before Home no on vacation. My teen boys had a big laugh about it - last summer cancer, this summer broken bones - I’ll take it! If you can’t laugh, you’ll cry
I just drank two cosmopolitans to numb the pain so I’m feeling good.
Have a nice weekend everyone!!
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VLH,
thank you for your response! They mean so much
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VLH:
I have been comparing my pathology reports to the newly published article (May 30, 2018) Titled:
"Human Epidermal Growth Factor Receptor 2 Testing in Breast Cancer:
American Society of Clinical Oncology/College of American Pathologists Clinical Practice Guideline Focused Update."
*******
I fall under category/question 2 within the study.
My IHC was 1+ at OSU MED CENTER AND 2+ at Cleveland Clinic. My ISH was >2 but less than 4.0.
My tumor was less than 1cm. No nodes. ER negative. Staged 1a...
I am currently being treated as HER2 positive with Taxol (received #9 today) and plan to receive a year of Herceptin.
I am concerned my treatment plan will also change.
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I can’t believe how long it’s been since I wanted to visit here. Just had my 6 year follow up with oncology in Dec, and she said to stop anticipating a recurrence! Monday had my mammogram, and they saw something 😢 (still too small to feel) Yesterday had a biopsy. It’s in the same place as first lump. Biopsy incision is actually at the end if my scar. Now I am very anxious that I’ve had a recurrence. These 3 days of waiting are sooo hard. The radiation tech mentioned something called fat necrosis, as a possibility. Anyone have experienced such a thing? Thanks for all the support this forum provides!
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oh luv! I’ve definitely read a lot of cases of fat necrosis on these threads - apparently very common. I would bet that is what it will be.
You are in my thoughts - I know the waiting can drive one crazy with fear.
Please let us know when you hear back.
Hugs.
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Yaelle and luvbngGma, I had scar tissue and some fat necrosis. The scar tissue was/is internal where my tissue removal margins are, and also along my scar. I had two surgeries with the same incision site, so it feels lumpy. My Physical Therapist used a low level laser, also known as a cold laser, to “zap” the hard scar tissue. I am not exaggerating when I say it softened immediately. If your lumps turn out to be scar tissue, consider PT and cold laser treatments. It’s painless.
VL22, pour me a drink too! It’s been. Along time since I’ve had a cosmo.
Moth, my tumor was unable to be seen on mammogram, so I’ve demanded MRI’s with my annual mammogram. My MO said insurance might not want to pay for it, but I’m going to remind her that my dense breast tissue warrants it.
I had lumpectomy and reexcision, ACT chemo and 30 rad sessions. My MO told me this brings my risk of recurrence down to 8-10%. I’m not a candidate for zometa or anything else, so that’s that.
I haven’t altered my diet much, I never did eat a lot of red meat. I do walk my high energy dog twice a day, once a day in the winter. Also use hand weights to regain muscle lost during chemo. My husband and I went to our local Relay for Life event today. I got a new survivor shirt. We listened to the speeches and our eyes teared up. We walked the survivor lap together.
I hope everyone I see having a good weekend and does something fun.
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Hello everyone,
I have just been reading through the thread and I wanted to say thank you to all of you who said congratulations on my 13 year survival as of June 20th this year.
I read all of the posts with great interest and just wanted to say that I am thinking of all of you who are going through treatment and having your ups and downs. I want to say that if I have been able to get through this, then so can you. Just keep looking forward and telling yourself that you are going to get through this.
From the beginning I ignored all the doom and gloom about breast cancer with triple negative receptors and always remained positive about being negative!
Do not worry about statistics and percentages. Eat healthily, be physically and mentally active and avoid negative stress. Live the day.
Wishing all of you the very best.
Love.
Sylvia xx
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hi everyone. Reoccurrence has been on my mind lately too. I was diagnosed 9/7/17. Dose dense AC/T and BMX 1/29. No radiation bcus my tumor responded extremely well to chemo, but I am on round 6 out of 8 for xeloda. I an eating healthy, exercising and trying to live & be thankful. When I express my worries to my oncologist, she says, yes reoccurrences do happen, but the vast majority do not reoccur. I like her positive attitude. Just sharing a positive outlook😊😊
Anne
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Hello Yaelle,
I was reading through the TNs thread and I read your post with great interest, as I have not seen a post from Belgium so far on the TNBC forum.
I was very sorry to read all that you have been through and I do hope you will have more success with eribulin (Halaven).
Reading your details I saw that you do not mention chemotherapy or radiotherapy. Did you not have any? I saw that your tumour size was 6cm+ which is the same category as mine was back in 2005 and because of the size I had six months of chemotherapy followed by a mastectomy and then three weeks of radiotherapy.
I was wondering how long you were on hormonal therapies and had only a partial response. I have read in the past that long term hormonal drugs can cause the cancer to mutate to hormonal negative.
I do love what you wrote in French and I definitely agree with it. I love the French language. I do wish you all the very best.
You are doing the right thing with a daily walk and we do hear good things about the Ketogenic diet. I am sure you will get lots of support on the thread.
Fond thoughts.
Sylvia xx
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Hello ladies,
Thank you all for your positiveness and support.
Sylvia,
I love your sentence : always remain positive about being negative :-) !!! I'm sure to use it as of now.
