Calling all TNs

TNpotato

Lookingforward66 - Waiting SUCKS!! I'll keep you in my thoughts and prayers... may it be only good news...

georgie61 - Thinking of you... Hope that the end of the week has treated you better!

Healing hugs to all!

georgie61

Thank you everyone for the prayers and though4s, I don't have a real computer to type on niw, but will tomorrow. I just waned to let you know that I read everything and really appreciate it. Xoxo

Lookingforward66

Thank you for good thoughts& being in my pocket. Texted my BS....he wants me to keep him in the loop & before any surgery he wants a PET scan. Keeping positive as much as I can.

Thanks for listening,

Marsha

anotherNYCGirl

Marsha, - I bet it is another benign polyp!

jdash

Diagnosed at 39. Stage 1. Triple negative. Lumpectomy and radiation. Fine for 10 years. Re diagnosed same breast again at 49 Triple neg stage 3B chemo ACT and then double mastectomy with nipple sparring surgery. Now 10 years later. Worried at that 10 yr mark. The time everyone should feel safe. Out of work. Worrying about supporting myself and I guess that led to me worrying about bc again Lost my first husband at 30 to aa rare cancer and last year lost my significant other to lung cancer at 57. 90 days after diagnosis. This site was my life saver just felt I needed to check in again.

georgie61

Sincere and loving thank yous to TNPotato - Cocker_Spaniel - Valstim 52 - Jacklin - Scot Bird - Another NYCGirl - Love my Viszla - Cathytoo - and Allydp

I did go se my PCP here, but I think she felt a little out of her element. She wrote me a rx for my painkillers, told me to keep up the anti depressants and just to Heal. I'm trying. I'm still crying a lot - frustrated with the painful recovery and puzzled by what to expect. This was such a great place to know what to expect with chemo, rads, surgery etc... but there is nothing like that I know of for my head injury and physical ailments. I do appreciate all of the support, and of course, I want only the best for all of you wonderful ladies. xoxo

Cathytoo

georgie61...Sometimes life just sucks‼️ Cry as often as youwant. Allow yourself the freedom to give yourself a big pity party. But, keep in the forefront of your mind that you will heal and feel a bit better every day. Anytime you need to let it all out, come here. We're all here for you. Stay strong. ❤️

Valstim52

Georgie61 in your pocket for whatever you need. Cry, have a pity party like Cathytoo says. Anything to get you through

. As I've shared, my rad burns are kicking my but, but woke up today with my leg 2x the normal size at the knee. I had a broken knee cap 3 years ago, and looks like it has chosen now to flare. Going to Dr tomorrow. I have arthritis in that knee and with the old injury who knows. Back to Dr's again. Hobbling and burns.

Jdash, it is totally understandable that you have the 10 year anxiety. Anyone would. Know we are here for you. Sending Gentle waves to all. I agree this site is a lifesaver.

Val

Allydp

Georgie - agree with other. Cry, throw things, scream...whatever you need to do. I hold everything in which is not good for the mind, body or spirt. So let it out! We're all here for you.

Marsha - I think it's amazing you can text your BS. Sounds like you got a good one! And good for him for being so proactive for ordering that PET just to be sure. We're here waiting with you. Check in as much as you need to or want to. Sending you big time hugs.

Jdash - cancer is so unfair. I hate the anxiety is causes and I'm very, very sorry you lost your first husband to this horrible disease.

Sally22

Hi all,

Freshly out of radiation and chemo longer even though the scars are still there to see visibly, (chemo burn on my hand and hair coming back) I am also going thru the anxiety of worry. Over the weekend Dr. Office called to remind me of upcoming appointment. Don't know why they called its 2 weeks out but they did and I lost it, started to cry when I seen the number come up on caller I.D. Feel also like there are triggers that give me PTSD any good advise on how not to worry about the what "if's".

TN Sister

Valstim52

Need help? Is it possible to have lymphedema in your leg area? I was tested at the hospital for a possible blood clot, and they said it's lymphadema and have referred me to a lymphadema specialist? I thought it only occurred in your arm or trunk area?

Lou53

Hi all,

It has been quite a while since I last posted but find myself in need of some advice. I had a lumpectomy last October, finished chemo at the end of March 2016 and radiation mid June. I went today for my first follow up after treatment with my oncologist. He tells me (which I remember at the time) that my first pathology report had a slight positive for ER but the final pathology showed triple negative which is how I was deemed. Now he is wanting me to do hormone therapy. He said not Tamoxifen but Arimidex, Femara or Aromasin. His advice was to use every weapon available against this diseas recurring. After reading the side effects of these drugs, I don't know that I want to take anything! Has anyone else experienced this?

