TRIPLE POSITIVE GROUP
Comments
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Lago, I remember you mentioned you would have a colonscopy. I will have one in Sep this year too. Could you still take pills for BC when we suppose to take the strong laxative? what did your doctor say? I am wondering who I should call to find out, the surgeon or the oncologist. Thank you!
TonLee, you are right. I do not have period when I am on Tamoxifen.
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Tonlee - I was measured and fitted for a sleeve and glove last year when I was flying to China. I have (and had) no signs of LE, but the physiatrist that my BS works with told me that anyone with a risk of LE (I think those of us who had AND are always at risk of developing it at some point) should be compressed on long flights or long car trips.
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I had my colonoscopy on the 16th. I took my Anastrozole, Diuretic and supplements in the morning with a tiny sip of water. This was all OKed by before hand by the NP. They knew exactly which drugs/supplements I took.
For my exchange surgery I did not take my supplements that morning. Just the Anastrozole and Diuretic.
Tonlee if you can afford it you can purchase it on your own. Your LE PT should have the measurements and recommendations for which brand to purchase. This site seems to have specials all the time: linky (Guantlets are considerably less expensive than gloves)
Also lymphadivas sell seconds at half the price. I can't wear their products because I need a long sleeve: http://lymphedivas.com/divalicious-seconds/ (if they have your size you could actually get a sleeve with guantlet for as low as $50 total. Not a bad idea if you just need it for flying.)
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TonLee,
The DME supplier I use told me if the insurance wouldn't cover things they would give me the UCR rate that they use for the insurance companies. I cant believe they billed the ins. co. almost $300 for the sleeve/gauntlet but I was told it would be $44 if it wasnt covered. No wonder insurance is out of control....
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sewingnut they are that expensive depending on what you get. My medi sleeve and glove full price for just one set is $220 but I need for both arms so that would be $440.
Purchasing from that site I first posted it's still $352 for sleeves/gloves for both arms!
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Thanks for the link....I will try to work it out through my insurance, but if it doesn't, I'll just order one.
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i'm trying to be positive and work through all this with my spiritual beliefs, but i just need to say that i'm scared and confused. my dx was may 23 ... it will be almost 2 months before i start treatment. TWO labs have tested me positive for HER2. one lab is in califironia (clarient diagnostic) and the other locally. and NOW my onc wants to send tissue to ANOTHER lab for more testing? what bothers me the most is that it seems like two more weeks is excessive. i guess overall, i'm just scared and i hate waiting again for path reports.
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TonLee- If you haven't had any problems with LE, but are concerned with flying....another option is to use ace bandages for compression during the flight. It isn't a great solution if your needing a sleeve for long term use but it's an easy $10 solution for short periods of time (like during a flight).
YaYa5- Two different labs with HER2 positive results and she wants to do another test? You and I have the exact same DX, and I only had one test for HER2 (at my initial biopsy) with the local lab. When it came back positive, my onc. did not question it. Have you asked your onc. why she is doubting the results from the other 2 labs?
I do know there are 3 different techniques. The IHC and FISH are the two different tests most commonly used. The 3rd test was just FDA approved on June 14th and it is called "Dual ISH". It is suppossed to be very accurate, but it is so new that most labs will not have the equipment to perform Dual ISH. They anticipate it will be a few years before it becomes the standard. Is your onc. wanting to run this new Dual ISH test?
I can see why you are anxious to get on with your treatment. It is so hard just waiting and waiting for test results. Keep us posted.
