Calling all TNs
Comments
-
Can I ask, how many rad treatments did you have? It's still 2 months away for me, but I'm getting a tad nervous.
0 -
triplegirl hope your recovery is smooth. And esp hope your team explains your results and next steps in treatment
Luvmyvizsla I had 30 whole breast rads. It went by quickly as I went back to work 2 weeks into rads. Oh yeah and it seemed like a never ending version of the movie Groundhog Day. I did burn and have skin breakdown under my breast from the skin to skin contact.
0 -
Shopgal2, groundhog day is the perfect explanation for rads. I love it.
0 -
yup. Same stuff different day of the week. Last 2 weeks were tough as I got really tired with just going back to work ft and my skin starting to break down. I am larger breast size and over 40 so age and gravity make the "girls" lay on my ribcage thus the skin to skin contact and breakdown from the burns. Now 4 1/2 months post rads and the skin looks great but def a tougher boob and a lot of radiation fibrosis. Thankfully exercise and now weights help loosen up the stiffness.
0 -
Thanks everyone for your encouragement and help. I am hoping to get my appointment with my oncologist moved up from August but she's out on vacation until next Wednesday. My surgeon is still debating about radiation so not sure about that yet either. I am trying to find the formula for the RCB 0-4 test as my pathologist said if I could find it and send it to him he would do it for me. I won't see the surgeon again for 2 weeks and she didn't want to explain anything other than I wasn't PCR. My surgeon then mentioned the pathologist report said I was 100% P53 and started talking about my ovaries...I was too upset about my breasts so I don't even know what that's about. I already know the most my oncologist will do would be Xeloda and no more chemo. She had told me that a month ago. Any help or more infor from anyone would be helpful as I await info from the drs. I'm calling the nurse tomorrow to see about taking out my drains. The dr. said the nurse would do it. At least that is progress...kind of....
Thanks again for your support....I really don't know what I would do without all of your support and kind words.
Janice
0 -
Triplegirl - I'm sorry to hear you didn't have a PCR, but I wanted to give you a positive thought - I had my surgery before my chemo - so I have no idea if my CA would have responded to the chemo at all. At least you know that you have done everything you can, and the tumor has been removed. As for the P53 - my hysterectomy was the best part of this deal. No more trying to schedule vacations around a period, no more period... it is lovely, I must say!
LoveMyVizsla I had 32 rounds of radiation. 26 whole breast and 6 boosts. I HATED RADIATION! I don't want to scare you and I don't want to be a Debbie downer but I'm being real. My treatment involved having an inch of wet towels placed on my chest, in a freezing cold room, with my hands above my head... and if that isn't enough fun, then my TE started to move which caused issues lining up the machine - not to mention the Sharpie markings I had on my body that my husband had to touch-up every time I showered. And my skin broke down. I bought a supersized package of men's wife-beater t-shirts because I would slather on the lotion to keep the skin moist. The t-shirts protected my clothing from being ruined by the lotion. My larynx burnt, so I couldn't swallow - and when I say I couldn't swallow - it was like the WORST sore throat EVER!! I know everyone is different, but my rads made my chemo look like a walk in the park. My advice to anyone going thru radiation - ask for creams, the bandages and the stuff for your throat. Don't be skimpy with any of it... but make sure to ask or they won't give it to you. With all that said, my rads were two years ago, and treatment has changed significantly in two years, so your experience may be totally different.
Hugs to all! Janet
0 -
POSITIVE RADIATION EXPERIENCE...just read the post above mine which details a horrific experience with radiation treatment. Not to be argumentative or create drama, but what is the purpose to paint such a scary picture that IS NOT THE SAME FOR EVERYONE. Interesting that it begins "don't want to scare you" and then goes on to be REALLY SCARY. IT'S JUST NOT THE RIGHT THING TO DO. I have four more treatments and have had NO SKIN ISSUES. Of course, it's not fun lying on that table every day in an uncomfortable position, but hopefully it will SAVE OUR LIVES. Sorry for the rant, but that post really got under my NOT BURNED SKIN... LOL
0 -
I am sorry I upset you Cathytoo. It was not my intention to hurt anyone or offend anyone. And I thought long and hard before I posted it, but I posted it because I wished that someone, anyone, would have warned me that it isn't all sunshine and roses. I was being honest. And as I said, treatment has changed a lot since my diagnosis. Hope you forgive me and don't think ill of me.
