Calling all TNs
Comments
-
I don't know anything about Paget's. Is chemo not recommended for it? Sorry you are here Seraphima, but welcome.
I have a question, which I think has been asked before. When does your recurrence clock start ticking? After all the treatments? Upon diagnosis?
0 -
Thanks, another NYCGirl! I'll try to keep up, but I'm falling behind in another forum I've been a regular in for years.
LoveMyVizsla - I think it depends, iirc. I'm really on information overload, since it took a little while for the idea I had cancer to sink in, and for the past month I've been foggy-brained a good bit of the time from the two general anesthesias from surgeries. But I think they sometimes do. I'll look at my schedules - I don't think I see the oncologist again until after rads start. I didn't WANT chemo anyway, but I was following their recommendations. Paget's is not aggressive, and my other biopsies were all clear, so maybe that's why no chemo. But triple-neg IS aggressive? So I'm confused again. I'll get there.
But I may not manage to find another person who has Paget's AND is triple-neg.
Thanks!
0 -
You could try scrolling through these TN pages, looking at people's diagnoses and look for someone with Paget's. You can always message them if you have questions.
0 -
That's a good idea. I spent a little whie lookng through the Paget's thread for TNs. I will try the reverse. Thank you.
0 -
Hi y'all...i haven't posted in a while I'm sorry for abandoning the group! Life after chemo and surgery has been busy with vacations, work trips, turned down a job offer and almost moved to Philadelphia/decided to stay in TX, and my son started Kindergarten! Just feeling sorry for myself today needed to post where people understand. At another 3 month follow-up with my MO today, everything is fine I'm doing great, yada yada. It just sucks that I will have to follow up like this for the rest of my life and that no scans are done unless symptomatic...uh if it's symptomatic then it's too late! I feel like a ticking time bomb. I know I'm "lucky" I got a PCR and I should be ok but still I just have this unsettling feeling I can't shake.
Have my stage 3 recon surgery tomorrow, getting my right side pocket adjusted to make things more symmetrical and decided to go with fipples...maybe looking more "normal" will help me feel normal again!
Hugs to all, thanks for listening, I will try to read back bit and catch up!
0 -
JulieAggie03...I know exactly how you feel. I am finished treatment...which went very well. Feeling great. Looking great. Lots to do...eating well, low fats, exercising daily. BUT...breast cancer never leaves my mind. I even dream about it. My TN diagnosis is like an axe over my head. Wish I didn't think like this. I think,being TN, cancer will be a part of me forever.
0 -
Well after getting a scope shoved up my nose, the ENT specialist indicates it is not cancer, it's a minor case of laryngitis. so that's nice to hear! Just thought I would give everyone an update in case somebody else had an issue like this in the future and was searching for it.
my daughter turned 9 on Labor Day and she had a great birthday! I love all of these milestones.
0 -
Oh Cathytoo, I'm right there with you. I feel like I have a cancer bullseye on both my back and chest.
0 -
Valstim52...do you think you ever really feel carefree again
0 -
Hello to all,
First to those that wonder if we'll ever feel care free again. I can say most days yes. Sometimes the "what if's" creep in but mostly now they are carefree.
Now on to my results. CT revealed "No Cancer". But need to monitor throat growth & decide if needs to be removed. Looks like old tonsil growth at base but growing in lump style at base & therefore sometimes causes choking & cough. So may need to be removed.
Dodged a bullet....feeling like my Angels were watching.
Wish all good health.
Marsha
0 -
I think right now, I may never be carefree again. After my first BC dx 24 years ago, it took almost 5 years. Mainly because they kept saying if you make it 5 years you will be ok. Based on what? who knows. So now, I'm older and much more aware of the fact that I could recur. Especially being TN and IBC.
I want to get to the point where it's not on my mind every day all the time.
0 -
Valstim52, keep saying your signature quote to yourself. You have to have that self awareness when those thoughts creep in you knock them away. Do you work or volunteer during the day? Do you have some type of routine that keeps you physically or mentally busy? Yes, you may recur but its not today and maybe not tomorrow.
xo
0 -
You are so right. I have to apply what I've usually done in life to this point to myself. I was to start back to work this month, but it's delayed due to my mild stroke. Though it's part time, I personally know that time will help. I just always bounce back and wonder, how much time will I have. See, there I go again.
It's when I settle down, and do some 'me' time, I do reflect more on the future than I used to. I have to sink into a different mind pattern. Just not so easy this time.
0 -
Val I just want to give you a huge hug. You will find your path and it will be carefree at times. Life is about living thru all the bumps in the road. It makes us who we are and shapes us. I am having a hard time since my mom passed 2 weeks ago. I am wishing for a year without anything bad happening. In 2014 I had a knee surgery and a month after I was caring for my mom who had a small stroke that resulted in my putting her and my dad in assisted living. The same month my mom had her stroke I had my mamo that originally said to repeat in 6mo that turned out to be cancer last May. Then a crappy year of surgeries, chemo and I finally thought this year that after rads I could put the bad ness away. Then mom died suddenly. It just makes me sad. I know that it's just life and it will get better. It just takes time. Take it one day at a time, one foot in front of the other. Enjoy each day and the people in your day.
0 -
Hello All,
I am having a difficult time getting past aches and pains and not thinking it is cancer growing in my body!!! I did NOT get a PCR for my little tumor in my breast and the spread to two of my lymph nodes (took about 21 lymph nodes and had 30 rounds of radiation after my BMX).
Anyone else doing well even though you didn't get a PCR???? I keep thinking not getting a PCR is a death sentence. HELP!!!
