Class of 2009 - Sisters in the same time frame
Comments
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Hi Renee,
I had IMRT on the very machine the article mentions! And I was told how much better it was than traditional RT. Who knew? Not me! I seem to have come through okay. Hope so. That's the problem, it can be years before damage shows up
pam
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Mary -- It is indeed unbelievably frustrating that just when we most need true care is when medicine and insurance goes beaurocratic on us. It is totally unfair.
It sounds like it's MD Anderson that wants either the raw data or a new MRI. Have you asked the hospital that did the MRI to provide the raw data? If they have said NO, or if they say NO upon being asked, then I would get another MRI with MD Anderson so that they can give you something in writing so that (a) you can know for sure you are ok and (b) if god forbid there is something wrong, you can get treatment and insurance coverage.
My two cents.
It sounds like you are probably fine... but it sucks not to have something definitive in writing. Get something more definitive. You deserve to have that.
Lilah
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Thanks, All. Good advice. Lilah, all of this happened here in Dallas - two very prominent hospitals. I am going off-road to work with the folks at MD Anderson. Will start collecting release forms and records tomorrow.
This really does seem to be one giant "CYA" by the hospitals. Lovely, huh? I wonder what a report would say for a severed limb? Suspicious of interrupted connection to torso?!!!
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LOL Mary
Honestly our health care system is SO not about caring.
Lilah
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Hello Ladies,
So, the lyphmedema saga continues. I have been having constant pain in my left arm since last Saturday, so it has been giong on for over a week, and it's pretty bad. I go see my med onc on Wed. of this week so I was trying to stick it out until then. Well, Thursday night, I noticed swelling in my left arm, and this alarmed me. So, Friday afternoon I called my rad onc, whom I like better than my med onc, and got in to see him this morning. So, fast forward to this morning at 8:45am. Dr. comes in and can see the swelling in my arm, and then he mneasures and sure enough, swelling is there. He tells me I have to wear a comression sleeve everyday, he gives me a RX for and antibiotic, and tells me to get over to the lymphedema clinic this week. I am so taken back by this, I thought I was over it. I don't even know what I could have done to have it come on like this. So, I will do what I am told, get all my stuff and get my arm back to normal soon, hopefully.
Anyway, that is my rant for the day!
Hope everyone is having a great day!
Hugs
Jen
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Mary, sorry you are going through this crap..sending you a big magical hug to take away your back pain and stress.
Jen, hope your lymphedema gets better soon.
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Hug received, Micheleboots. It IS magical - I think I can feel my hair growing!
Jen, so sorry. So sorry. There are some good massage therapists who specialize in this kind of thing. Hope they find one for you. They say it can work wonders. Hoping you find peace with all of this soon. Until then, we are carrying you gently in our own cyber way.
XO, Mary
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So sorry Jen -- I have pain in my right (MX side) arm too and don't know if it's from the TEs or an early sign of lymphedema. No swelling. Just an ache from my shoulder down my arm... guess I need to see the doc and make sure.
Lilah
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Mary, Michele and Lilah-Thank you all
I feel the cyber love! Actually, there are 2 lymphedema specialists at the Wellness Center I will be going to, and they are certified ( I looked them up), so I feel confident I am in good care.
Lilah, you can never be sure what is going on, so I would get it checked out if you are having pain. My doc this morning told me that most patients that come to him have the symptoms but no swelling, and I had significant swelling. So, if you have pain, but no swelling, I would say better safe than sorry!
I got my compression sleeve this afternoon, and I have it on. It feels weird, but I hope I see a difference soon. I now just need to get contacted by the Wellness Center and get my appointment in the Lymphedema Clinic, and get my antibiotics and start taking them.
Thanks Ladies! I don't know what I would do without you!
Jen
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Jen,
Joining everyone to say I wish you were not having this problem. My neighbor, who never slows down, suffers on and off with LE. May I ask... did you have SNB? I have just been wondering if everyone has SNB anymore or do some of us have the traditional node removal? What makes the difference? And is either more likely to end up with LE?
Hoping you get quick relief.
pam
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Thanks Pam
I had sentinal node injections on the day of my surgery, then in surgery they did what I believe is regular node removal. I had 9 removed, so I guess that increases my chances of having to deal with this on an ongoing basis. I actually don't know the difference between node removal and SNB, I would guess that with SNB they don't remove as much??