~Janet
0 -
Hi all, I've been waiting, not so patiently, for my final pathology report, and of course I missed my surgeons call today. She left me a confusing message. First she said "good news, all clear", then she said "little, if any cancer left, nothing to worry about, overall great results". So I'm guessing that I didn't get a pcr. Very confused by the "little, if any" part, it's either there or it's not.It was too late to call the office to clarify, so I'll just drive myself crazy til morning.
0 -
LifeAloft, I'd take the little if any, because that means they were able to cut what they saw out. Not everyone gets PCR that's what rads are for or hormone therapy.
Rads, are now down to 20 minutes in and out. No more bolus. My skin does not look great but the good thing is it feels alright. I use the creams and cabbage leaves, but other than my sometimes emotional mental state, I can now say i'm in a good rythem and it will soon be over before I know it.
0 -
Regarding Radiation experiences: As is frequently said, everyone is different. My radiation was no walk in the park, as some ladies have labeled their experience. Nor was mine as bad as Janet's. But I was in bad enough shape for the RO to give me a week off near the end of the 6 weeks. I believe we are better served when we are well informed. All experiences are real and we should support everyone going thru the treatment.
Best wishes to all, Jan
0 -
Hey all, I'm a n00b who has lurked a bit but never posted... until today! I'm feeling pretty low, and if anyone can tell me "Been there! Done that!" it would mean the world to me!
I was diagnosed with triple negative Stage 3a (grade 3) breast cancer in March (1 tumor on right side, less than 1cm, but four internal mammary nodes lit up during my PET). My team recommended neo-adj. chemo and I jumped to get started asap after reading how quickly grade 3 can grow. I finished AC+T at end of June. Was so excited, my team has been so wonderful at Virginia Mason, helped me thru SE issues and I was pumped to get this BLASTED PIECE OF gǒushǐ OUT!!
Well I had my follow-up PET this past Monday and it wasn't very good. The nodes look for the most part unchanged (my tumor never appeared on the PET from the beginning cause it's small). My team has some members on vacay ("it's summer!") and they want to biopsy one of the nodes this Friday so I'm "ON HOLD" with a plan of action until early next week. (Going crazy waiting as well...)
My MO has already mentioned Xeloda, which gave me some hope as I've heard some good things about it. But I'm scared. Plus, I'm dealing with pain in the node area as well. I'd been able to manage with ibuprofen alone but now I'm having some break-thru pain. #$%%$#* cancer!!!
Triplegirl - Have you had any genetic testing done? I'm going to have to have my ovaries out at some point. I'm BRIP1 positive, which means I'm at a high risk for ovarian cancer as well.
I know how you feel - it's enough dealing with the breast cancer! Jeez! Lemme catch my breath here!0 -
I was diagnosed 2 weeks ago with a triple negative breast cancer that was picked up as a non palpable lump on mammogram that I have every year. It was 11 mm completely excised with clear margins and sentinel node biopsy clear. Two nodes were removed and were clear. I am awaiting chemo and radio and have been told that I have a 90% chance of non reoccurance. I should be thanking my lucky stars that it was picked up so early but instead all I do is cry and read all I can about the poor prognosis of triple negatives. I need to stop this and stop making my families life a misery but I just don't know how! Its like I'm paralysed with fear. Does anyone have any suggestions about how I can learn to live with this fear because its affecting everyone in my life now and I hate it! So very scared!!!!!!! Also has anyone up to date info about Triple negs treatment
0 -
TNpotato...I hear you. TN is a rough ride. My experience is a bit different than yours. Hopefully, you will hear from other women on this great site who can relate to your situation and offer support. For the rest of us...justknow that we all care and wish you the best.
