Calling all TNs
Comments
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Rhiannon I'm so very sorry for all the personal losses your family has had because of this disease. My thoughts, love & prayers are with you for your scan in August. I pray that tomorrow you have a wonderful, full & blessed birthday. You certainly deserve it!!!!! Happy happy Birthday!!!!
Hugs,
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Hi everyone. I am sorry to hear about your loss Rhiannon. This is such a horrible disease.
Happy 44th Birthday Rhiannon! You will have many more!! Take a deep breath and do something special for yourself today.
I just wanted to let you ladies know that I have hit the 5 year mark since diagnosis.The first year was hard and an adjustment but the last 4 have been pretty great! My kids were finishing preschool and grade 1 when all this started and now they are entering grade 5 and grade 8. My 10 year old daughter is almost as tall as me!
This is definitely a game changer in your life (at least it was for me). I am more interested in living for the moment and less willing to wait on enjoying things in life. Take care ladies and keep the faith that you will get through this! Before you know it you all will be posting your five year mark on this thread! Karen
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Rhiannon - I am so very very sorry for your loss. My heart, love and prayers go out to you and your family.
Karen - congratulation to you on the huge 5 year milestone. Huzzah!
Curly - You're not alone...I cancelled my last follow up! I just couldn't do it. It creates so much stress for me...just for them to ask how I'm feeling and me to say fine and be on my way. If I had a symptom of any kind, I would've gone, but I've had so many scans in the last couple years, I figured skipping this one 3 months follow up wouldn't hurt. So then I go to refill my script for my little ole Levothyroxine thyroid med with my PCP a few weeks later and they tell me they won't fill it until I have bloodwork and a physical, which was a first. Couldn't help but feel that was God's way of having me seen one way or another lol. And wouldn't ya know...for the first time in my life my cholesterol has ticked up over borderline. I've actually been eating fairly healthy and lost 10 pounds so what the heck?!
I'm blaming menopause. That's my excuse for pretty much everything these days.
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Rhiannon so sorry for your loss. Cancer sucks. Huge hugs to you.
Kayrem congrats on hitting the 5 year mark. That's a big milestone.
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Rhiannon, I join the others sending sympathy and hugs.
Kayrem, - Always great to read of 5 year marks!
BE WELL wishes to all!
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Thank you all for your condolences and well wishes.
Kayrem congrats on reaching the 5 year mark!
Thank you all for just being there for me to sound out my fears....only someone who has gone through or is going through it truly understands.
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Kayrem congrats on 5 years.
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Ally - the cholesterol! I have the same thing! I eat well, never had any issues with it before and now wham! I too am blaming menopause - but how ironic!
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Hi all!
Since I am TN, is there a good chance I will have to do rads? I had total left mx on 6/21, negative nodes, tumor 4.5 cm. From most of the posts on this page it sounds like rads is pretty standard for TN's. Thanks!
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Yodez, my TN IDC was 4.5 cm with negative nodes and I did not have rads. I did have good margins and did dose dense AC followed by dose dense paclitaxel. Even with a huge (8 x 8 x 3.5) bed of DCIS, the RO's opinion was that the risks associated with rads outweighed the potential benefits - only about a 5% reduction in recurrence risk for me
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avmom, I wonder what they would have said if you had a lumpectomy and not mastectomy. They would probably have recommended rads.
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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.0 -
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.
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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...
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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
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Oh no, Cocker! Hope you heal soon.
Yodez, I think they recommend rads for all TN patients. Not looking forward to it.
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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! )
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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.
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(((((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)))))
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Hi Janet! Welcome to the group that we all wished we didnt need, but we are all so glad that we found!
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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.
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((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.
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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
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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.
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TripleGirl...will be thinking of you. Hope all goes well with your surgery. Wishing you the best of luck. Stay strong. ❤️
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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.
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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.
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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
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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.
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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
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