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With SNB they usually remove two or three nodes... I think. I was wondering why you had 9 nodes removed. I do think the higher number raises the risk of LE but no guarantee with only 1 or 2 my doctor said. Did you say you are going to a therapist? From what I have read that is what helps. My neighbor says the pain is like a tooth ache... hard to ignore.
You haven't been shoveling snow? :-) Kidding, I hope! Gentle hugs for your sore arm.
pam
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Pam,
Not sure why they took so many, I thought I remember the doc saying something to the effect that they were clumped together, so he just took them all. Yes, there is a Health and Wellness Center on the hospital campus that I will go to and they have 2 certified lymphedema specialists there. Your neighbor is right, there is no ignoring this pain. It hurts to put a shirt on, it hurts to extend my arm out, it hurts to touch it. And it SUCKS!! As for shoveling, that is a big NO
I have been making my kids do that dirty work. Lately we haven't had much to shovel anyway. I did go to a couple TaeKwonDo classes to try to get myself into shape for the Avon Walk, but I know my limitations and didn't do any strenuous activity with that arm. Who knows what caused it to flare up? No sense in wondering, I just have to deal with it and get it better Thanks for the hugs
Hugs back to you Jen
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HI ladies
VINTAGE RW
MARGOB
Wow you guys have a plate full there ,i really hope all goes good its just the stupid time factor waiting waiting waiting with a few head banging to a brick wall in frustration ,hey listen i can get my magic wand out if you want and see if that helps, big hugs to you both
PRINCESS JOJO
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Mary - Hope you get everything you need to get some relief for your back pain. Administrative things can be such a pain. I should know... I'm a nurse and work a lot on the administrative end. lol
Jen - Sending prayers your way for relief from your lymphedema and that it resolves quickly.
Pam - I had a SNB and my surgeon removed 4 nodes, I still don't know why. The first two he removed during surgery he received negative path report on immediately. Then when I got a copy of the final path I saw he had removed 2 more for good measure I guess. I was a little ticked since I also know that the more they take the greater the chance for LE.
As for me I am quite irritated today with my RAD Onc once again. I found out today that I will not be finishing up my boosts until Thursday. I saw the rad onc last Tues when he drew the diagram on me for the boosts and then again on Thurs for my weekly visit and not once did he mention that he had increased the number of boosts he was ordering for me from what he had originally told me when we first met. The rad techs told me today when I mentioned that I only had 3 more to go including today and they corrected me and told me 4. They said he ordered 6 not 5 and I asked when and they said last Tues. when he drew on me.
Now why couldn't he have told me that? He has let me go all this time thinking I'm gonna be through Wed. Besides that, the skin around my nipple and the nipple itself is now breaking down and is raw and a little open besides being burnt. 
O.k. that's my rant for today!! SorryRenee
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I also had a SNB... from what I understand, once your sentinel node lights up they remove it (while you are under) and test it for cancer. If it is positive they remove what remains in the "clump" (as someone put it).... and that clump can be a few nodes or many (it varies from woman to woman). In my case, there were 17. It isn't like they could just take 4 once they determined it was necessary to remove the remaining nodes around the Sentinel node.
Lilah
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Lilah - What you are saying does make sense. I've never really had it explained. Thanks!
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Lilah,
Your explanation makes sense, but none of my nodes tested positive. So that makes me wonder why they took so many. I know the dr. said they were clumped together and that was why, so I guess that is the reason. Who knows?? So many questions with this disease! Way more questions than answers!
Renee- I am sorry you had that surprise of one more boost thrown at you. You are looking forward to being done and they tell you that you have one more to go. And for the rad onc to not tell you, that would make me upset also, especially with as much pain as you are in. When doing my rads, I only thought I was going to have 10 boosts and I ended up having 11. So kind of the same thing, but I wasn't breaking down as much as you are, skin wise, so I just let it go. But, if I was in as much pain as you are in, I would be very upset. Good luck to you, and believe it or not, within a week or 2 of finishing rads, you will be amazed at how quickly your skin heals. There is light at the end of this tunnel
Much love to you:)Hope everyone else is doing well! Alicia, Pam, Juanelle, Mary, Michele, and anyone else I missed.
Hugs
Jen
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Jen -- did you have the SNB? That is where they shoot your nipple up with dye (and it hurts like an MF-er)... it does seem odd that they removed any if none were positive. The whole idea of the SNB is to identify it AND to test it while you are under to see if it has cancer.... then supposedly they don't remove more if it doesn't. Only thing I can guess is they did not test yours while you were under (just identified the SNB and removed the cluster).
