TRIPLE POSITIVE GROUP
Comments
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rozem one of my neighbors in the building I live in (high-rise) just had her exchange surgery Friday. We had the same triple negative diagnosis although she had nodes and needed to do rads too. We have the same team (BS, PS and onc.) She seems to be doing rather well. Our PS made her wait extra time. He also does fat transfer. I have read that fat transfer not only helps reduce step off but also reduces capsular contraction with RADs patients. I wish I saved the link to the study but I didn't.
While there can be complications with RADS (often refereed to in the literature as failure) many women can still have good outcomes. There might be a few more surgeries involved. I had no rads and even I needed a revision.
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Roze,
I had Rads LOTS of it...and I have a TE and will get an exchange this summer. My skin is tighter on that side, but overall it looks just as good as what I'm seeing on the picture site for women with no rads. Of course I don't know how my radiated skin will respond when it is cut into for exchange....
My PS said 4 in 10 women with rads have some sort of complication with reconstruction, from slow healing to actually losing the implant, but those statistics are for women who had a TE placed BEFORE rads. So I wouldn't worry about it. Your chances of having complications go down further if you wait to do reconstruction after rads.
Rads "can" complicate things, but it is not a certainty.
Your PS will be able to give you recommendations based on his/her experience and abilities.
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Jennt28 - Here are my suggestions for skin care during rads:
My appt was first thing in the morning:
-Aloe Vera 100% Gel 6 oz Gel by Fruit of the Earth (applied directly after treatment) from amazon
-Miaderm (applied 2-4 hours later)
-Faulding Essentials Vitamin E Cream 75g (from Australia) (applied 4-6 hours later)
-100% Pure Emu Oil (4oz) by Progressive Emu (applied 6-10pm) from amazon
Aquaphor Healing Ointment by Eucerin (Walgreens or CVS) (applied before bed)
(Rub the Aquaphor ointment vigorously between your palms to soften it up before applying)
-Basis Sensitive Skin Bar (Walgreens or CVS) (used for washing before treatment, rinse well, protecting breast from direct shower spray)I wore a very soft lightweight cotton tank top from Target each day under my bra. If you have 'saggy' breasts wrap the tank top all the way over and under the breasts so there is no skin on skin contact where the breast ‘hangs down'. the tank should also came all the way up to the base of the armpit area. I also bought a bra that was larger and looser than normal.
I used a VERY generous amount of lotion/oil/cream, smeared and gooped it all over the breast, underneath and under the armpit all the way to the back. Especially made sure the nipple area was well coated. The cotton tank top absorbed the extra so it didn't get on my bra.
I would also suggest taking a picture of your fields when they draw on you so you know where to goop and make sure you cover all the areas.It's a bit over the top but it kept me busy and I felt like I was doing something to help myself and my skin did alright. Hope that is helpful!
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Omaz, THANKS!!!!!
Jenn0 -
omaz, thank you so much for your suggestions. i will be attempting to do everything you listed.0
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yaya- You have a 3 or 4 more boosts? Or is it less than that? I was in my second week of rads this time last year.0
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omaz, i have four more boosts. hopefully, my RO will let me continue next monday. i'm supposed to see her tomorrow and i'm so scared that she will insist i start again when i sees me. i'm still too raw. i cringe just thinking about another tx. one of the boosts goes right on the rawest part. ugh.
do you have any idea why the txs are supposed to be consecutive? i've done google searches and i can't find out the purpose of that. i figured if anyone would know, you would!
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yaya - I am sorry you are so sore - ouch!!! I don't know why. If I had to guess I would say that they don't want to give any lurking cancer cells extra time to recover before hitting them again with the rads. I have read that there are special cremes that the ROs can prescribe to help the skin, maybe ask the RO for one of those.0
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Yaya,
They like to keep txs consecutive to perpetuate the hostile environment. Meaning, if they wait the cancer cells have time to repair themselves between zaps.
Trust me sister. I ASKED. lol I HATED Rads...every single second of it.
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Hi ladies sorry I have not been in touch. I've just lived a through a nightmare, only the nightmare was reality, I went in on jan 9th for surgery diep.
Planned to leave on 13th.....no pulse on Doppler for new breast, back to surgery for 2.5hrs to do it again. Planned to leave on 17th, well guess what, another complication. Back to surgery.
2.5 hr surgery done......then on 18th, yes the next day it messed up again. S I went into surgery for the 4th time. This time, my flap had died, and they had a back up up plan and gave me a one stage implant.
It's not what I went into for, but at least I got my boob back. I just hope this doesn't fail too. I am exhausted, I know nothi about implants, I did research on diep only. I am still in hospital and will leave today. Yay0 -
Sorry to hear about your surgery troubles. You sure went through alot! I would have given up after the 2nd surgery. Wishing you a pain-free recovery.
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redninrah - oh no!!! What an ordeal for you, so sorry! Are you feeling ok having had that much surgery, and do you have some help once you get home?
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WOW red!!! Through the ringer!! Take care and heal up quick!!0
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Red: So sorry to hear about all of this. Get well soon!
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red: hang in there - get better soon -praying no more surgeries
question to all the triples out there - what does it mean to be +++ her 2??? strongly her2? does that mean herceptin works better?
in all of this cancer craziness i never had the guts to look at my full path report - i know, stupid but thats the way i handled it in the beginning
thanks for your help
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rozem - My understanding is that HER2+ is HER2+, herceptin works for all levels of positivity.0
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OMG Red what an ordeal. I have implants and doing just fine. The do require a little more maintenance that flap surgery but not too bad.
Rozem I too hear that if you are HER2+ it doesn't matter how many +. The possibility is equal. I think it's a question if you are unequivocal.
