TRIPLE POSITIVE GROUP
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Great info everyone, thanks! The military has Fisher houses..a place to stay while being treated...the problem with staying there though is I am going to Ft Sam Houston in San Antonio Texas, and that is where a LOT of wounded warriors go, so space is limited because of course they have priority, as it should be
It'll all work out....I just hate being away for over two weeks! Kinda blows our whole summer vacation this year.
Oh well.
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Jenn: I finished chemo last June and Herceptin end of November and I still have the drippy nose (getting better every week) and runny eyes and my fingernails that were once as strong as rocks are still peeling. My onc feels strongly it is still residual from Taxotere and not Herceptin but I know the Herceptin causes the runnyness too. I thought maybe the Hormone Sucking Pill (Arimides for me) was causing the nail issue but she says nope, it is still the Taxotere (taxotears).. Just know that it will eventually go away.
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Summer in San Antonio? Sounds hot to me! TonLee, you are so great; glad I found this thread. Full of amazing ladies!
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Hi, everyone, I am new here. I posted my experience on the other board but found this TRIPLE POSITIVE GROUP today and would like to hear your comments.
I had simple mastectomy last month. I have been very worried about a missing tumor after surgery.
The biopsy shows two tumors:
A: 1.5cm, behind nipple, ER+, PR+, HER2- (score 2+, FISH negative)
B: 0.8cm, 12 o'clock, ER+, PR+, HER2+ (score 3+)Surgical pathology shows only one tumor, the bigger one behind nipple. The other one is missing and even the clip placed during biopsy is missing too.
According to the surgical pathology report, there are two specimens for the breast:
1. left breast, simple mastectomy (lateral aspect of left breast skin);
2. left breast tissue (re-excision with evaluation of margins).
It seems that my surgeon removed additional tissue after removing the most part of my breast. Has anyone of you had same experience?I have very small breasts and I don't know if this caused difficulty for surgery. My surgeon has 20 years experience. I hope the re-excision is not a problem. What do you think?
All doctors said, most likely, the tumor is not in my body. But seeing that all doctors are saying I have a hard case, I am extremely nervous. I tried to ask if I can have Ultrasound or MRI to make sure no residual breast tissue in my body. No doctors think it will help. Just want to know your comments. Any advice will be highly appreciated.
Also, this missing tumor cause different opinions on my treatment plan.
The first oncologist I saw recommended TCH*6 with H for 1 year. She said even score 2+ is not good and even a small HER2 positive tumor means chemo is needed.
The other oncologist I saw said if the missing HER2 positive is too small to find, she doesn't recommend chemo if the oncotype score for the bigger tumor is low.The third oncologist I saw today said the second opinion pathology review is the same as the original one and he will bring my case to their weekly case study for more discussion before he can recommend a treatment plan. It has been four weeks since my surgery. I think I should start chemo ASAP but there are still no answers to all my questions.
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dou - you shouldn't start chemo until fully healed from surgery. My surgery was May 12 and I started chemo June 9. You are right about that time now and not behind, yet.
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tonlee - below is a link to the hotels that are connected to the San Antonio BC Symposium - maybe you can get a discounted rate. Also another link to the IHG Army hotels for SA.
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All - on the sore/bleeding/runny nose I found things worse during TCH - combination of soft tissue in the nose aggravated by Taxotere, low platelets, and runny nose from both Taxotere and Herceptin. I always carried tissues, but also used Aquaphor in my nose. I had a lot of cracking of the skin on the nostrils, and pretty much a bloody nose every day. It did improve after the end of chemo, and the runny nose continued on Herceptin, but only had the occasional bloody nose. I finished Herceptin in January and the runny nose went away within a couple of months. Hang in there!
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Dou, could the missing tumor be the reincised sample they took for margins, the fact it says re means it was already cut, so that is my take on it, but ask for clarification. They gotta have it somewhere.
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Do we assume if years from now we get cancer again that it is from our original breast cancer. I mean the BC came from nowhere.
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Tonlee
Hope all goes well for you in San Antonio. Im sure it will and you will be pleased you stuck with your original surgeon. I have an appointment in July to discuss a reduction op. I will be having the same guy who has 25yrs experience. I had a lumpectomy and he got clean margins, that in itself was reassuring to me. Don't you think its the emotional toll of all this treatment that is as bad as the physical effects?When I consider some women choose to have breast surgery for cosmetic reasons it kinda amazes me! Any appointment places me back at the clinic in patient mode.
