Calling all TNs

avmom

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Lovemyviszla, there is no question that rads would have been done if I had a lumpectomy. I'm not sure that being TN or not would have mattered. My understanding from my MO is that, if you have invasive disease, the standard of care is to treat the whole breast. Lumpectomy plus rads, or mastectomy. Radiation is a local/regional treatment and can be indicated if there is any indication of disease in the lymph nodes. That said, I think there has been some research published since my treatment last year that suggests that mastectomy plus radiation could be of benefit if there is any lymphovascular invasion, whether or not anything shows up in the lymph nodes themselves.

As with everything here in cancerland, no treatment option is "free". Every choice is fraught - some potential benefits, some risks that may or may not affect you individually, and always having to decide in the face of uncertainty. If you don't have a recurrence, you will never know whether your treatment plan was just right, or if you "over treated" - not great if you have severe and permanent side effects that reduce your QOL. On the other hand, if you do have a recurrence, can you be comfortable with the treatment choices you made? It is so personal, how we each deal with risk. For me, if the RO had said that the potential benefit was even a tiny bit greater than the risk, I would probably gone for it, but I would have dreaded it every step of the way. I'm pretty risk averse and if I recur I am sure I would regret turning down any recommended treatment. Others can and do react differently, and I don't think there is any universal "right" answer. Ultimately, we all live with our treatment choices individually, so even going through the process is a voyage of self discovery.

yodez75

Forgot to mention that I have swollen axillary lymph nodes on the same side as my BC. i had 2 separate lymph node biospsies at my breast Center, plus my biopsies during surgery and all lymph nodes came back negative. So, all that makes me wonder about rads as well...

Cocker_Spaniel

Been off the board for a while and so glad to see everyone chatting and helping each other.

Six weeks ago was moving at work into a new building and was working 6-7 days. Got so tired that I got out of bed one night to use the bathroom, went straight past it onto the landing, turned left and went from top to bottom of the stairs. Gashed all my legs badly and it's still not healed yet. Had to take time off work to try and heal with my leg up but the wounds have not yet closed over. To try and break my fall I held on with my arm that has LE and wrenched it badly so a good time was had by all. It's a darn nuisance and I wish that it would heal. Have to get my left leg dressed twice a day and it looks like it could be ongoing for a while.

So hard to catch up with everyone's posts but somebody mentioned rads. Although I had a left mastectomy I had rads because it was in four nodes. I must say though that rads was a breeze for me. I sailed through it with no side effects whatsoever, not even tiredness.

Hoping to catch up with you more as my leg heals as its hard to sit at the computer. Warm hugs ladies (especially as its winter here in NZ). Annie. xxxx

LoveMyVizsla

Oh no, Cocker! Hope you heal soon.

Yodez, I think they recommend rads for all TN patients. Not looking forward to it.

anotherNYCGirl

Oh Cocker! I am so sorry to read of your fall! Hope you are back to yourself SOON!!

Hugs from NYC (where it's not winter, but it's too hot and humid! )

JanetCO

I would like to be part of your group.

I was diagnosed and had a lumpectomy a week ago. Went for routine mammogram it was found. Will be seeing Oncology this week and next. I just turned 58. 2.4cm tumor lymph node only had 1 cancer cell in it so considered negative they said. I keep reading TN response well to chemo. Prayers to everyone! Know how you feel.

Luvmydobies

(((((HUGS))))) Cocker! I'll say some prayers for you. I'm so sorry to hear about your fall! Hope you're well sooner rather than later.

JanetCO welcome! So sorry you have to be here but this is an awesome group. We will be here for you and help you through this. Just hang in there and let us know if you have any questions. Chin up!Prayers going up for you! (((((HUGS)))))

anotherNYCGirl

Hi Janet! Welcome to the group that we all wished we didnt need, but we are all so glad that we found!

Shopgal2

oh no cocker. Feel better.

Welcome Janet.

Ladies I need your support. I go for my first mamo on wed since finishing my treatment in February. I am really nervous. I just passed the 1 year anniversary of my original lumpectomy which was 6/29/15 and am scared that my mamo will not be ok. I can't sleep tonite and am trying to think positive thoughts. Please hold me in your good thoughts.

LoveMyVizsla

((Shop gal)). It's just another picture. I have my 6 mo. Mammo on Monday. I have zero confidence in mammograms, since my tumors could not be seen on it. I meet with my surgeon right after that, about my re-excision. I plan on asking her whether I should have an MRI before the surgery.

Taxol (abraxane) #11 oN Thursday. I think I can, I think I can.