As far as my details are concerned, I had such a long list of therapies so far, that my signature was much longer than my texts
. Reason why I only left the diagnostic part. I had both neo-adjuvant chemo (4 Ecdd + 12 taxol dose-dense) and radiotherapy (35 sessions) with the first occurence, from april 2015 till february 2016. These were followed by 9 months Femara (hormonal therapy).Surgery for first skin mets (oct.2016) was also followed by radiotherapy + a change in hormonal therapy : Nolvadex. After 3 months we moved to Affinitor/Aromasin, which really helped ... but only for a month or two. New "explosion" of mets meant a new change : Faslodex/Ibrance ... and as it didn't help I moved to Xeloda.
Finally as none of these worked, new tests were performed ... this is how I learned I'm now part of the TN-community. I'm only in the 3d week of my first Halaven-cycle (so somewhat early to know whether it helps or not), but at least it seems that progression slowed down.
It's somewhat weird, but here in Belgium we need to go on some medication for a given period before being allowed to move to the next one. Due to this, I've been on (different) hormonal therapies for about 3 years (if we count targetted therapies too).
You cannot imagine what impact your 13 years survival have on me ! This is really boosting me ! Although I try to remain positive, I must admit that the sum of : large tumor / grade 3 / Stage 4 / TNBC ... was somewhat too much. I searched for similar cases with positive evolution ... and you appeared !
So, thank you so much to be such a good example to follow ... and I hope/pray (and know) you'll still be for many many years.
LoveMyVizsla, thanks for the tips. I surely inquire about cold laser treatments.
LuvBngGma, A4ggy, I send you all possible positive vibes.
And lots of hugs to every passenger of our cruise.
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Welcome, Yaelle. It sounds like you've been thru a lot. Best wishes to you.
Luv, I have no info to offer but wishing you positive thoughts, as well!
VL22, hope your toe is coming along! Your cosmo sounds pretty appealing!
I'm on day 3 of a wonderful beach vacation with my sons. Soaking up every minute. I did receive word that my friend with the TN relapse has mets on her spine Right after that, I was very happy to reread Silvia's positive update. It seems like every week there are entriesgoing in the good news & the bad news columns.
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Also, Moth thanks for the info on post treatment screenings.
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Help! I didget bad news. Surgeon called—biopsy results are in. malignant, TNBC AGAIN! Same breast, same basic location. Since I had a lumpectomy previously, she said mastectomy is my only option. Meeting with her on Wednesday to discuss path forward. I am scared to death. TNBC Is not supposed to recur after 6 years!!
Any suggestions on what questions I should ask? Previous treatments are kinda blurred after all this time😳
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oh luvBngGma - sorry to hear your sucky news
I think some questions are:-how big is it? What stage are they saying right now?
-does she want to do chemo first and then surgery or surgery first?
-what chemo protocol will she recommend? Should chemo protocol be different than last time?
-what will they do about testing or removing lymph nodes?
-will they likely want to do radiation?
You beat this monster once, you can beat it again. Hugs.0 -
LuvBngGma, just want to say I am so sorry to hear this. The initial treatments must be very effective since they kept the cancer away for 6 years. However, local recurrence does not decrease over time, for both TN and other types of breast cancer. There is a very good chance after mastectomy which lower the local recurrence rate, you'll be back to great health again. Be brave!
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Wait, I thought that unlike for ER+ which has steady recurrence for 20+ years, recurrence for TN DID go down over time?
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Joyce so sorry to hear your news. Recurrence is always terrible but thank god yours is a local one. No doubt it was found early and you will beat it.
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According to what I know, TN is more vulnerable of distant reoccurrence in the first 5 years than other types, then it goes down dramatically. For local reoccurrence, TN has the same statistics as the others for the first 5 years and beyond. Surgeons routinely suggest lumpectomy to TN patients since we do not have higher/lower risks than other bc patients in terms of local reoccr.
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Luv - grrrrrrr! This f^%%king disease!! You are in my thoughts - I’m sure you are afraid, angry and just so disgusted. But as others have said, you beat it once. You’ll find the fight to go another round - but so so unfair .
I’m in your pocket
Hugs.
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luvBngGma, I'm so very sorry to hear of your diagnosis. To have the blasted cancer rear its ugly head again is so unfair.
Lyn
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Cccmc2, none of us wants to be a member of this club, but we're here to support each other. ☺️
VL22, are you taping your toe? I didn't realize my toe was broken until I went to the doctor six weeks after a painful late night encounter with a dog crate. The toe healed curled up and finding comfortable shoes is a nightmare.
Jcoll, if I recall correctly, my core needle biopsy IHC test result was equivocal (not definitive) so the FISH was done and showed HER2+. Since the biopsy & solid tumor pathology results differed, my oncologist ordered a Foundation genomic test of the solid tumor. It confirmed the HER2- status.
Lyn
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Dear LuvBngGma,
I know how reoccurrence can be stressfull. Even if hard for now, try to remain positive, I'm pretty sure a positive mindset is half of the battle.
I'm sending you lots of love and prayers.
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Hello there folks,
I'm posting on this thread, even though technically I'm not TNBC. However, according to my MO, my cancer believes otherwise. I was diagnosed with recurrence in January and have liver, lung and peritoneal mets. The peritoneal part was just recently discovered. I started on Gemzar/Carbo chemo and that didn't work. Then, Ibrance/Letrozole with no luck. Now, I'm being put on Haloven starting next week. I think it's mainly used for TNBC patients, so I figured this was the place to get info. Any suggestions or words of warning before I begin this new course of treatment? Thanks for any insight you can give.
Missy
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Missy,
So sorry to hear about your recurrence. I think some people on the Triple Negative Stage IV thread are done Halaven. You may want to ask there if you don't a good response here.
Hugs,
Rebekah
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