TRIPLE POSITIVE GROUP
Comments
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jenn awesome news! good luck w surgery! i know how much you wanted this day to happen
ok "breast friends" as lago puts it. I'm having a meltdown today. I don't think anyone can listen to me anymore. My friends and family have all pretty much moved on from BC and here i am. I went w my friend yesterday to her plastics consult. She already had a msx no recon (they wont do it here if you are having rads). So she is doing the fat grafting procedure which basically eliminates the need to move fat/muscle from your back or tummy. Well im having the lat dorsi flap procedure done in 2 wks and i am having major cold feet. I am seriously doubting having that back flap done and possibly risking permanent issues with movement. Im only 43 and i am active. I was never offered the fat grafting as it is only done in this one hospital. Keep in mind this is canada, public healthcare. Not so easy to change hospitals/docters etc. I called my nurse today and asked her if i could at least try to get into the alloderm trial (its only on trial here in canada) she said she would speak to the study nurse and get back to me
im so frustrated bc i see all you guys having implants/recon with rads and no back surgery. I am in tears right now
sorry for the rant
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rozem - see if you can find and watch episode 2 of a British documentary called Dawn Porter - my breasts could kill me. I just watched it tonight and it shows a woman having the same surgery as you. When you see her in the hospital a few days after the surgery she is definitely not looking restricted in movement :-)
Jenn0 -
thanks jenn - i will do that. I just got off the phone w the study nurse and im not eligible bc i had rads. She said that my PS is the best at this procedure and she said my scar will be "almost invisible" over time. She said i will be able to do everything i did before, over time. She made me feel so much better.
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I can't claim Breast Friend as mine. "invisible" on the Illinois ladies called me that on the phone once. We both liked it.
Deportation Delay: My port pre-op just rescheduled to the 18th. Hopefully we can get this out in October.
Rozem I think you need to post and talk to ladies that have had the flap procedure. I know my neighbor is doing implant without the flap and so far she keeps having issues. She is back in an expander. She may have to go without or do the flap anyway.
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Roze,
I agree with Lago. Talk to someone WHO IS ACTIVE that has had the flap. My PS ruled it out for me as soon as I took my clothes off. He could tell I use those muscles with my active lifestyle.
He also said, for women who aren't active, it works just fine because other muscles compensate. He even said it works ok for women who are active, for awhile. Then the muscles over compensating start having overuse issues, later down the line. (If you maintain an active lifestyle.)
My PS has been doing this for a long time. My second opinion, right out of training, said the shoulder flap thing would be fine for me even if I'm active. I went with the first because I do use my back and shoulder muscles DAILY, and I have an overuse injury from running.
I also had alloderm. It worked great for me. I hope you can get in the trial. If not, perhaps you should tell your PS you need an alternative since you are an avid...(insert workout that requires muscles in back here).
I know the socialized medicine thing doesn't give you many options. We have a microcosm of it in the military. I'm so sorry.
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Soltantio yes it is a busy thread and I have found it hard to keep up. I have computer issues now at home, so I can only write from work until I get the issues resolved and seem to miss a lot. Yes I am very high ER+/PR+. I took tamoxifen for four years, from 1997 to 2001, when I had the bone mets. I then was on Femara and now Aromisin and believe it or not, I'm on Tamoxifen again. My Dr. said that after so many years not on tamoxifen, studies have shown that it can work again. I'm just concerned that there are other hormone suppressing drugs which I haven't had that perhaps he should be trying. This is all part of what I want to discuss in my consult next week. I know my case is somewhat unique in that I've had bone mets for over 10 years that he's managed to keep under control. Could be he's holding out the other drugs until he really thinks I need them. I guess its good to know that I still have many options without having to resort to the more difficult chemo drugs.
Jenn, good luck with your surgery.
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jenn - sorry I am coming in late today - best of luck mate!
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Jen, thinking of you, good luck. Rozem, don't get cold feet, do what you have to do. Pear, this thread moves at lightnening speed.
I am still on abx. I have to go in to the cancer care center today, to have my port access renewed. The cover they used this time doesn't itch nearly as much as tagaderm. It has beige colored tape at the edges, I need to find out what type it is so I can use it in the future. So much better. I am tired from the abx, but I actually feel better and my temp is back down to 96.4 which is my normal temp in the middle of the day. ( so a fever of 99 is a real fever! LOL)
Much love to all.0 -
kayb - here you go!
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kayb - that is what I was thinking! This roo looks like he is about to give a hug too!
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Best wishes on your surgery Jenn!
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Jenn- I am so glad you got the go ahead for surgery. Good luck!
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Had a very upsetting morning....and I know you'll all understand. I had my 6 month post lumpectomy mammo yesterday. If clear I would be 6 mo NED. Didn't hear anything yesterday so I called the BS whose office is across the hall from the Mammo suite and is extremely important to the entire hospital. I asked if I could speak to my md about my mammo results. This new young receptionist told me unless I hear otherwise i should assume it was okay. The old no news is good news. That the doctor can't call everyone. I was stunned and stammering but it's my first mammo, I'm still in treatment......it shook me to the core. This was the doctor I trusted the most and counted on for my breast care for the rest of. my life!