Triplegirl

Cocker I hope you feel better.  That is one nasty fall.

Janet welcome you will find much support.

Shopgal-try to get rest this evening.  I would take a Xanax(valium) tonight and maybe before you go in tomorrow.  I know it calms my nerves and it wouldn't affect your mammo. 

Just an fyi to all if my pre op tests go well on Friday I will have my double mastectomy Monday morning.   I had a bad case of C-diff this past week which they said was from the chemo so I skipped my last chemo of Taxol.  Wish me luck:)  Bye bye boobs......onward and upward to my new normal.

Janice

Cathytoo

Cocker...Feel better soon‼️

Janet...Welcome to this awesome group. Wish we were a book discussion group instead of TN. Stay strong and keep good thoughts. We're all here for you.

Shopgal...I know exactly how you feel. Hope you get good results. Keep us posted.

Cathytoo

TripleGirl...will be thinking of you. Hope all goes well with your surgery. Wishing you the best of luck. Stay strong. ❤️

kellychameleon

Cocker, I'm so sorry about your fall! That sounds horrible!

Shopgal, Good luck!!!! There is nothing more stressful than getting tests/waiting for results. Good thoughts to you.

Welcome, JanetCO.

Triplegirl, good luck with your tests and surgery!

I started my new regimen (Carbo and Xeloda) yesterday. Walking into the infusion room for the Carbo was super depressing. I walked past that stupid gong that I didn't want to bang back in April, but the nurses would not take no for an answer. And now Im back. The nurse had trouble accessing my port - had to stick it twice, and press on it and move it around. I'm just 5 weeks out from surgery, and that hurt so bad. I was an emotional mess. It's only 4 infusions (spread out over 3 months). Then hopefully I won't see that place again.

No side effects from either drug yet. I just feel like I have a hangover this morning (without the fun night before!)

My oncologist is also now recommending that I have my ovaries removed. She's treating me as if I'm genetically positive even though I tested negative for the full panel. But my mom, grandmother, and great grandmother all had breast cancer, so the family history is very strong. I am okay with all of these changes of treatment - my doctor is constantly researching, and if it gives me even a slightly better outcome, I'll take it. It's just hard knowing that the end of this is not in site for at least another year.

simplelife4real

Hi All,

Things are going good for me. In 26 days, I'll be at the three year mark.

I just wanted to post this article because it is so encouraging. Finally, targeted treatments for triple negative breast cancer.

ScotBird

Just want to say that I haven't posted much, but do always read the thread. So sorry about the injury (Cocker), stress (Shopgal) and extra unwelcome chemo (Kelly). Hi Janet and welcome. This is a lovely supportive and kind group. We all have the same thing, and there's a big comfort factor for me in knowing that we're not alone, even though we are far apart around the world.

Simplelife thanks for that link, interesting and encouraging. Congratulations on your milestone, that is so good! XX

Shopgal2

thanks for all your kind words. They help. I went for my mamo this morning and it was like 2 years ago all over again when my cancer was first found and I was told to wait 6mo for a repeat mamo. This time I had a diagnostic mamo and again needed additional views of my left cancer boob and the tumor surgical bed which freaked me out. I had to wait quite a while to have the radiologist tell me that I had calcifications in the surgery cavity and they were fat necrosis. She said it was expected for a pt who had previously had tx in the past year esp surgery and radiation. Again I was so upset and crying. I asked if they could do an ultrasound or MRI or even biopsy. The radiologist said that they couldn't because there was nothing to biopsy wih a calcification in the empty surgery cavity. I guess I wasn't hearing her and trusting either. So I called my surgeon who read my films and assured me that he sees necrosis all the time and it was expected and a bit normal in patients with rads. He said I only finished rads 4 months ago and it takes time to have the cavity fill in. He said if it was anything they would have had me do a biopsy right then. He made me feel much calmer. I guess I wasn't expecting to hear repeat mamo but I am grateful that I have a good team at Jefferson in Phila.

Cocker_Spaniel

Thank you for your good wishes ladies. Hope this darn leg heals soon as its so painful.

JanetCO welcome to this wonderful group. You will find nothing but support and kindness on here.

Simple roll on for the next 26 days. Reaching three years is a great milestone. Onwards and upwards from here. Thank you for the article. I so hope it is something that will help us TN's.

Shopgal thank goodness for fat necrosis. Many on here have had that. Glad your surgeon made you feel calmer and happier.

Kellychamel so sorry you are having a hard time of it. Glad you have no side effects. Sending big warm hugs.