0 -
Kathseward, you will feel more in control once you have a plan of action. I believe AC+T is the standard of care for TN, plus radiation.
0 -
Welcome kathseward! You will find a lot of good reliable info on our tn board. There is also the triple negative breast cancer foundation website that has info about tn. i would stay off of dr Google about tn. Been there and worried myself into a spin after doing that last year.
As for the fear factor just take it one day at a time, one treatment at a time. You will get to the other side. There are a lot of long term survivors and they give us hope and comfort. We all deal with our fear but we live and go on thru our daily lives. I am 5 months past my final treatments and I have the same reoccurrence fear I had a year ago. But I don't let it take over. Last year cancer was the first and last thing I thought about every day. Today I can say that I think about it during the day but not all the time. And some days not at all. Took me some time to get here but the journey made me stronger. And kinder, more patient, and wiser. In the beginning I couldn't stop thinking about cancer and was not sleeping. I finally broke down and talked to my family doc who prescribed Xanax it really helped stop me stressing and relax. It stopped my spinning thoughts. Today I work out 2x a week, eat clean, and have lost 60 lbs since completing chemo in December last year. Same me, different me, but better. Like a lot of us.
Know that we are all here for you. Hugs.
0 -
Cathytoo - Thanks!
I know I'll be better once I have a new plan, but I was so expecting a great outcome... It was a real sucker punch that the AC+T didn't do what I'd hoped! Kathyseward - I hear you about living with the fear! It can be overwhelming. Have you talked to your doctor about any anti-anxiety meds? Like Xanax? They started throwing prescriptions at me really fast the first few weeks when I said I was having trouble sleeping/focusing on anything else by BC!
I actually found that for me, meditation and guided imagery/positive affirmations CDs help me "rein in" my brain when I feel overwhelmed better than meds (YMMV). I have asthma as well so the meditation helps me to keep from having stress induced attacks, gets my breathing back on track. Someone, somewhere on this site recommended "Meditation to Help You Fight Cancer" by Belleruth Naparstek (Amazon has it as a CD) and I fall asleep listening to that almost daily, it's a very positive way to gain control of your mind!
My sister gave me a meditation CD when I was first diagnosed- "Guided Meditations for Calmness, Awareness & Love" by Bodhipaksa (Amazon too) - that I listen to almost every night too!
And big hugs because I remember those first few weeks - hang in there!
Edited to add: Kathyseward - one of the reasons why I was so upset about the AC+T for me is that for many, many TN patients it is VERY effective! I think my MO was really as surprised/disappointed as I was.
0 -
TNpotato...I forgot to mention to you that I know 12 TN women. They are all ages, all different years from their last treatment but ALL STILL HERE!!! One 15 years past her initial diagnosis. TN has a worse prognosis than ER+, but the majority of women go on to live long csncer free lives. Hang in there and pop in here whenever you need a boost
0 -
Hi I was DX in March '16 TNBC in my right breast with nodes.i am 52 years old I went through 12 weeks of taxol with every 3rd week a clinical trial drug called PEMBROmiacin. I am now on a two week break and getting ready to start my second round of chemo (AC) 8 weeks every other week. then surgery, then radiation. My process seems to be the opposite of everyone else. Thanks for starting this thread!
Jac
0 -
Hi Janet,
Thanks for the encouragement. It's the waiting and not knowing that's the worst. I did have a great day yesterday as I went in and they removed the remaining two drains. So nice not to have them anymore. I did find the formula for the RCB index and emailed that to my pathologist so I hopeful I will have that information soon. I'm expecting I may be a RCB-2 but hoping that maybe I would be a RCB-1....gotta have some hope. I so appreciate everyone on here for the encouragement and support. I go back to work on August 8th which is 4 weeks out from surgery. Seems a little soon to go from no activity to full on work. Oh well.....onward and upward.