Went for a workout and when I got back I called the Radiology department and asked if I could speak to the radiologist to get my results. She obviously knew all he girls in my mDS office and asked who had told me that. She told me you call that office and tell them you want
your results. You are entitled to your results immediately.
Called back and spoke to an experienced receptionist who put me through to the PAs. I left a message explaining all this saying I wanted to speak to a human being who had actually looked at mammo to tell me it's okay.
Within 20 minutes I got a call from the PA giving me my results which appear to be okay with differences in the bad breast resulting from treatment and surgery. Additionally ...the radiologist wants me go have an US on the other breast because I have very dense breasts.
I tell you all...especially you newbies....that even someone who has been navigating this system for a year can get emotionally flustered and forget to be our own strongest advocate sometimes.
Also...I' plan to get my mammos in a place that gives me the results directly in the future.
within 20 minutes.0 -
Oh Ashla- I am so sorry that you were put through that. I also feel that I have amazing drs...but, could do without some of their staff. I recently had a "stand in" surgery coordinator call me to confirm my mastectomy on nov 6...and then wanted to know if I had called my PS to get things arranged with him for reconstruction the same day? Ummmm...excuse me? Isn't that your job???? She also had a few other stupid questions for me...like did i need radiation??? how would i know? I had a meltdown...
I am sorry but we should be handled with care when it comes to things like our follow up mammograms!!!! And the men and women should be trained to handle these calls with a sense of urgency.
All that being said...I am so glad your mammogram came back okay.0 -
Ashla that's typical of my last too. The support staff sucks and is clueless. Always ask to speak with the nurse. You ARE ENTITLED to know your results as soon as their in. My NP called me to tell me the results of my liver scan but got the physical results this week. My NP didn't want me to stress out.0
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Jennifer404-Great article!!!
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Ashla, that sucks that staff member put you through that. Good for you for following up for yourself. So glad your mammo was ok tho.
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Ashla I'm sorry that you had to go through so much stress just to get your mamo results. I also find it amazing that some of the staff is at my oncs office and the hospital are so clueless. But in the many years I've been doing this I've really learned to speak up for myself and demand answers. The main thing is that you got good results. Great news.
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OK it's about time for Jenn right? I'm trying to keep track but this is difficult.So hope everything goes accordingly
MOON i noticed u said about u'r normal temp. I find it interesting bcause my sister and I bot thave a low normal temp 96. and so did my dad---but hat ets me is when mine is 99 I feel horrible like it's way off and I feel a fever there. Does that happen to u too? Cuz when it's almost 99 or over it knocks me out.
Rozem are u feeling better now? I hope so. I feel so bad for all of u who go thru this.
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ashla, what a frustrating morning. Glad you will be going for future mammo's where you get your results immediately. My new place does that, and it is so great!
kayb- awesome articles!
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Ok...I just had treatment number 5 on tues and just started throwing up about two hours ago. I took three zofrans today (before i started vomiting) and they did not help. Should I eat? Should I drink? Should I take a Benadryl? Any advice?
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jennifer - do you have a second line anti-nausea med? Zofran had no effect for me so I went to Compazine and it was much better. Also Ativan has an anti-nausea capability - do you have any of that?
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Jennifer if you can drink. You dont' want to get dehydrated. If drug #2 doesn't work all your onc tomorrow and get another drug. There are many but they don't prescribe the expensive ones at first. They wait to see if the cheap fail before the insurance will pay for the $$$ ones.0
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Jennifer - I used promethazine and it seemed to work pretty well. I was nauseous a lot but didn't throw up. I agree that it is good to call, there are lots of anti-nausea medications to choose from. Watch out for dehydration.0
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Omaz thanks for posting the BC article. A lot of information to take in.
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Zofran intramuscular works for 24 hours, then take oral Emend at the same time. You need to get hydrated, though. With all that vomiting, and the ensuing big C from the anti emetics.
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Your welcome pearlady - lots of information out there. Glad you have joined us here!0
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pearlady - I meant ask you about your name - do you grow pears?0
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Thank you ladies. I took Benadryl (prescription) strength and I am trying to eat crackers and ginger ale (i think it is working). I am shocked at how fast and hard this came on. I only have Benadryl and zofran right now but will call tomorrow and get something else. I have a friend that is a nurse and she said you have to try to eat no matter what.
Thank you ladies. I got concerned because I don't recall any of you saying that you actually threw up. Wasn't sure if I need to worry or work through it. As usual you have all helped.
I hate what this is doing to my husband and kids. My dh has become so detached. I am not sure that he knows how to cope any other way. And I had to lock my two year old out of the bathroom while I got sick and she pounded on the door screaming that she needed to "help mommy" as my husband dragged her back to the other room. Telling her that mommy had to clean the bathroom. It breaks my heart. This takes such a toll on our families.0
