TRIPLE POSITIVE GROUP
Comments
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Rozem , interesting what you said about having a benign growth in the same spot. I had a sebacious cyst removed from the SAME spot that my large tumor appeared exactly 14 years before. The BS actually used that old incision scar to do the core biopsy. Isn't that weird? I asked my BS if there could be any link, and she said that there was none as the original cyst was clearly benign. Seems fishy to me though!
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Yay Trish!!0
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Yay Trish!
I'll be doing the same with the port when I get to where you are (and mine's only just gone in). Just walking towards that chemo suite area of the hospital makes me nauseous so I'm definitely not going back there every 6 weeks if I can help it...
regards Jenn0 -
I get my port flushed every 3 months. So far no problems.
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Thanks girls
Back from the final infusion - it's all over now! I'm so relieved.
Lago - for some reason here it's reccommended to be flushed every 6 weeks, not sure why the different protocol. I just want the darn thing out.
Trish
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Trisha,
They wanted to flush my port every 4 weeks...put me on the schedule for 5 years!!!
Um, NO WAY.......lol.
It feels so much better being out. I can turn my neck, do pull ups, and all without pain and pulling....I think you're gonna like it being gone.....
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Congrats Trish! I remember my last Herceptin day vividly. It's a great milestone!
I had my port removed about 2-3 weeks after that last infusion. They said if I kept it, they would need to flush it every month. Yuk. Especially since I have been known to vomit during saline flushes!! No thanks. LOVE having it out.
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Congrats Trish! I smiled from ear to ear on my last one.
They told me every 6 weeks for flushing it. I went for one and was so distraught about entering the chemo unit again that I begged for it to be removed. It comes out this Friday. I am happy with my choice. For those that got it out, how were you the day after? I have dragon boat practice on Saturday morning and am wondering if I can paddle.
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sunflower - It was a lot easier coming out than going in. Don't know about paddling though, I was told to take it easy for a couple days.0
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Sunflower,
You'll have stitches, so...I don't know how hard you paddle...don't want to rip those babies open.
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my onc said it can comw out the day after my last herceptin, which I think will be March 20. I think I will do the nipple thing and port removal all at once.
Lago, I promise to give moe notice. I really didn't plan to go, but after we dropped her off at the megabus, I was looking at my schedule. I had a couple houses to show that afternoon, with the last one being a downtown condo literally a block fro the station. I had nothing for the two days after, so on a whim, I hopped on the bus and rode up. When I woke up the next morning, and Laura was heading out, I decided to try and reach you.0 -
I was really happy to be in the chemo ward for the last time, but after it was done, I got back to my car and burst into tears. Shaking and sobbing. Got myself under control and drove back to work, and walked in and my co-workers were all really happy for me and I burst into tears again. I know it was just a reaction to the stress of the last 14 months of treatment, but it did catch me by surprise. I feel great now, and slept really well last night, it's as if the tears were a good release of all those emotions.
Trish
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Hi all have been lurking around this thread and just scanned a post about the postive node involvement.......... I know its not a great thing but ......... isn't it true too that a lady with no involvement can have recurrence and mets???? As I had 6 nodes out of 16 isn't it good that 10 were clear and that the cancer had to go through 10 more?????? Just a little dazed and confused here. Thanks
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I totally understand. I did the same thing. I think its just a release of all the emotions. We keep being strong, and holding ourselves together. Its a crazy mix of relief and a year of pent up other emotions. You earned every sweet tear. Congratulations!!!
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Congrats on finishing your Herceptin Trisha what a glorious feeling that would be!!!
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trisha-anne - Yay on the last Herceptin - I am right behind you on Thursday for the last one! Don't know what the MO's philosophy is on the port yet - will find out on Thurs.
kennylynne - sadly, it is true that someone with no nodes can recur and have mets - BC is a sneaky devil!
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kennylynne It's not an exact science. Sure its better to have no nodes and smaller tumor but there are women that have small tumors and no nodes and get mets. There are women with big tumors and several nodes and never get mets. Could be in your case yes they got to the nodes but never get mets. Could also be if they did get further the chemo/herceptin or hormone therapy got them. If they are saying you are NED then go with that.
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SpecialK
We are very similar in timelines and dx. Wishing you all the best on your last treatment on Thursday. I hope you are able to get your port out soon too.
Trish
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All ladies that have had a BMX..help!!
My PS appt. is tomorrow, and I am not sure what to ask. Any advice??
I'm getting saline implants, no alloderm.
Thank you!!
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awnooo - I answered you on the other thread!
