TRIPLE POSITIVE GROUP
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Robin - Her2 FISH testing has four possible results, 1) amplified, 2) not amplified, 3) equivocal, or 4) indeterminate. To reach an amplified result your ratio must be greater than 2. Since your ratio is 2.65 your result would be considered amplified, thus positive. The OncotypeDx would not be ordered with an amplified FISH result because Oncotype is not set up to test known Her2+ patients, it is a test designed for ER+, Her2- patients. Reflex testing is testing that is ordered due to the result of a previous test. In your case this comment is meant that Oncotype would not be ordered as a "reflex" test due to the positive result of your FISH and the size of your tumor. Your tumor is of standardized treatable size for a Her2+ tumor, meaning that all 1cm tumors that are Her2+ are suggested to have chemo and targeted therapy (Herceptin). Oncotype Dx would not be done since its purpose is to determine whether chemo is necessary or recommended so the test is unnecessary because the standard of care is to treat.
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Hi SpecialK thank you helping me. i was jyst woundering bevause mine was idc 0.25cm
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robin - sorry - going off your sig line for the tumor size. OncotypeDx would still not be ordered since the test is not designed for Her2+ tumors, of any size. What is the treatment recommendation for you from your MO?
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My MO give me 3 options 1 treatment the hormones (tamoxifen) and said we can remove ovaries down the road if interested. 2 herceptin and tamoxifen 3 taxol, herceptin and tamoxifen. I had a bilateral mastectomy with reconstruction already.
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SpecialK, thank you so much for all the helpful info! I didn't completely understand all the testing numbers etc so your explanation helps. I'm in neoadjuvant therapy with Suburbs; so much information and surgery decisions to make! My BS follows the same protocol as yours i.e. pathology would be done on both breasts in addition to SNB. My MO also said pathology is the only way to accurately confirm cancer cells as imaging cannot pick up every cell. I have an MRI on both breasts every 3 months and tumors/enhancements are not visible. I never had any abnormalities in the right but they still do MRI to monitor and confirm no changes. My MO has been very clear that while the MRIs indicate the HP treatments have shrunk the tumors in the left, surgery is still the only way to confirm pCR. My husband is still asking why I need surgery if MRI isn't showing tumors, so my MO explained the concept several times.
Suburbs, I'm surprised at some of the responses you're getting to your questions. I'm finding each medical team/cancer center has their own philosophy on treatment. The first hospital I went to was very standard of care and when pressed for other treatment options and/or stats, their reply was "there are no other options". I went for a second opinion and found a cancer center that offers individualized treatment with the utmost concern for maintaining quality of life. Keep pressing for answers until you feel confident in what is being offered.
I had a Mammaprint done before I started treatment, which is a test to determine risk of recurrence and whether early stage BC patients would benefit from chemo. My results were low risk, 93% cure with HP and hormone therapy and no chemo. My test was paid for by cancer center. I was not offered this test at the first hospital I went to so I'm not sure if it is standard or if you have to request it onyour own.
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Chelsea555 - I am very sorry for what you are going through. I pray you find answers and support here, best of luck. Keep the fait
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bbwbc55, deni1661, and poseygirl, thank you for your feedback and advice.I'll double check on the pathology of the good side and make sure that gets done. I could have misheard that point.
Specials, I reread your note and will add asking about SnB on good side. Doesn't hurt to ask.
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I am still alive after TP diagnosis in 2003.
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HI all,
Thought I would post my wonderful news today. There is no cancer in my body at the moment. After this past year I am in a state of disbelieve but beyond relieved for the time being. This board has been such tremendous help threw some of my worst moments.
I have decided to color the little hair I have (all gray) with organic products tomorrow and try to start life again...:)
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Congrats, jb134!
Oh, Kattis, I am so happy for you!!! Pick out a fun color!
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kattis - yay!
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Congratulations Kattis894 and many many many more to come!!