Meadow

Sharing with you all my joy today, it is my 3 year cancerversary, and I am, thankful to be NED today! Yay! I feel good. Thankful for this milestone in my recovery to lifelong good health. THANK YOU all for being a huge part of that recovery. I know you "get" it. Love you all

Georgie, Sending you my hugs and prayers. I think that is just the pits, to be injured so badly. You are a tough chick, to be sure. But do you have to prove it like that?!....lol. Seriously, so glad you are ok, healing. Hang in there.

Looking, I agree, polyp. you know we have your back, sending support to y ou.

jdash, my heartfelt sympathy to you on your losses, and I am glad you came to a soft place (here) for some support.

Sally, we all have our moments, for sure, when we lose it. It is only natural. Hoping you feel better today. I try to fight the worries with the thoughts that I cannot change one thing in my favor with worry.....if we could, we would worry all the time wouldn't we! But we cannot, and worry just robs us of our joy, our strength.for today. And we need that strength,to fight for our good health, to be there for our loved ones, to live with joy and purpose. How are you feeling, physically? If you can, get outside for some fresh air every day, if you are not already. And get your mind on other things beside your health, I know it is hard, but other interests are always good medicine. Sending my best hugs to you!

Val, Do you think your knee/leg is swelling from treatment? Has it done this before or is it new? And the results were sure it was not a bloodclot? Seems odd, have you popped in the Lymphedema forum to ask? There is a ton of knowledge in there.

Lou, I do not have good advice for you regarding the meds you describe. I too have read about those side effects, it has always been a silver lining being TN, to not have to deal with those. So I can see your reluctance to take them. But I know you want to listen to your team, and do what you need to, to win. Hoping others will chime in soon to give you their advice.

Curly, so excited about your trip to see VInnie! I want to know all about it!

Ally, sending a big o hug to you my sweet friend, just because I love you!

Cocker, hoping the leg is not giving you any problems. Are you watching the Olympics?

Another, SA8, shorfi, Cathy, greenae, Al, Potato, luvie, Goldie, adagio, Sylvia, Scotbird, Vizsla, Shopgal, Jan, BanR and all of you I missed, sending you my love

LoveMyVizsla

Congratulations Meadow!!

Got my re-excision pathology yesterday. They found a small amount of remaining DCIS that she hadn't gotten in December. She said we needed to do this surgery. She was right. Sleeping more soundly now, but not on my bruised breast. ;-)

Cathytoo

Meadow...CONGRATULATIONS on 3 years. You must be thrilled. Thanks so much for letting us in on the fabulous news. And, thank you so much for all the support, kindness, wisdom, and caring you give to us all. We are so lucky to have you with us.

Cathytoo

LoveMyVizsla...it's 11:30pm as I write this. Hope you are sleeping soundly knowing that the surgery is over. Sometimes things work out for the best. Your second surgery is a good example. ❤️

Shopgal2

yay and huzzahs meadow!

Lmv rest easy. Glad the surgeon did the reexcision. I also had an area of dcis with my reexcision.

lou tough call on the hormone therapy. But if I was offered I would want to do it.

Val maybe do a search on bco in the lymphedema topics.

To all the newbies welcome. Hugs to all in need.

anotherNYCGirl

YAY Meadow!! So happy to read your post! Thank you for sharing and for including us!

Wishing you, and all here, the best of health always!!

Lmv, good that you had the procedure and are already on the mend!!

LifeAloft

Congratulations Meadow!!! Such great news!!

jenjenl

Lou, why is the MO recommending that? TN isn't hormone driven so im not following the intent. Its designed to be effective for ER+, not sure there would be a positive effect for the negative symptoms of taking them. I suggest more understanding.

Ag23

Lou53-

I thought there may have been a thread on this site related to this, but I actually think it's on the tnbcfoundation.org site. My first pathology report said that PR was 'equivocal' so Dana Farber retested it a 2nd time and their lab in Boston (I was being seen at a satellite location) said I had 30% PR receptors (but was still triple negative). My doctor said that I was still a "true" triple negative and they would treat me as such, but she said that she may consider adding Tamoxifen after treatment ended. After finishing chemo, I decided to enroll in a clinical trial doing concurrent rads and Cisplatin chemo (because I did not respond to ACT chemo). In order to qualify for that study, I had to be a "true" TNBC case, so they sent me slides out to a lab in California to reevaluate for a 3rd time. They said they didn't find any PR receptors. When I asked my oncologist about this, she said that it could have just been the small sample of the tumor they used the first time around that had the cluster of PR receptors - that the make up of the entire tumor isn't going to be uniform. All in all, she said that my cancer looked and behaved like TN, so it was TN. After the last pathology read came back at 0%, she discussed with the Dana Farber tumor board, and they ultimately decided that Tamoxifen was not worth the side effects since the jury was still out on whether or not it would actually help prevent the cancer from coming back since I was more TN than anything. But, I recognize that ER is a different story. From what I was told, it's near impossible to have PR without ER (as in my case). But you obviously can have just ER as in your case, if that makes sense. Since there are so many side effects, and since it could possibly help you, I would get a second opinion regarding this (and maybe have their pathology dept retest the slides). I did, and it helped ease my mind that the right decision was made. Good luck to you!