Trisha-Anne - Our diagnosis date is also very close! I am having exchange at the end of February, got my last fill today (yay!) so I asked my PS if he could take it out thinking that I would rather have it out during the surgery than a separate procedure. Also, crafty me is thinking that the PS will make a prettier incision line - my port location is visible 100% of the time because it is subclavian, so the scar will always be seen.
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Hi all
its me - wanted to post my post surgery results ( i had neo chemo for 16 wks prior to surgery)
they did a SNB and all clear !!!
I did a lumpectomy and from what they tell me no visible tumor - pathology will tell the whole story but I am happy to hear that (I am following up with a BMX and reconstruction)
i have a question for you ladies - is a SNB accurate? i hear the false negative rate is 5-10%. This concerns me as I am done my chemo. I am doing rads (because I had LVI) so maybe they can do under the arm just in case???
this ride is such a roller coaster I swear
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Roze,
You can ask them to do the underarm .. they might...especially if the lab work comes back micromets in one or more of the nodes.
The whole node thing is a bit misleading. For instance, they took 4 of mine, the smallest cancer was the one CLOSEST to the tumor, the largest node was the one the farthest away! How weird is that? I also had LVI.
Anyway, clear nodes is only good news. There are no negatives.
But don't forget that there are two other ways for cancer to travel. First, through tissue which is why we have surgery. Second, through the blood. Right now there is NO ACCURATE WAY to test the blood for cancer. So having no pos nodes is AWESOME! But there is still (in my mind with LVI) 1/3 chance it traveled anyway. Not saying that to scare you...
Her2 likes to travel. I think it comes with a packed suitcase. So once I learned I had LVI, my tumor set up its own blood supply, I resigned myself to the fact it could have easily spread through my blood, and hope chemo takes care of it.
If my nodes were clear, I would NOT have taken rads to the axilla. This gives you a 5% lifetime risk of lymphedema. But that's me.
At some point you have to go with what you got. Right now you got NO NODES!! WOO HOO! And no visible tumor!! THAT'S AWESOME! In my mind, if the chemo took down your tumor, then it could easily handle any stray cells lurking around .... they're smaller, more exposed to the chemo.
I see nothing here but good news!
Here's hoping the lab work comes back CLEAN!
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Hooray TrishnaAnn and SpecialK: I get excited just thinking about getting deported.
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thanks so much TonLee -
so true about the LVI - when i found out I had it I knew that this sucker was even more dangerous. You can never under estimate her2, it travels fast
i actually choose to do a "stronger" chemo regime then they first recommended due to this.
i think i will ask my rad onc about the axilla thing just in case
have you heard anything about not being able to do reconstruction after at least 4 mos post rads? is this true?
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rozem - I am very active on the TE TROUBLE thread, and even though I did not have rads (I did ALND) there are a number of ladies on that thread who have had recon issues from rads. Give it max healing time, it is a better safe than sorry thing. After all this the last thing you want to to have failed recon and the hassle that comes with that!!! My BMX was 11/1/10 and I have still not had my exchange!
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Omaz & Tonlee- Thanks for the advice, my teammates are all BC survivors and they paddle hard. I'll sit this one out. No need to pop a stitch. Two more days till deportment!
Rozem- I had a SNB that was originally clear and later came back with micromets. I also had LVI. I still opted for lumpectomy and rads. They zapped my underarm during rads. Originally they said nay to the zap in that area, but after some begging they agreed. I felt since I did not opt for MX, I should get the max in rads. My skin did really well thanks to Omaz's regimen. I take LE precautions and so far am fine 8 months out.
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sunflower - the SNB that was originally clear, was it tested during surgery and then did it go to pathology and come back with micromets?
pathology is everyhing i guess - they told me yesterday they would see micromets when they tested during surgery now i am wondering about that
i am going to have them zap under my arm whether they like it or not!
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rozem - generally speaking, the sectioning in the OR by a pathologist of the SNB is perfunctory. All of that tissue is then sent to the path lab and they do a more definitive slice and dice. My micromet was not seen in the OR but was later seen on the post-op path. This is more common than you would think and throws fuel on the emotional roller coaster fire!
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Hi Ladies. I am back to this website. I leaned on it heavily during treatment. After treatment (chemo, herceptin) I have taken Lupron for three years and now just started Tamoxifen. The Lupron was not fun. I am haping Tamox treats me a little better. I went into instant menopause with the Lupron so I haven't had a period since 2008.
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What is Omaz's regime for rads? I will have breast and axilla and the RO is talking "hitting it hard" and I'm so scared of the burn. Any hints would be good. The RO mentioned Aquaphor the other day (not available in Australia so I'll have to buy it online)...
Jenn0