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christean, i think because my tumor was so small and i had no lymp node involvement, that he wants to be sure that i should do the chemo/herceptin. he said this test would be the 'tie-breaker,' because i have 3 good aspects about my cancer (small, estrogen positive, no lymph nodes) and 3 bad aspects (it's grade 3, her2 positive, and the growth rate is very fast). whatever. i just feel like i'm wasting valuable time. this will be THREE tests on this tumor and i have no idea what's going to happen. i'll be glad to get the PT and heart echo done, though, but it's still another wait. and THANK YOU so much for responding!0
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YaYa5- I've been following you closely because your diagnosis matched mine almost exactly. My tumor size was 1.7cm. Your last post confused me a bit and so I looked at your profile and saw that your tumor size was 2.0-2.9 cm in size. Is this correct? If your tumor size is really 2.0-2.9cm, from the research I have done you would not be stage1....you would be a stage IIA. I went to www.cancer.gov to double check. Did your onc. tell you that you were stage 1? I don't know if this makes a difference or not in your treatment plan but it has really confused me. With a diagnosis so similar to mine, I am not sure why your onc. is recommending treatment that is so different? My onc. strongly recommended chemo/herceptin and never questioned my HER 2+ status. Do you think it was because I am so young? I am just not sure....????
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christean, my MRI stated that the tumor was 2.5 cm, but my oncologist told me yesterday that it was 1 cm. from everything i've read, being HER2+ is the key to chemo/herceptin. i don't think it has anything to do with age. i'm not sure it has much to do with the size either, but i'm really new so all my thoughts/ideas need to be taken with a box of salt!! i'm fairly certain that with the grade 3 and the her2+ we would definitely be recommended for chemo.. again, just what i think from what i've read. when do you start treatment?
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Yaya5, request a copy of your pathology report. You will really get alot of info. from that. You may have to go to Medical Records and sign a release of info. form in order for them to give you a copy...but I think it is very beneficial. Just wondering....why did you have an MRI? I did not have an MRI & just wondering why??? There seems to be so many differences in our treatment which is surprising/concerning for such a similar diagnosis.
I started chemo on June 16th. I enrolled in a clinical trial. My chemo regimen is Taxotere/Carboplatin/herceptin. I get TCH every 3 weeks for 6 treatments and Herceptin weekly for 18 treatments. When this is finished I will have a 6 week waiting period and then I will take lapatanib/tamoixfen. Lapatanib will be for 28 weeks and tamoxifen for 5 years. My next big round of TCH is on July 7th which will be my #2 dose.
My understanding is exactly what yours is. HER2+ automatically = chemo.
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Yaya and Christean My tumor was 1.2 cm, grade 3 with no lymph node involvement and there was never any doubt that I would have chemo because of the HER2+ status. If I remember correctly the cutoff for "small" tumors is 1 cm and they often recommend TCH even when HER2+ tumors are smaller than 1 cm now. I remember saying to my MO, "but why would I need chemo if it's not in my lymph nodes?" Her answer was sobering and she explained that in HER2+ tumors, cells seem to sometimes break away and travel through the bloodstream in some people which is why we are at high risk. Chemo is therefore very important as extra insurance for us (at least that's how I'm looking at it).0
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DragonFly: I got the same lecture from my BS and oncologist. HER-2+ means automatically chemo regardless of the tumor size. My tumor was biopsied and tested for the HER-2+ both after the initial biopsy and again with the tumor removal.
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This is my first post and I am so thankful that I found this forum. I was diagnosed with IDC stage II BC HER2 + ,5cm tumor ,1 year ago. Had 8 rounds of Chemo, double MX with tissue expanders and 28 lymph nodes removed all were negative. No RX , started on Tamoxifen in January and have almost completed my 1 year of Herceptin. Was feeling good until my PS felt a small lump under scar in breast that had the cancer. A ultrasound was done and they think it may be scar tissue but not possitive, will see my surgeon in 2 weeks to see if he wants to biopsy. Had no idea that a reacurrance could happen after a mx but now know it is possible. During my treatments and surgeries this past year I have been very possitive and rarely emotional. Its funny now that all that is over I am just now feeling anxious about a possible reacurrance and it is just hitting me that this will be a lifelong journey. I would love to hear from others with HER2 + and see how they are doing.. Also the tamoxifin has caused me to put on about 10 lbs that I can not seem to get off, any suggestions on getting back in shape ?