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Rozem: My onc told me the same thing. Her-2+ is HER-2+. She doesn't categorize HER-2+...we are all the same in her estimation.
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thanks for the reply
I NEED AN OPINION FROM YOU 3PLUS VERY KNOWLEDGEABLE LADIES
i had neo adj chemo - surgery was on tues. healing up nicely from the lump (still taking these puppies off at a later date)
so the surgeon said the 4 SN taken were clear - now i know sometimes when they do pathology they come back with micro mets.
question: if they are clear he does not want to take anymore - if they have micro mets he will take all
i hear there is a 5-10% false negative rate - so 5-10% of the time even when the SNB is clear there are infected nodes in the axilla
I only had a 3% chance of getting this disease so i always seem to be on the shitty end of the stats so SHOULD I INSIST AND HAVE THEM ALL REMOVED????
i know the risky of LE but omg i can't stand having the thought of micro mets in the other lymphs
HELp!!!! BTW no evidence of tumor when he examined the tissue so heres praying its all gone
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Rozem there are no guarantees here. I had surgery first. They took 10 nodes on my left and they were all clear… and I now have mild LE. My BS thought for sure I would have micromets. Based on the size of my tumor I believe I would have an 80% of invasion. Am I mad that my nodes were taken, no. This isn't a perfect science. I'm pretty sure though if my nodes weren't removed I would have rads. But this was because of the size of my tumor (5.5cm invasive but 6.5cm including DCIS)
My breast cancer risk with my risk factors and age was less than 2%
Now in your case there is a good chance that even if it was in your nodes chemo got it. Also I assume you will be doing some kind of hormone therapy so again even if there were micromets, and chemo didn't get it you have that… and I assume you are still doing Herceptin for a full year. You are getting a lot of aggressive treatment. I think the odds are in your favor. I would discuss this with your onc too. Doctors don't like to over-treat
Not sure if I was one of the knowledgeable 3.
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No way would I let them rip out any more nodes for MICRO mets. No way in he--.
I'd ask for rads.
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TonLee the issue is she doen't have micromets. She's just worried that they made a mistake. I doubt they will do rads unless there is an indication of micromets in her case.
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LAGO - you are correct, there are no micro mets confirmed until they do the final pathology
since i am done chemo my concern is leaving anything behind....onc says the odds are extremely low b/c i had such a great response to chemo
i just sent hillck a private message and she did neo and her surgeon also only took the 4 sentinal nodes
how bad is LE? is it that bad????
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I'm not one of the knowledgeable but I had lumpectomy in October, re-excision for clear margins in November and just had round #3 of TCH today. I will be getting rads. My BS said no matter what the nodes showed I would get chemo and rads because of the HER2+ and since I didn't have a mastectomy. Of course I will also continue Herceptin for the year and hormone therapy for 5 years. I think that should zap all the strays...I Hope!
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My LE isn't that bad but I do wear my sleeve daily. I caught it early. Not the end of the world but I have had to make little changes. I wear rubber gloves when doing dishes and cleaning, etc. Not the end of the world but I wish I didn't have it. I have had PT a few times and I do some light exercises for it. Some women have real trouble with it though.
I think you should see how the pathology comes out first. Your onc makes a lot of sense to me.
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Lago,
Yeah I got her nodes were clear in surgery, but not yet cleared in the lab. Which means if there is anything there it is likely micro, or ITC.
Roze,
That's something you have to research and decide for yourself. I'm very active and didn't want to risk it. The newest studies show Rads is just as effective as removal for nodes without gross disease. There is roughly a 5% lifetime risk of LE from rads...and depending on how far you go out, the research I found said up to 50% of women have it 10 years out with axilla removal.
In my family I have an aunt who had a MX for micro calcifications with full axilla dissection (all clear) a month or so before me. Her arm is over double its original size, she was stage 1 or 2 LE before she even left the hospital...so that really colored my perspective. She's had nothing but problems since...and it has really affected her quality of life.
Then there are women who have no problems.
It's a personal decision.
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My nodes were clear, but I had surgery, chemo, rads and am on an AI. Even if I had had chemo first, I would have had rads. I was quite lucky with rads--I only had 19 rounds, including boosts. I could have done the partial breast irradiation, but there were no long term studies which included the HER2.
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thanks ladies!
just to clarify - when i said KNOWLEDGEABLE 3 - i meant all the triple postive ladies on this thread!
i think i will wait for pathology and decide how to proceed
i am getting the rads so i will MAKE THEM do the axilla aswell - thanks for the suggestion TonLee
not only do you have to deal with this AWFUL disease but all these decisions that you have to make
CRAZY
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Saw the Onc for Herceptin today...last one is March 20...three to go! Not sure whether to be happy or scared.
The saw the PS....He is very happy with his work. I will get tattooed on February 7, and then a month after that nips and fat grafting/lipo. Woo Hoo! I will probably wait for that until after my last herceptin and then have him deport me.
I told him I thought I had capsular contracture on the right side because sometimes the pec muscle tightens or goes crazy. He said it is the muscle, not the capsule. Capsule feels great. So I have to work on pec relaxation exercises. LOL That would be interesting to tell a trainer.
Lago...I forgot to tell you...he LOVED his statue. Said he wants to put it at the reception desk, but Sherry told him it would freak out the little old ladies that come in. So he has it prominently displayed in his office.
March is going to be a big month!!!!
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Ladies I need some help. I just got out of hospital yesterday with having a failed flap and now a tissue expander implant - one step one. I have no clue. What to expect, I couldn't sleep last might, m chest hurt so bad, I've been in tears all last night. I Don't know if there is a forum just for. Ppl. Like me, I can't find it " I always get help and advice from you ladies, I'm already upset that I didn't have diep but I'm home with this thing in my best that hurts when I lie down.
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