Calling all TNs

6month follow up with MO, 3 month RO yesterday. All blood work great, everything looking good. I’m having some facial/head tingling numbness which I was extremely panicked about, but I’m on tamoxifen and this can be a SE - I also have seasonal allergies and probably anxiety - all of whic can be contributing factors. So much fun.

As I was driving up to the cancer center I screamed at the top of my lungs “I hate f**king cancer!” - it was spontaneous but I felt better. Just going to that building changes me - it’s like I shut down. I don’t want to make small talk or here I look good - then I feel guilty!

This stuff really messeswith you!! Rebekah mentioned it being like PTSD. I would never want to minimize it or the people who truly suffer from it, but sometimes I think we do have some of the symptoms.

Love to all - keep strong.

Speaking of PTSD, my PCP prescribed me Lexapro and I think it's helping, but it's only been a week. Just an fyi, it's worth getting something if you are having lots of random crying jags like I was. :-)

R

rdeesides - I AM someone on Lexapro, and I have been for probably a decade. It makes - ok, before diagnosis - it made life normal again for me. I hope it is helpful for you without side effects. Give it time, and I wish you the best.

Paula

Hi All, I'm more of a lurker, but wanted to post that I just passed the 5 yr mark from my TN diagnosis. There were a few false alarms along the way, mostly because I'm a worrier by nature, but my oncologist was great about ordering scans to ease my mind. I'm 61 now, and I keep exercising and eating well - most of the time. Best wishes to everyone.

VLH, oh wow, that's horrible that your lymphedema got so bad! I've got none right now. I didn't realize that you can get lymphedema even without targetting the axilla. Yikes. I have access to most journals through an academic library ..I just vacillate between researching things myself and then shutting everything down and saying "you know what, you're the doctor, you went to school for forever to become an oncologist. Tell me what you think."

elindy - thanks for checking in!!!! I love hearing from people on the other side of treatment! 5 years - YAY!!!!!!

hollywood - stupid strep! Glad everything is sorted & you're on the mend. The hair thing really affects all of us differently. It has not bothered me at all to lose my hair or be bald. And already, halfway through taxol, my hair is starting to grow back. Definitely looks like a kiwi right now. I might end up shaving it again until all the growth is more even. I do miss my eyebrows and eyelashes just because sweat & sunscreen run into my eyes. I need headbands and bandanas when I work out. Be gentle and patient with yourself. It will be ok.

oh & my one chemo tip is to bring headphones & audiobooks or podcasts or music - I really didn't want my dh or anyone else talking to me LOL. Love him dearly but conversation was just not what I need during treatments. I like that he's there but I don't want to talk. At my center we have good wifi & I can stream netflix on my ipad during treatments...

Hello to everyone.

I lurk more than I post, but here goes. Please don't take anything I've typed personally or negatively. Just voicing my experience. Hoping it will help. When first dx'd, some of the 'oldies' on the thread, gave me some great advice. Our dear Annie, our brave Div and others. My dear Cathytoo Sylvia, Meadow and Titan who started this thread. So many others. Hello to all.

VLH i can relate to how you feel looking back on treatment. I now have lymphedema. It is controlled with weekly therapy, and a Flexitouch machine. It's a targeted massage, programmed to your problem areas. My radiologist as well as MO were diligent about early detection. They sent me to the lymphedema clinic BEFORE i had symptoms. Measurements were taken. It is standard at our cancer center. So I feel you on looking back and maybe going with a different road. Or coming to the same decision but after more digging and searching.

I only share my personal view and experience to share, not knock anyone's view or opinion or approach.

In my support group of various stages and types of bc, we have a couple of ladies with severe lympehdema who had no rads, and only had sentinel node dissections. One with rads, and only a few lymph nodes taken, they were negative for cancer, so no rads to lymphs, but she has stage 3 lympehdema. Then you have me, with numerous nodes taken, 33 radiation treatments, 4 bolus, and definite lymph rads. I have low level lympehdema in my arm. So you never know how your body will react. Some don't have lymphedema. I truly did not think about it until 2 years after dx, because my hand was swollen, and then my arm. Our bodies have their own way to deal with this onslaught of poison, rads, meds and cancer.

I had BC on my other breast 28 years ago. I had a lumpectomy, rads,(10) and tamoxifen. At the time there was not a lot of talk of what your positive or negative receptors were. Based on what I had at the time, I was comfortable (sure, insert word) with my treatment at a major university hospital. . Until, a few years later. I looked back, read everything that came out about BC, and second guessed myself into some serious anxiety. As time passed, my anxiety got better, then articles started coming out about recurrence. What? . In early 92 when I first had BC, you worried about them 'getting' it all with surgery. Because the biggest problem back then, was dying soon. If they 'got it all' then you were in the clear. Or so we thought.

Looking all the way back? I would have had a double mastectomy at 31. But then I probably would have gotten it in my chest muscle or some obscure place. I have a very close friend who had a double mastectomy, no rads or chemo, just tamoxifen for 5 years. She just recurred. After the 5 year mark. Now they are prescribing tamoxifen for 10 years. Sheesh. I can't keep up!!

I can't look in that rear view mirror, because that rest area has been passed.

