Calling all TNs

ALHusband

Today I went with my wife for her regularly scheduled 6 month follow up appointment with her MO. All went well. Praise God. However, we were both shocked and saddened when the Physician's Assistant walked into the exam room with no hair! She too has been struck by this ugly disease! In the time span since my wife's last appointment, she (the P.A.) was diagnosed with stage 3 Non Hodgkin's Lymphoma. Cancer apparently grants no "professional courtesy" to medical professionals. Since my wife has also had lymphoma in the past (Stage 4, 20 years ago) the PA told her the roles were reversed and she was helped by my wife more than my wife was helped by her this time around.

Mamiya

ALHusband, cancer doesn't play fair, that's for sure. I am comforted by knowing that a few of my medical care givers have "walked the walk" because they can actually relate to what I am going through (not that I'd wish any of it on anyone, but the experience will surely richen that PA's ability to care for patients). I am also glad when people relate to each other as people, the roles melt away, and something shared makes us the same.

I am so happy to hear of anyone's lasting health with this disease, one year, two years, three - I'll take it. I am still in initial active treatment (which will end up being almost 8 months of chemo plus surgery plus rads) and if I can see three years I will feel so lucky. And then four. And so on, I hope, for all of us.

I am so happy to see that there were several things that look promising for TN to come out of the San Antonio symposium. Always hope!

Una2008

I don't post much but I come and read the board whenever I need the strength and courage to carry on. The women here are my heroes.....its like an all girl Avengers. Some of you came here for support but you give more than you can ever imagine. Thanks ladies.

Cathytoo

I'm new here and new to breast cancer.  But, I agree with you.  The support and stories are amazing.  I check here every few hours.  I love your comment about All Girl Avengers!!!  

Debwarrior

hi

Wishing everyone well here. I hop on every now and then. Wanted to offer some hope to the TN crowd as I am going on 19 years post stage 2b TN idc. Also BRCA1. Had to fight the beast twice but doing great now. Sending my best to all.

Deb

sylviaexmouthuk

Hello Debwarrior,

I have just read your post and just wanted to say how much I admire your courage and determination in all of this over 19 years. I do hope it will be plain sailing from now on.

Take care and very best wishes from someone who is thinking of you.

Fond thoughts.

Sylvia xxxx

Peabrain

@Debwarrior - I am also BRCA1 positive, triple negative stage II (but with two lymph nodes in the mix). I love your post! Thanks for checking in with a big bright sun at the end of my tunnel

ALHusband

Thank you Debwarrior. 19 years is true testimony that this ugly beast can be beaten!

MicheleS

Hi!! I'm bad about posting... But, I can remember when I was dx and it seemed like there weren't many long term survivors posting. So, I hate to jinx myself but on 12/26 it will be 7 yrs (6 since finishing treatment).

Hope that is comforting to someone *out there* in TN-land.

xxoo

LoveMyVizsla

You long-time TN survivors are like a Christmas/Hanukkah gift to the rest of us, thanks for checking in!

SA8PG

Debwarrior & Michele S. I'm so so happy for you guys. That is exactly right MyVizsla "a wonderful gift to us all!" Congratulations Ladies. Thank you God.

Meadow

Una, I too am loving the all girl Avengers! With AL and bch of course! Cathy I am so glad you are here!

Deb and Michele S, you make us all feel so strong. Thank you

JulieAggie03

Debwarrior and MicheleS, thank you for posting. Gives me strength to know you are out there! I'm stage 2b and BRCA1, I have a 4 year old whom I plan to see graduate college, get married, and all the other milestones in between!

BanR

just logged in to say hello to all of u!

read through all the messages......

Happy to see fighter back again..and really really happy to hear that immunotherapy trail, has put her into remission.

Holiday season here!!! This year the climate has really toggled...for the first time there wont be a white Christmas this year!!

Me going good....a strange back pain pops up few days ago and refuses to go. We hope it is muscle pain and not bone pain. I am in muscle relaxant tablets for another few days and post that my oncologiist will decide if a bone scan is needed or not. Anything unusual and which doesn't resolve in a few days..needs a cancer check. This is the 2nd time since October...first it was the strange lump and now comes up the strange back pain....

happy holidays everyone!!

Debwarrior

thanks everyone for the words of support. I was 35 and pregnant with my daughter when I was diagnosed in 1997. Now I am helping her decide where to go to college. What a gift. And I got lucky enough to have a second child even after they told me chemo made me infertile. It has been so hard to give up my breasts and ovaries but I am grateful to be alive. I wish 19 years plus many more for all of you. It is a hard journey but worth it. May you have a wonderful holiday.

Deb

Cathytoo

Thanks, Meadow, for the nice welcome. Wish I was meeting all you super power gals for a cup of coffee instead of this site. But, what can you do!!!

I just spent the entire day with the radiology and medical oncologist. Gave a sample for BRCA testing. Thursday a CAT scan and full body bone scan. Then, in six weeks chemo begins.

Still some discussion as to my "cocktail".

Checked out some cute caps with bangs attached. And, soon off to the wig shop. Maybe I can now see if blondes have more fun. (I'm a brunette.)

Lots to do. My oncologist said I was embarking on my job to be cancer free. Ready to give it my best shot

littleblueflowers

BanR-keeping my fingers crossed and saying a prayer that your back pain is nothing!

SA8PG

BanR. Thinking of you. Praying the back pain is just that, back pain. Enjoy the holiday season. Please keep us posted.

Love, prayers & hugs

G

bluedog

Debwarrior and MichelleS, WOOT!!!!! Thank you!

BanR, thinking of you.

Cathytoo, you go girl!!

