Calling all TNs

Batesburg, I think that sounds about right. 3 years is the highest risk and it drops dramatically after that. 5 years is back to normal population. I saw a chart somewhere once but haven't been able to refind it.

Sylvia, you are an inspiration. Thank you for giving us all hope.

Rebekah

Batesburg - I believe that that stat is for stages 1-3, correct? It was a huge study.

I asked her my own question months ago - stage 1b, lumpectomy, chemo and rads and my onc said I had an 80+ % chance of no recurrence- do you concur? She replied “yes”. I guess we just have to accept that obsessing and worrying about it won’t change a darn thing. Easier said than done, but I just really try not to let to affect my day to day. I’m doing a much better job. Some mornings cancer isn’t my first thought. This , my friends, is progress! But, of course, some days and I i can think of nausea I thing else !

Sylvia - I love reading your posts

Hockey Chick, I read it as 78% had no recurrence. Of the 22%that did, it happened in the first three years after treatment or date of diagnosis, however you want to start the clock.

Hello, I am 66 years old. I was diagnosed stage 2 b breastk cancer in July 2018. Treated witjh a touch TCHP regimen starting Sept 2017. Becamse toxic so only got five doses. Had lumpectomy February 6 and was NED and Complete Pathologic response at that time. I had 30 radiation to breast. March 12- April 25. On Herceptin every three weeks.

While doing a breast Self Exam, i felt what seemed to be a rather large lamp, almost right where the cancer was. I have notified NYOH (New YOrk Oncology Hematolgy and will call them toomorrow to have a look. It is HER 2 positive and i guess quite aggressive. Truly the breast cancer is unlikely to return with all these mechanicists in play, Surgery, NED Chemo, Radiations, Herceptin? I am a patient of New York Oncology Hematology. A sister has breast cancer and an older sister is 3 b Colon Cancer DX one month ago.

Id so greatly appreciate your thoutghts suggestions and feedback.

Michela RIccio

Moth and LoveMyVizsla - that makes much more sense.

Off to the hospital for my first dose of DDAC this morning,

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.

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

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.

VLH,

thank you for your response! They mean so much

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!

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.

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

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.

Also, Moth thanks for the info on post treatment screenings.

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.