So my most current dx in 2015, with idc and ibc, I flew to MD Anderson, for a 2nd opinion, then to Mayo for a 3rd. They both based on all my tests, scans, etc, (this was financially back breaking, but i had help) my center in NC was spot on with the recommended treatment. So in my case I made my decision based on my research. Met with Naturepaths, herbalists, etc. Do I look back, and wish some things were different? Ofcourse. I constantly ask my therapist (psychologist) will this new anxiety get better?

In my opinion , you have to do all the research that you feel is right, consult, 2nd and 3rd opinions, etc, but at the end of the day, you have to be somewhat comfortable with your decisions about treatment. I don't think we are ever comfortable or for lack of a better word than comfortable on-board, or sure, , but it's the only word that comes to my fingers . As daunting as that sounds, its what matters in your long run In this horrid, life altering time in our lives, can we ever be sure? Plus there is so much information out there!!!. Dr Google is awful, TV personalities that have bc, look wonderful, have reconstruction, major surgeries and then look as if nothing has happened. An entirely different discussion.

. I had an experienced ultrasound tech share something. She was a triple bc survivor. she said: Take whatever advice you are given, use what works, but file away the rest, you never know when you may need it or use it. I asked her the stages, time frames etc, she said something I'll always remember: Does it matter? I've had it, had treatment, and am trying to live as normally as possible. My new mantra

We come and go on this and other threads, i'll never forget the support I got when I was burned to a crisp with rads, or sick with chemo, or scared to death the entire time. Thank you to all.

Oh for the record. 28 years ago, I thought I was DONE with BC. No such thing.

thank you for letting me vent and post.

Val

CallieGirl

I am 8 years out and doing great. I revisit periodically, usually lurking or private messaging. You asked about TN and recon. Everyone is different. In my case at diagnosis I did not know I was BRCA1 positive, but wanted to treat it aggressively. Recon was not an option at the time of the initial surgery simply because my team felt we didn't have time to co-ordinate with a reconstructive surgeon. I wore a prosthesis until I was able to pursue a prophylactic mastectomy on the other side and have not pursued reconstruction. This works for me. I was 48 when diagnosed, happily married, and busy working, traveling, and playing. If I ever decide to go down the recon road I can. For now I am too busy enjoying life! Honestly I think people notice my smile before my chest!

Rads were not recommended for me at the time.

This is a great place for information and support.

Best wishes.

Jody

I always want to say so much more than I do when I’m at the follow ups. It’s because as soon as I start talking they start minimizing my SEs or concerns. Throughout this process I’ve had SEs that are not “the usual “. So yes, I have severe muscle pain in my shoulder three months after chemo - don’t tell me that it isn’t possible for 5 months of poisoning being the cause! It is frustrating. But I usually don’t argue back.

I must say I don’t have any guilt at this point. Maybe when I get further away from it - it’s all still so fresh. I do however have great sorrow when I read on these threads all of the wonderful women who are dying from this dreadful disease.

Valstim52....Hey Val...Seems as though i’m Just lurking these days on the site. But, every time I come on, there you are sharing your own experiences and giving support to the newbies. We’re only 2 1/2 years since we first “met”. I think of cancer recurrence now and the because this is the time when we TN gals are “most likely” to see a recurrence. But, in actuality, I’m moving along, feeling great, but missing my husband who died right before I got my diagnosis. I don’t think I would have been as strong if he had been here. I think of our “group” often and wish there was some way for us to meet up somewhere. ❤️

Flynn I get it. Whenever I hear of somone who has same stage as myself or have small kids have a recurrence it throws me way off. It has gotten better over time as I am four years post end if treatment but honestly I think it is totally normal

VLH/Lyn, May I ask where you got your Flexitouch

VL22 , I'm so sorry that your experience with nontraditional SEs is minimized at your center. I'm treated with such respect and kindness at my center and that's what everyone should have. Is it the whole center that is less responsive? Or is it individuals? Is there any chance that you could see a different oncologist at your next visit? Do you think if you started your visit by saying something like, "I want to talk about my side effects and I need you to listen and take me seriously," that they would respond?

I had shoulder pain, too, but as a result of radiation. Shoulder pain is very common. The physical therapist I see specializes in breast cancer with shoulder pain; that's her whole practice (some patients also have lymphedema) so it is very common.

That is very interesting, ATerry. I agree about seeing a different care provider that will listen to you or that you get along with. My first lymphedema PT couldn’t see my symptoms, even though they were clearly visible. She also didn’t have but three months experience with cancer patients. I switched to a different one and she made a vast improvement in my condition.

Lovemyvizsla my kymphedema clinic liasoned with my insurance company to get my machine. It’s made but Tactile Medical. They have generous payment plans if your insurance company denies them

HERCEPTIN + NEUVAX for TNBC?

I don't fully understand the below article, but it seems to be saying that there are promising results for node negative TNBC patients in a study with Herceptin + NeuVax. Does anyone that is more scientific than me understand what they are saying? Herceptin is usually for HER2+ patients, so that's where I'm confused.

Thanks Beckham2 for turning me onto the article. Another thing to discuss with my MO. I think I am starting to be the squeaky wheel.

https://aonnonline.org/news-and-updates/1026-break...