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Katiis congrats! jb 134 congrats too!
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kattis894, bravo and hurrah. So happy to hear your excellent news. Nice to get a report card that says it worked given what you have to go through to get there. Anyway, congratulations and many many more
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love my MO. I have just been feeling off since December. I talked to her about it, she wants me to take a 2 to 3 week break from tamoxifen to see if I feel better. If I don't, we may add effexor...anyone taken effexor? If I do feel better, we may switch to an AI. Staying on lupron, she said it's a bad idea to take a break from lupron?
She is also doing a thyroid panel and checking for vitamin deficiency and estradial. Let's see...
I just want to feel better. I've been "punky" since December...I'm also the heaviest I've ever been... :-)
Kattis -yay yay yay!!!
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Has anyone here lost their voice, Layringitis, as a side effect of chemo?
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Wonderful news Kattis, I am so happy for you! Your news is inspiring for us all thanks for sharing.
jb134 congrats, great news for you too!
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beautifully - that sometimes can happen as chemo can irritate all of the soft tissue. Another possibility is that the chemo agents are causing acid reflux, which is then irritating your throat. You should mention this to your MO, he/she may prescribe an acid reducer, which can help - this is pretty common.
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Chelsea, while I personally am not going through the wanting to conceive feeling (am 48 and just had my salpingo oophorectomy), I know a girl who did conceive at 36. She had gone through all the treatments (was also triple positive) and went off Tamoxifen after 2 years. She did conceive and now has a four year old daughter. I just don't know how long she waited. So it can happen! May I ask why time is not on your side (i.e. before getting into more aggressive options?).
Kattis...congratulations to you...that's really great. Did you have a bunch of scans, then? You deserve to go treat yourself. I remember feeling like I wanted to buy a few pretty things again last month. It's nice to feel that way. I have been wondering about my hair too. I don't want to commit to anything permanent, and don't want strong ammonia products. I may go for something like you to see what happens. You should show us when you do it
Carolyn
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Oh dear. I haven't seen much discussion of this question. So, if one does TCHP and then has surgery and the must continue with Herceptin and possibly radiation, how does this impact tissue expanders and exchange surgery? Do the fills happen while Herceptin or radiation happens? Is everything on hold until the two therapies are complete? Does exchange have to wait until Herceptin is done? Yikes. My head is spinning.
I wonder if we need to do a TCHP surgery group thread? The monthly chemo and surgery threads just don't exactly address all the triple positive twists.
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good question suburbs, curious to hear what others say
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Hmm, some women have the expanders put in with BMX; some start reconstruction after radiation. I had my lumpectomy (early January), then waited a bit to resume Herceptin and start Aromasin/Zoladex (late February). I began radiation in March.
I think the big problem with doing expanders with the BMX is that radiation can cause problems. Some plastic surgeons won't start reconstruction until after radiation is completed. Herceptin isn't really the issue. But, hopefully, some reconstructed ladies can chime in!
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good question Suburbs...my PS advised recon would take place only after radiation if I end up needing it. The plan for me is surgery to confirm pathology, if cancer cells present then radiation/chemo recommended. If no cancer then I'll have recon 2 weeks later. The HP treatments will continue as close to the 3 week schedule I have now around the surgeries.
I too am interested in what others may have to say. These surgery decisions were very difficult for me but I finally had to make peace with my choice and move forward.
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Usually there are two different approaches to reconstruction if radiation is involved. If you have surgery and expanders placed immediately you can fill aggressively, sometimes slightly overfill to account for some rads shrinkage, then do radiation with the expanders either still filled to max or deflated and refilled after rads, then exchange takes place after some healing time. Usually a longer wait for exchange to allow for a better look at how the skin will behave. Herceptin is continuing during this time period as surgery is not necessarily contraindicated unless blood counts continue t be affected by Herceptin, as can happen with some patients.. The other approach is to have MX or BMX surgery, do the rads, wait a longer period of time - usually a six month minimum before beginning the recon process with expanders. Some PS will fat graft after rads and before starting TE to help the skin regain some stretch and integrity - this is a fairly new approach but is definitely helping some women do recon without the need for a lat flap surgery in addition. Some PS will try expanders after a period of healing and recovery, slow steady fills, then wait a longer period of time between last fill and exchange, all while still receiving Herceptin.