LillieRose

Debwarrior- thank you so much! I've been so down since the girl in my support group passed. I read woman dx postpardum are more likely to die from tn and then that woman from my group did! It's all so hard... I keep thinking this is my last Christmas with my daughter who just turned one! Your post is just what I needed! I hope to see her do so many things! 19 years sounds amazing!

I had my 3 month check up (which honestly seemed like a joke, they barley looked at me) but they said all is fine and they'd see me in June! Trying to thinkpostitvie and be grateful for a good checkup but I'm still scared...

Keep the happy long term posts coming! I need them!

Love to all 💛

SA8PG

LillieRose where did you read such a horrible statement about postpartum and poor prognosis?!?! (( We need to start filling your mind with the positive stories. Please try and stay away from Google. As you can read on here, there are a lot of us still going strong. Enjoy your family moments (I know that is really hard to do sometimes but don't let this stupid disease steal your joy!!!!). We are all fighting in your corner. Fear likes to try and come in and shake us up. But remember, the long term survivors on here have assured us that every day, every month and every year get better. Hang in there.

Xoxo

Prayers & love always

G

Lou53

Hi ladies! So great to hear something positive! I start chemo tomorrow and am really scared. I need to hear positive and am amazed at the strength of all of you. I will keep each one of you in my prayers.

ALHusband

Lou53 chemo is going to make you feel bad at times, but not all the time. It's not forever, and you WILL get through it. They have good medicine for any discomfort/nausea you may have so there is no reason to feel you have to be a hero and just endure it. TELL the doctor/nurse what you're experiencing and they can help you! Don't just grin and bear it! As for non medical help...these ladies in here are the best in the business. Every one of them is a warrior who's been through or is going through the same things you're about to embark upon. Take advantage of their experience! Again, you WILL get through this and there IS light at the end of the tunnel!

BanR

It was wonderful reading your story deb! as Lillie remarked ....the thought that this is going to be the last year with my daughter does cross my mind too!! I really want to see her go to college one day...and If i am lucky, who knows ...I might see her get married too!! I am saying a little prayer for us all..

Alhusband...i hope your wife is doing good and is in perfect health..

Lou.. all the best for your first chemo...please remember to remind yourself that "This Too Shall Pass"

Slv..i hope your chemo is over by now. What have they planned next in line.

A big Hi to everyone else.....titan, cocker, jianchi, inspired, simple and so many more, with whom I have been talking since 2013!! Time flies...so much happened in the past 2 years and we are now at the threshold of 2016!!

Allydp

I love reading of all the cancerversaries and long term survivors here lately! Thank you for sharing!

Welcome to the newcomers. I'm sorry you're here but this is a wonderful group of amazing women.

BanR - so sorry you're having a new pain, especially over the holidays. It's always so stressful. I hope the muscle relaxants work and you just tweaked something. I feel like our bodies are more susceptible to those tweaks after chemo. I'm so glad your onc is willing to check it out though if it doesn't resolve.

Hi to everyone else! Hope you're having a wonderful December! xo

robyn31024

SA8PG- Just wondering i noticed we have same diagnosis and only difference was my cancer was 2cm and i had lumpectomy first but close margins so went ahead with bil mastectomy with reconstruction . Did you have radiation? I start TC chemo after holidays and my RO still said he is speaking to another RO breast specialist about radiation still. I just figured i wouldn't need now that had BMX. I mean i knew it was a given with lumpectomy. I had no pos nodes. Anyone have similar case and have rads? And BRBA testing was negative. (some great news) And everyone here has encouraging stories! thanks of sharing!

SA8PG

Hi Robyn

No I did not have radiation. I would have though if they found residual disease at my bmx. I went into surgery thinking I still had .8mm left of tumor according to my scans but the pathology came back as a complete pathological response. It was just scar tissue. I know that every Dr is different. This was the recommendations they gave to me.

When do you start your TC regime?

Hugs

G

breastcancerhusband

Lillierose,

Just to chime in here. There is no real evidence that women diagnosed postpartum have a worse prognosis. Maybe 20-15 years ago breast lumps found during pregnancy would have been put down to natural changes and many patients would have been told to wait and see if the lump went away after birth. Thus in some cases treatment would have been significantly delayed leading to worse outcomes.

Nowadays, every breast lump is taken seriously. Indeed in the UK any lump found in any patient needs to be scanned within two weeks. The fact your lump was diagnosed postpartum does not give you a worse prognosis. As someone else said ignore Google. There is some extremely poor stuff about TNBC on many websites.

I won't say try not to worry, I'm not in your shoes and besides I spend every waking second worrying about my darling wife, but try to remember most women get through this. And some of us won't rest until ALL women get through this. Enjoy Christmas with your baby, it will be the first of many many more!!

Hugs and love from a rather warm London.

Tom

xxx

Allydp

Hi all. I had a trip to the ER last night for chest pain and they found a 2 mm nodule on my upper left lung. My breast cancer was on the left. The PA initially came in and said my chest CT was clear for a PE, which prompted me to ask if that also meant it was clear for mets. She was clueless and called the radiologist right there in front of me. I could hear his answer regarding the nodule. She then flippantly tells me it may or may not be mets and they just have to follow it with scans to check for change!!?? So I'm supposed to go on with daily life now wondering what the nodule could be?? I've had numerous scans since dx and no one has ever mentioned a nodule so I have to think it's new, and that's what really scares me. I didn't have radiation, pneumonia or infection either that could explain it. I wanted to post here though because I thought I remember someone else having these nodules pop up that turned out to be nothing. Does anyone have any experience?

greenae

Ally

I know that up to 50% of CT scans of the chest show pulmonary nodules. Most are benign. My husband had a lung ca "scare" and it turns out he has multiple benign nodules. Please call your MO and talk about this finding. I am in your pocket for a benign incidental finding! Hugs!!!

Arlene