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Gammyofpax, I am so glad that you found this forum as well. There is such fabulous support and info. here. You have really been through alot this last year. Is your lump directly over a scar? I will be hoping the best for you. Is 2 weeks the soonest you could get in to see your GS? That just seems like such a long time to wait.
DId you have a simple MX or did you have skin/nipple/tissue sparing technique? It is a little disheartening for all of us who have had doubleMX to realize that breast cancer can return even after a MX. The chances are small, but it is impossible to remove every single breast tissue cell. Even one cell can change to cancer. But the risks of recurrance with a BMX are so small that I am hoping that what you are feeling is just scar tissue, especially if it is directly over your scar.
Keep thinking positive thoughts....and you are right this is part of a lifelong journey. Being diagnosed with BC is the end of life as we knew it before diagnosis.
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Yaya- my understanding what that your onc was sending the sample for oncotype DX testing to see if by some chance you got a low score. I didn't think he was questioning the HER2+ result. I can't remember, did you already have a lumpectomy? They should know the exact size from that. I agree that you should get a copy of your path report, that will tell you a lot. It's hard. I had almost 5 weeks between diagnosis and surgery. Not because of me but just getting everything sorted out time went by. It was another month after surgery that I started chemo because I got an infection and had to do antibiotics. ((((hugs to you during this difficult time))))
Christean - Hope you are faring alright after chemo 1.
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gammyofpax, i think the waiting is the worst part at this point. i agree with christean, though, that's it's hopefully just scar tissue. please let us know what you find out, ok? we're all in this together
christean, i was told to have the MRI so they could be certain i didn't have BC in the other breast and for a basis for the MRIs i will have every year now. i do have a copy of two path reports: the biopsy report and the local report from surgery. however, i had no clue that they had sent another one out to california until i got a letter today from the california lab. i called for a copy, but i knew they wouldn't send it to me and i was right.
i don't know how old you are, but i'm sorry you're going through this. i'm 65, and i honestly believe that's a positive for me. how old are you? you're right that we have the exact same dx, so i think we have a lot in common (other than the age, of course! lol) i'm happy for you that you have one tx behind you. your tx regime is exactly what mine will be (depending on the oncotype results) except that i didn't have a MX and i knew that radiation would be a given no matter what. i'm too old for reconstruction and frankly, too old to deal with a MX unless it would greatly improve my recurrance odds. ugh. it's all so complicated, isn't it? let's follow each other along this journey. connie
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omaz, yes, you're right about why my onc wanted to have the oncotype report, but from everything i've been reading, my her2 positive means it's somewhat a waste of time. yes, i've already had the lumpectomy and i changed my signature because i was going by the radiologist's report from the MRI. my oncologist told me the size yesterday. it's all confusing. i also had a high score on the ki-67 (31%) which he said was another negative for me. i'm certainly hoping i'll still get a low score from the oncotype, but i'm not very hopeful. do you think there's a chance??? (FISH was 6.6)
thank you again so very much for always responding to my posts. it helps so much.
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Yaya5, I am 38-will be 39 in July. I never expected to be in this situation...but here I am ...and I am greatful for all of the good things in my life. I don't think your oncotype score really matters at this point. I think it is irrelevant considering that you are HER2+. I would be hesistant to make a treatment plan based on your oncotype score. I am not really sure how accurate oncotype scorinig is. It almost feels like oncotype is gambling on a statistic. The statistics have not been real good to me so far. I was low risk for BC to begin with...but here I am...so I am not trusting percentages and statistics anymore. My ki-67 = 34% , ER+ =74%, PR+= 63% I see you changed your signature. Now it says that your are ER+/PR-. Did your PR status change as well?
My path report states that the tumor was 0.5cm from deep margins. Is this a standard measurement for clean margins? Does anyone know many cm. or mm. they need to determine clean margins? 0.5 cm. just doesn't seem like much of a margin to me. 0.5cm seems awfully close. Maybe I am just paranoid.