Janet
0 -
thanks so much everyone and especially shopgal2. I hope and pray for peace of mind.
0 -
Hi, all! I've been absent from the Mother Board since joining a very supportive Facebook group of chemo sisters who started at the same time I did. However there's only one other girl who's TN and we're just so.... odd.
AC is done, I just completed 8/12 Taxol, and now surgery options are my constant companion. Lumpectomy? Double mastectomy? If BMX, reconstruction or flat? If recon, nipple-sparing or not?
Breast surgeon is very conservative and says lumpectomy is fine. I've always said BMX is the way to go if it ever came to it. I hate the thought of rads (and the 45 min drive each way on a good day for 6 weeks) but the "easy" lumpectomy sounds nice.
BUT... what if the cancer comes back? If I did the lumpectomy would I be upset I "didn't do all I could've done" or if I have the BMX and it comes back, will I feel betrayed I did "everything I could" and it still wasn't enough?
Around and around and around I go.0 -
Janet (Batesburg)- First of all, hello! I see you were DX in June of 2015. I'm still in treatment so I have no words of wisdom for what happens "after." I wish I did. I can tell you that I had neoadjuvant chemo followed by UMX and I did not acheive PCR. I am currently in RADS.
Just from reading these boards, I have come to find that there are a lot of TNBC women that did not have PCR and have gone on to live many happy years. Hang on to that hope and keep following up with your doctors. I know...easier said than done! Keep on posting!
Maryann
0 -
Kimberly (KQHill) - Hello! It is nice to meet you! No words of wisdom, just my experience (my really crappy experience!)
The choice between Lumpectomy, UMX or BMX is very personal. I wanted BMX and was authorized by insurance and scheduled for surgery 06/16/16. Then my A-hole employer terminated me on 05/20/16 (my FMLA had run its course.) This then terminated my (and my families) health insurance effective 05/31/16.
Fast forward to 06/01/16...we scrambled and figured out how to get coverage ASAP under my husbands HMO (I had a PPO at half the cost) and get all of the referrals in place (I really hate HMOs!) I got a call from my BS office a few days later...HMO does not want to cover BMX due to being BRCA negative! They will only cover UMX. Foolishly I went ahead with UMX (no one advicated for me, not even myself) and I did not acheive PCR (not even close!)
What I learned the hard way...you can start with a lumpectomy and then move on to UMX or BMX. You can't go backwords. As I sit here with one boob and no hair, I wish I had started with lumpectomy! Lumpectomy was never even a consideration for me personally until after I had UMX and it was too late. Should of, would of, could of.
Even with UMX or BMX it is not a gaurantee that you will not need RADS. I am living proof of that. What happens if you don't achive PCR after neoadjuvant chemo....RADS!
Keep researching and find the best option for you!
Maryann
0 -
Val and everyone else! This SUCKS and I hope someday we will all be able to move on with peace in our hearts!
0 -
Hi Maryann, so nice of you to respond as you did!!! I realize that many may not know of their PCR status given not too long ago many had surgery first and then chemo! But, any more stories of known non-PCR survivors would be wonderful!!
I know every one is different but so good to hear how everyone is doing going forward!
Yes, live in hope and live fully today. Its truly all we've got. We, as TN survivors, get that more than most, I suspect!!!
Cheers to making TODAY fantastic!
Best to you on finishing up your RADS (I had 30 sessions- quite exhausting in their own way) and getting on with the JOYS in life!!!
Janet
0 -
BTW Maryann I love your new profile pic. It's you. We have different looks for what is going on in our lives... I plan to update my pic as well.
0 -
I had DCIS and IDC. Surgery, then chemo. Then a re-excision which got the rest of the DCIS. So does chemo not work on DCIS or am I considered to not have a pcr?
Day 5/30 of rads tomorrow. Decided to drive 4 days this week and spend one night in Seattle. 82 miles each way. :-
0 -
Maryann, I'm so hoping to be ONE AND DONE but I know better. I had weight-loss surgery 2 years ago and planned a full mommy makeover for goal weight yet now I'm fussing about drains, which I've already had before and did just fine. Only one, but still. Heck, I had my WLS in Mexico and went alone, much to my husband's distress and anguish.
Your employer sucks eggs, by the way. That's no way to treat people.0 -
hi KQHill
Welcome to the board. It's a great board. I had a lumpectomy in Dec. I went back and forth about it but after talking to the doctor I decided to do it. I feel happy with my decision. I did AC and Taxol finished that in June and did 4 weeks of radiation in August. The worst week for me was week 3 when my skin started to burn.
I am hoping this is a one time thing but who knows we don't have a crystal ball. You will make the right decision go with your gut is the best advice I can tell you. Good luck
0 -
KQHill I didn't see it mentioned whether you had a BRCA test. Please make sure you do if you haven't. Being positive for BRCA makes the decision for you. BMX is the way to go. My wife had a lumpectomy PRIOR TO BRCA testing. THEN they found out she was BRCA2 positive so they had to do the BMX.
0 -
Welcome KQHILL, sorry you had to find us, but this is the best place to be.
Just came back from my first 'routine' MO appointment. She said no need to see her for six months. No scans unless I have symptoms. I still have tons of therapy to go through due to my stroke, but she finally said I am NED (She says she does not use remission or cancer free, but I can if I want lol to that)
. Based on all the scans I've had to have with the hospital stays of the last 2 months I guess it's a good thing I had them all.
0 -
BIG NEWS TODAY‼️
0 -
Thank you for sharing Cathytoo!!! Great news!!!
0 -
That is awesome Cathytoo!!
0