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my PS said he can do an immediate recon on me after BMX as long as he sees a good post BMX surgical sight, meaning he wont foresee an infection setting in later on or else he will remove the implant if infection sets in. so on surgery day, he will both have the TE and implants ready in tthe OR and i may wake up either with TE's or with a reconstructed breast i prefer as i will only have one surgery ( well, he might do fat grafting ). but i will have to ask him what if radiation will be advised or a node will be affected? i dont think you can do radiation on a completely reconstructed breast, right? so maybe TE's will be a better approach. my BS and MO thinks my nodes are clear based on MRI and 2 ultrasound in the beginning and prior to TCHP and i am responding to neoadjuvant TCHP but i know that pathology will always have the final say. whew.maybe TE's will be a safer route....( and i am horrified to have te's to be honest).
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Jumpship
Go to this topic:
Topic: Bras 101: The Great Post-Exchange Debate
It should answer all your bra qurstions.
As for night time, I still sleep in a sports bra or surgicalvest. My PS recommended it to avoid the "side slide."
Coach Vicky
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Thank you all for your congratulations. It does feel pretty good but think I am still in chock. It is going to take some time to get back to some kind of "normal" feeling but aware this ordeal has changed my life in many ways regardless.
I decided to say no to immediate reconstructions and therefore expanders. I spoke with a professor of breast cancer since my clinic was for the expanders and I was confused when I first layed eyes on that plastic piece and immediately thought "that is going to give me problems", it was just a gut feeling. I did continue with 25 times of radiation. After discussing it with the professor I was certain to wait with reconstruction and push for surgery on my healthy side to make that breast smaller. My breasts were large. According to my clinic you have to wait for 2 years before any reconstruction can be made on the MX side but I am now booked (after radiation and no evidence of cancer) to operate on the healthy side during the herceptin injections every 3 weeks. I just could not come to terms with having a "hard" silicon breast that would make me sleep on my back etc., but this is just me. I am a bit older and do not feel the flat side bothers me much. The healing was also quicker. I do hear you because I was as confused as you regarding my options and found the decision to be difficult in the midst of all the treatments. I think there is a board on here just for this subject if you like to inform you more about this.
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ladies, i forgot to ask my PS when i had an initial consult with him.do we always need to use bra after reconstruction???? i am not wearing a bra anymore due to reflux/gastric emptying issues so i just wear camisoles with built in bra as these are less constricting than a regular bra...sorry if this has been discussed before.
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YAY KATTIS!! I am so happy for you. Reading your message gave me tingles and misty eyes. You have been through so much. I am so happy you have broken through the dark cancer forest into a clear open space. Revel in it!
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Suburbs- It depends on your Plastic Surgeon. In my case, I had expanders placed with my MX (which was after chemo.) I already knew Then they very quickly filled them- this was over about four weeks. I had to do a lot of PT during this time to get where I could get into position for radiation during all the surgery recovery and rapid fills. Then they deflated one side to do radiation. After radiation they refilled that side again, I think it was over two fills. Then I have to wait six months from the end of radiation to do the exchange (at least). My right side (radiation side) is larger than my left, since radiation tightens and shrinks everything. And she actually just put a bit more in each side when I saw her at the 3 month post-radiation appointment. I won't have the exchange for a couple more months.
Jumpship- Good question, you might want to ask it on the TE or Exchange thread. I've been searching for the same. The best option I've found is sleeping in a light-support sports bra. I still have my expanders in and it really hurts when they shift to the sides at night.
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