Triplegirl in your pocket for surgery and hoping all goes well.

Annie

ajb_12345

Update: I had left mastectomy on May 19th with tissue expander, 3 lymph nodes removed. Clean margins, nothing found in the lymph nodes, but a few single cells left in the mostly dead mass. The second best outcome possible, and I'm happy with that. I did have some crazy complications after the surgery. A couple of days after my drains were removed, I developed some bug bites along my bra line on the left side. Well, I thought they were bug bites, turns out it was shingles. Then the shingles created a secondary skin infection (cellulitis) in the reconstructed breast. That put me back in the hospital for a few days for IV antibiotics. I had a PICC line placed in my right arm and sent home to do IV antibiotic infusions myself. I was having increased problems with my right arm and a week later was sent back to the hospital for an ultrasound. There was a clot in the PICC line. PICC was removed and was put on oral antibiotics and Xarleto for the clot. Now everything is cleared up and radiation is about to start next week!

Joy777

Ajb, why are you taking afinitor if you are ER negative?

And why are you stage 2B if your tumor was 2 cm and no nodes involved

Meadow

Oh my gosh, my dearest Cocker. I too have been off the boards for a few weeks, and although I want to respond to the newbies, and those in treatment, I cannot think of anything except you going down the stairs in that awful fall. I am so sorry. I am sure it will take weeks for you to heal. Please know my thoughts and prayers are for you.

Cocker_Spaniel

Meadow my dear friend it really has been a trying time trying to work with a really sore leg. I had to have a week off because it wasn't healing and was told to put my leg up for the whole week. Only now does it look like it might be coming right but still a long way to go. When I do something, I do a doozy. On top of that we are moving house so its a little bit of a frenzy at the moment. It was too sore to sit at the computer so it must be coming right now, I hope. Thank you for your prayers and love as I send the same to you. ((((Hugs)))). Annie xx

ALHusband

Cocker you whipped the pants off of TNBC and now you're letting a set of steps conquer you? Enough of that nonsense! Get better fast and show those steps who's boss!

Cocker_Spaniel

You are quite right Mike. No more feeling sorry for my poor leg from me. It's still not healed but heal it is going to. I told it today when it was dressed, quick stalling like Mike said and get me back to walking properly and not like a duck. No more nonsense from now on and the stairs can take a running jump. lol. Thanks for your pep talk Mike it really cheered me up. xx

Meadow

I just learned that my Oncologist was killed in a car wreck last night, he was the kindest man, so brilliant too. From day one he gave me hope, he told me he had patients with IBC, and they did well, and he expected me to do well too. That gave me a positive outlook from the beginning which I believed helped save my life. One lady I know whose mother died about 10 years ago, told me he would lay down on the bed to comfort her in her final stages. Such a wonderful man, such a great loss. Tears today.

Valstim52

Oh Meadow that is such horrible news. Tears with you. It's so hard to find a caring good Dr, who is honest but caring. My heart goes out to you

LoveMyVizsla

((Meadow)).

anotherNYCGirl

Oh Meadow! I am soooooo sorry! What a tragic loss to his family and all of his patients!

Sending hugs

Meadow

thanks ladies. I am taking it hard, can only imagine how his family is handling the loss of such a kind man.

Allydp

(((Cocker!!!))) I am so incredibly sorry to hear of your nasty fall! I sure do hope you heal quickly and Old Feller is taking good care of you! I'm glad to hear you've taken some time of work. Although it doesn't sound like you had a choice, I'm still glad you're at home resting. Take good care and keep checking in. xo

Simple - 3 years?! Amazing! I remember you being somewhat fresh out of treatment when I came to the boards. I'm so happy for you and your milestone is not only especially moving for me, but a real inspiration. xo

Meadow...I'm so so sorry!!! My thoughts and prayers go out to his family and friends, but I'm sure it's also quite a shock and devastating loss to you as well. We walk these journeys with our doctors and they become such pillars of hope and trust for us. My OBGYN who sent me for my initial mammo moved to Florida just after I finished tx. She called me once a month on her personal time to check in on me. When she told me she was moving, I cried like a baby right in front of her. I was so embarrassed. But it's hard not to form a bond with your doctor after going through something like this. Such a tragic loss for you, his practice and family. Sending you big hugs.

Shopgal - those scares are the worst! So glad it was fat necrosis and your BS was able to give you some extra reassurance.

JanetCO - welcome. So sorry you're joining us, but we're all here for you!

Sorry to anyone else I've missed. Sending you all love and hugs. xo