Janice:)
0 -
Well...this summer I am convinced...at least here in Alabama...that none of us has to worry about this cancer stuff any more because I think we're all going to spontaneously combust anyway! Dang it's hot!
0 -
Hi TNPotato,
I lived in Mukilteo for 12 years and moved down to the sun...lol..4 years ago. I know Kirkland well as I worked in Bellevue for many years. I am BRCA negative so I was relieved but then this P53 at 100% and the ovaries talk. I asked to table that as I was only 4 days out from my surgery last week. I need some time to mentally process this and a little more information. Hang in there as best you can....I'm trying but it's soooo hard with Triple Negative. Yes vacations....my onc isn't back until next Tuesday and I'm not even sure she'll bump up my appt.
Janice
0 -
triplegirl - from my understanding, there are two types of p53. The tp53 amplification can be a genomic alteration in the tumor itself. You can also have a genetic (as in inherited, not tumor but in your Dna) condition called li frameau (I'm sure I'm not spelling it correctly) that is tied to p53. Do you know which your dr is referencing?
I'm curious because I didn't have a great response to chemo either (shrank only from 3.5 to 3.2). I've had foundation one test the tumor, and there were mutations found - tp53, myc, and fh.
My genetic profiling did not show anything, so I don't carry any genes that make me predisposed to cancer (including p53).
Let us know what you find out, and what your doctor says about this. I haven't received a whole lot of information from my doctor about this, so I'd love to know what your MO says.
Hang in there😘
0 -
Hi Titan,
Your treatment plan sounds like mine except I was diagnosed last year at 52. Just finished all treatment on July 8 and am looking forward to my 53rd bday on Aug 5th
My particulars are listed below my signature in this post.
This has been such an emotional challenge for me but I am hopeful for the future. Hang in there everyone
0 -
Ladies, I'm not Triple Negative, but I'm posting this to see if anyone of you have heard about this? This is from Agendia, the makers of mammoprint, and says:
In the Luminal A-type group (n = 90; including seven HER2-positive patients and eight triple-negative patients by IHC/FISH), the 5-year DMFS rate was 93 %. The pCR rate provided no prognostic information, suggesting these patients may not benefit from chemotherapy
If anyone has more knowledge of this and it's implications, Triple negatives can be Luminal As? I'd really love to know it.
0 -
Cathytoo - Thanks! I will do that!
Today has been a better day, got outside in the sun. That really helps me...jac13 - I haven't heard of PEMBROmiacin before. Is it a new alternative to Adriamycin?
Triplegirl - I totally get the 'move to sun'! I lived in Rochester, NY for quite awhile so the lack of sun most of the year doesn't bother me as much as it used to. And I love the summertime the most around here. You're gonna miss Seafair tho'! It's just around the bend!
Shopgal2 - "Last year cancer was the first and last thing I thought about every day. Today I can say that I think about it during the day but not all the time. And some days not at all." - I am really looking forward to that! May it be sometime soon for ALL of us!!
ALHusband - LMAO! Thank you for that smile, much needed!
My sis-in-law gave up on the heat, drove from San Antonio to Boston to stay with family there. Too hot for a transplanted New Englander! And to all who gave hope above that I didn't call out- thank you! I can't put in words how much it helps to hear other people say "we can beat this! I did!" Hugs to all!
0 -
TNpotato, it was a balmy 77* down on Whidbey Island today. Took the dog there to the 40 acre dog park.
Today marks my first week post chemo, yay!! My sinuses are already getting better.
0 -
LoveMyVizsla - It made it up to a scorching 81 here today! lol
And CONGRATS ON FINISHING CHEMO!!! WOOHOO!!
)
0 -
Lisey - I have no idea what most of that link is even talking about! lol I'll have to start reading...
0 -
RADIATION COUNT DOWN. THREE MORE.
0