Thanks for everyones help!
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YaYa my tumor including the invasive part was 6.5cm and no node involvement and I was highly positive for HER2+. There are plenty of HER2+ tumors, even big ones that don't go to the nodes.
I could understand if your tumor grade was 1 that maybe she was concerned about the accuracy of the test. Maybe it keeps coming back unequivocal?
I too had 6 rounds of THC and still doing my full year of herceptin as well as 5 years of Anastrozole (generic Arimidex).
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gammyofpax Just talked someone off the cliff earlier this week who also had something found on the scar. It could be nothing. Worst case scenario it is bc and they have to remove it and do some radiation. Local recurrence is not mets!! Finding a local recurrence on the scar is the most common. They treat you and you are back on your way again.0 -
Something to keep in mind...each time they send a "sample" out for more testing, they are slicing a thin sliver of your tumor from surgery off. There is only so much to be sliced. Mine has been sliced several times now to confirm dubious pathology results.
Someday, there will come along a new test...perhaps a gene test, a bacteria test...who knows. If there is nothing left to slice, or not enough..you won't know if the new treatment works for you or not.
This issue came up with me being in a clinical trial. They had a stack of papers about 6 inches thick, but I read all of it. One set of papers gave them the right to go back to my samples as much as they wanted. I did not allow this, and was actually surprised when I gave the onc my reasoning. He supported me wholeheartedly.
So, I agree we need to get our pathology right, but once established....guard those cells!!0 -
geewhiz - Good for you that you read everything and caught that!!0
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christean, i changed my signature because even though my path report stated i was positive for PR, my oncologist considers it negative because the number is so low - 2%. i thought positive was positive, so i put positive, but i changed it after i met with the oncologist. it's getting more confusing every single day! have a wonderful day.0
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yaya - I think one of the things I have learned through all the treatments is how individual we all are with this. How we react to the diagnosis, medications, tests, appointments, treatments, surgery - everything is different for everybody. And, we go through many of the treatments without really knowing how effective they are - it's not like blood pressure meds where you can measure blood pressure and know the med is working! Plus the doctors all have such different approaches to everything with many of the treatment decisions left up to us. And yet at the same time we are all the same - struggling with this blasted disease. I keep a small sized 'journal/notebook' of things, comments from doctors, my thoughts, questions, research things, appointment cards. I find myself looking in there when I can't remember something. Take care - one step at a time. If your onc center offers services like massages or reflexology I would suggest taking advantage of it - some extra care helped me.
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Thanks for all the well wishes in finishing #6!! It was anti-climatic thankfully!!! Going to take a little celebratory trip with my DH before solo herceptin-so need it! Will see my onc every 6 weeks while on herceptin. Anybody else see their onc while on herceptin only????
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I'm seeing my onc in a week. I've been on herceptin only for 6 months now. Haven't seen my onc since my last chemo in January.
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I see my onc every 6 months and my BS every 6 months alternating. I think after this first year post surgery I will graduate to every year for both but I won't know till Wednesday. During chemo I saw my onc every time.0 -
My onc and PA trade off, I see one or the other depending on what I don't know!
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christean - clear margins minimum of 1mm, 2-3 mm more desirable - yours was measured in cm so you should be good.
I see my onc before every tx, whether TCH or H only, sometimes if he is unavailable I have seen his PA, but I always see somebody.
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I saw my onc for every Herceptin tx - every 3 weeks. During AC I saw her every tx - every 2 weeks - and saw the PA on the off weeks. And then when I was on weekly Taxol with Herceptin every 3rd time, I saw her on the Herceptin days. I now have a plan to see her every 3 months for the next 2 years. I see my BS twice yearly and my rad onc once yearly. I think after that 2 year mark I will hopefully reduce my doc visits - onc every 6 months and BS and RO yearly.
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