Cathytoo

Mixed Tumor DCIS/IDC...My tumor was so mixed that the slides were sent to three pathology labs, finally winding up at Mass General. I wonder if a mixed tumor gives you better odds for no recurrence. Does anyone have any info on this? My MO refuses to discuss statistics.

Lou53

Thanks Ag23! There is a link on somewhere on this board that addresses the difference pathology reports with mixed results. I think I will ask about having another test to make sure. I know that some people don't experience side effects but I would rather not have to take something at all if I didn't need it rather than take a chance.

VLH

Not hormone receptors, but I shared that the HER2 status of my core needle biopsy was positive, but my lumpectomy / solid tumor pathology report showed me as triple negative. ER / PR status was consistently negative in both reports. Given that the treatment plans are quite different, the conflict (called discordance) is disconcerting.

ScotBird

Huzzah Meadow. Fabulous news that you have passed the 3 year point with NED!

Vizlas hope you are recovering and resting well. Glad they have got it all now.

Lou sorry I am ignorant about receptor status, and agree with jenjen about trying to get more information as this stuff seems to be super complicated. Hope you can get some enlightenment so that you can move forward. X

LifeAloft

What a coincidence that you guys are talking about this right now. I just saw my MO today and she threw me for quite a loop. My surgical pathology (residual 2mm tumor) was 2% ER+ and my MO brought up Tamoxifen, she said it may help an ER+ occurrence in the future, and that I'm "young" (45). I was surprised that she even brought it up. Luckily I have until November when I see her next to decide if I want to do it. When I brought up the side effects she said we could try it for 3-6 months. I have no idea at this point what I want to do. My thought driving home was that I'd rather have a hysterectomy and have my ovaries removed than be on drugs for several more years. Yay...more decisions to make 😝

Scamp

Thanks so much everyone for the words of wisdom! Getting my son ready for his first year of college really got me out of worrying about myself. I've started water aerobics and yoga for relaxation and strength. Its making a difference. Have a follow up on Monday and am not as anxious as I thought I'd be.about it. My new motto is Live, Love and Laugh! I am striving to be joyful about everyday! Love and Hugs to everyone!

Lou53

LifeAloft, I would rather have the surgery also but myBRCA came back negative so I don't know if that is an option right now. I was just getting used to being "done" with treatment and decisions and yet, here I am again. The list of side effects is staggering even though the chances are slim of getting those. One of them is hair thinning and loss. Seriously????? Ugh

TNpotato

georgie61 - Ditto on what everyone said above - come here and hang with us when you're feeling overwhelmed! It's what we all do for each other as it is, so why the heck not toss your Evil Knievel act into it too?! (seriously tho, hope the pain is getting a bit better and you are healing! HUGS!)

Lookingforward66 - Positive thoughts heading your way! May there only be good test results!

jdash - Hugs to you! I'm so sorry to hear of your losses. It is so unfair what you've already gone through. I hope your worries ease and happiness returns to you!

Valstim52 - I hope your knee is doing better! ((HUGS))

Lou53/Cathytoo/Ag23/VLH/LifeAloft - Most of what you all were saying went ZOOM! right over my head! I had no idea that there could be a mix like that, or that there was variation in the test results - it's the first I've heard of it. I hope your docs can help clarify questions and that it helps you to make the right treatment choices. Like LifeAloft said: "Yay...more decisions to make 😝"

Meadow - HAPPY BELATED CANCERVERSARY!! <--that's me singing for you! lol "May you have many more!!"

LoveMyVizsla - KIck that cancer butt!! Glad they got it all! Hope you're recovering quickly! (I'll check back with you in the surgery thread!)

Shopgal2 - Hugs to you! (I grew up in Pittsburgh, everytime I see your pink warrior woman I smile!)

Scamp - "I've started water aerobics and yoga for relaxation and strength." Good for you! I didn't know water yoga was a thing!? That sounds like fun! And I know what you mean about your son getting you out of thinking about yourself - my son had all 4 wisdom teeth out on Monday. Boy that really was a great distraction from worrying about me for awhile!

I told him I better get better pain meds than he got this week though! ((HUGS)) to anyone I missed up thread!!

Valstim52

Congrats Meadow. You give us newbies hope.