Fellow snifflers: I do hope the nose issues clear up soon for us. Permanent nose blowing not the most attractive look! Having just finished my H year Im praying for an end.....
Liz
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Nose bleeds/runny nose. I had both on chemo/herceptin. My NP remarked that if the nose bleeds didn't stop she would send me to someone to get it cauterized too. I told her I thought it was from Herceptin she said no… then I mentioned it to my onc and before I could say anything else she said "that's from Herceptin. I can do that but we don't know why."
I had some pretty serious nose bleeds. BUT once I was on Herceptin only I only got a few nose bleeds and the drippy nose stopped. I don't have allergies though. I also had chemo in the winter when its dry so that didn't help the nose bleed issue. I did find that putting a light/thin coat of vasoline inside my nose really helped.
Waving to doudoulong. Ideally most people start chemo between 4-8 weeks of surgery.
Kichenella it really depends. I have a friend that got it 2 years later in the other breast but it was a new primary. If it shows up as distant mets then yes they do assume it's our original cancer. Local it can be either.
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I had the bloody, runny nose on Taxol/Herceptin but it has almost completely cleared up now about 5 weeks post Taxol, still on Herceptin. I used nasal saline spray and some nasal saline gel that helped a bit...
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I've been on herceptin only with no runny nose or nose bleeds. Unfortunately, I've had worse side effects like heart issues and am now under the care of a cardio doctor.
Tonlee, I had my exchange on Tuesday, spent the night in the hospital, leaving late afternoon, and went to work on Thursday. I did have a drain for over a week which was bothersome. I drove, although the plastic surgeon said no driving with the drain. No pain meds after leaving the hospital. The only thing that bother me was the implant. The size was bigger than I ask for and the edges of it hurt, and still does. I'm having a fat grafting surgery done sometime this summer and sementry work on the good breast to make it match the somewhat larger tissue expander breast. I'm tempted to remove the implant for a smaller one but hate more surgeries.
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doudoulong, sorry to hear about your dilemma. I'm glad your situation is being discussed further. It's possible that your her2+ tumor was completely taken out at biopsy. It seems that a lot of doctors only consider the final surgical path report. I went to two different centers for the biopsy and surgical so how things were done at one place was different than how it was done at the other. My oncologist only considers the surgical pathology so my treatment and staging is based totally on the surgical path.
It is also possible that in the labs that biopsies are mixed up. I read in the paper that this happens. One woman was told she had cancer, but later discovered her tissue was confused with someone elses and she didn't have cancer. The poor woman had a unneeded mastectomy.
I would definately ask for a second opinion on your original biopsy and surgical biopsy to make sure they are from the same tissue, and to make for sure they got it all.
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Doo...not only do I not know why anyone would want breast surgery, other than for meical reduction, but Idont know why they like tattooes. They hurt like crazy! Bleeding, scabbieness...yuck.
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fluff--you got your tatoos already? Maybe I will forgo that part
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doudoulong - evebarry is correct in saying that it is possible your HER2+ tumor was removed in biopsy. All of my IDC was removed during biopsy. All that remained for surgery was some DCIS. Because of that, my surgical pathology said that there is a conflict between the two reports and the onc should take both biopsy path and surgical path into account.
I ended up with official staging at Stage IIa because one node was positive.
Good luck - I'm sure you'll get everything worked out. Those first few crazy weeks are so hard!0 -
My tumor was excised with clean margins during biopsy also. Path report after mastectomy said evidence of biopsy was there but no sign of anything else. My first biopsy they removed a little lcis tissue.
On a happy front, we have just been approved to adopt a rescue schnoxie...part schnauzer, part dachshund. Might be the cutest dog ever.0 -
Fluff my tit-tatts didn't hurt. Didn't they numb you? Bucky ask for a few shots of lydercaine. If they refuse then demand a few shots of tequila!0
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He used a local, but I am hard to numb. He got to a spot that wasnt numb and I said....Gee that hurts. He asked if it was tolerable and I said sure...then he got to a new spot and it really hurt, so he stopped and injected some more. He said he had to use way more than normal.
I laughed and told him my bil,my dentist, says the same thing. He said I might have told him that before he started. Lol. I definately will on the next batch.
But...a couple margaritas sounds pretty good too. I was thinking I might pop a pain pill or valium, but I kind of like the margarita idea.0 -
Thank you so much, everyone. All your kind words mean a lot to me.
I will call the pathologists myself and hope they are willing to answer some questions from a patient.
Considering my age (38 yrs), isolated tumor cells in my lymph node (only one lymph node was removed and it is negative but ITC identified) and those uncertainties caused by this missing tumor, I'd choose to go with chemo. Hope I am allowed to do so soon.
One oncologist recommended TCH every 3 weeks for 6 cycles with H for one year while the other oncologist recommended ACTH for 20 weeks. He said that ACTH has been used for a longer time but is more harmful to heart. I need to do more research on this. I think this thread is a good place to start. Thank you, all.
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Duo, I am on tx 5/6 TCH with Herceptin for a year. My MO chose this because of the heart issue, as Herceptin has its own heart problems. But do your research and make up your own mind.
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hi ladies
hope everyone is well...
just wanted an opinion. I am meeting with my plastic surgeon in June to discuss my upcoming bmx and surgery date. They said either August or September. I will be having a bmx with lat dorsi flap (from my back) because i have a radiated side ( i have met with 3 PS and all tell me i have to do it this way even tho i am not crazy about the scar on my back)
I have 3 weddings in aug/sept - I know this is silly but i don't want to miss any of them (all family) this shitty disease has already robbed me of so much. Is three weeks enough time to re-coup? will i be able to attend a wedding 3 wks after this surgery?
on another note...a friend of mine (diagnosed last aug) went to see a genetics counsellor. This friend was told (as was I) that we would not be tested for brac1 or 2 b/c we are over 35. The counseller told her that anyone with cancer (any type) under the age of 50 has some sort of genetic abnormality and that they just have not figured out all the mutations yet. Cancer over 50 is more damage of cells which occurs when ppl age. Not sure if i am explaining this properly but the bottom line is that in those of us under 50 with BC we need to be screened for other types of cancers more closely (colon/ovarian/uterine)????? has anyone ever heard this before????? she was recommended to have her ovaries removed even tho her onc told her not necessary
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I was tested from brac 1-2 and I was 40.
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rozem - I was 54 at diagnosis and was BRAC tested. My surgeon declared me a lumpectomy candidate unless I was BRAC positive, then he would have recommended a BMX. I had the test done on the day of dx because I am adopted and have no access to family history. I was negative but elected the BMX anyway.
I had BMX with TE and not a lat/flap but I would say that you would not be ready in 3 weeks to have fun at a wedding. Have you asked your docs what they think? Can you delay the surgery until after the weddings?
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edit to note that here in Canada they don't test for brac1/2 unless you are under 35 - you can get tested but would have to pay for it privately
SpecialK - thanks for the advise on the surgery. They said there is no immediate urgency but I feel better having it sooner than later (for mental piece of mind more than anything) i have 3 wks inbetween events and was hoping i could do it then but i probably wont be properly healed
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Rosem, I am 57 and was BRACA tested. l also think you will probably not be ready to celebrate at three weeks. It was three weeks before I was weaning off the big pain pills, but I had a BMX, so it might be different. About four to five weeks and I started to feel better, and it went fast from there. Give yourself time to heal. good luck,
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Can anybody relate to shoulder pain. Cant sleep for it. Sudden onset with no injury preceeding pain. Using ice pack. So so fed up. Sorry for the 4am vent.
Liz
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I am going to get the BRACA test so that my daughters don't have to have it. It would be much more expensive for them.
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fluffqueen, we want photos of the new puppy!! I hope you are approved for adoption.
I have a question for y'all: did anyone have excessive gas and bowel movements months after chemo? I finished chemo on 12/30/11 and have been on Herceptin since October. One of my worst side effects was gas and diarrhea during chemo (you did NOT want to be in the same room with me! And boy, I was running to the ladies room 7-9 times a day...). Well, now it's back, at least the gas part and frequent bm's. It's becoming quite embarrassing! I had to excuse myself while interviewing a potential employee today to go to the bathroom and fart privately! Its loud, smelly and very embarrassing.
Even writing this is embarrassing, but I'm sure you ladies will understand, not laugh TOO loud
, and hopefully have some good advice for me. My onc had me stop all diary, but it's been 3 weeks with no relief. Help! 0