Mimi -- I only KNOW this because after seeing all the stats on this site I asked my BS (NOT the one who removed the nodes but a very good BS) why so many were removed on me if only 1 had cancer and that was what she told me. I love it when you can get clear explanations! My only question now is: why is it that, so often with cancer, it's a game of "you have to know and ask the question to get the answer"? I suspect if my current BS had been the one to do the SNB, she would have told me MUCH more in the first place.
Lilah
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Hi Jen ~ I had 10 nodes removed. I had what Lilah wrote where they shoot the nuclear dye into the breast and it sticks to the lymph nodes. YES ~ my sentinole node when I was on the table was negative. BUT ~ from what my breast surgeon said they still send it for more tests after that and it can then sometimes come back negative. So my surgeon took a few other ones that had dye pooled on them and were a bit puffy looking. SHE even opted to take sentinole and a couple of nodes out on my non-cancer side as she said it is a bit aggresive, she has seen cases where there can be cancer in that side. I SAID go for it. Thankfully I have not had lymphedema show up, but my NUMB-derarms sure are still sore and NUMB ! So that's my info on that. I think each surgeon varies. AND the nodes do tend to clump together sometimes so they have to take more - I think?!
Hope everyone is feeling good !
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Princes Jo Jo - Glad to know you are in my corner! The docs don't stand a chance against your magic wand.
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You know I just hate it when I have written to everyone and then forget and get off the page for a second and lose all my message. Now I will have to rethink about what I had written and do it again.
Until then, I hope everyone is having a good evening. I did #10 rad today and have no SEs yet.
Juannelle
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Juanelle - so glad to hear your rads are going well.
I met with the radiation oncologist today and will be starting radiation on March 22nd and having the planning/simulation week of March 8th. I won't know until they do the scan, how many fractions I'll be getting. It'll either be 3.5 weeks or 5 weeks with 5 boosts (3.5 weeks is the norm). I just have to get final chemo done this coming Monday (Feb. 8th) before I can think about the next treatment. The countdown is on...
Regarding sentinel node, my surgeon took two out. I guess when he did the surgery two lit up or maybe there wasn't anything else in the cluster. I'm not sure if both were sentinel nodes or it one was a regular node??
Have a nice evening ladies!
Sherri
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Juannelle! Great news on the no s/e's yet.
I'm so jealous, sherri, that you have a plan already. All I know is that I will have 33 treatments, but I have no idea when they will start or what the procedure will be.
I am meeting with the medical oncologist in a couple days, so whatever rads I get will definitely be after any chemo plan I'm put on.
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I will try this one more time, but if I lose it, I am done for the evening.
Mary, I do hope that you are feeling better and you have gotten some relief from your back pain.
ezscriiibe, you will get a plan soon I am sure and it will all fall into place. It seems to take forever to get everything started. Once it starts it seems to go pretty fast.
Sherri, great news about the rads and your last chemo. Finishing chemo is a milestone, so contrats.
alicia, sorry to hear that you have numb-derarms. I have not ever had any problems where the nodes were taken. I consider myself very lucky. Hope you are doing well this week.
renee, you are almost at the finish line. WooooHooo for you. Sorry that you have had so many problems. I am keeping my fingers crossed that I will not have many SEs with rads.
jen, it is pretty amazing how different the surgery and treatments are for all of us. It seems that everyone is just a little bit different. That is OK as long as none of us have recurrence. It would be interesting to know what treatments the ones with recurrence received. There probably is, they just haven't published it.
lilah, hope you are having a good evening.
Hugs,
Juannelle
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Ladies, Saw my Rad onc today...looks like I will be starting rads in 2-3 weeks...aaahhhh. I thought/hoped I would have a longer break between the two..oh well. The sooner I start the sooner I will be done.
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Juanelle -- thanks for the good wishes! And the same to you
Michelle -- that's the spirit! Get it over with... and hope it turns out to be easy for you.
Lilah
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I had 15 nodes removed at the same time as my lumpectomy. The surgeon said he would have liked to do a SNB but because I had already had a biopsy on the lump done there was no point as everything would light up!! I think he thought I should have seen him before doing anything else. But not knowing any better I did what my PCP told me to do.
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HI LADIES
Juannelle glad the rads are going fine and no side effects how long does the treatment take .
Michele soon on to the rads well big girl now !!!!! my last chemo tomorrow and I'm starting to feel a bit jittery about the side effects. i passed the cancer clinic where i get my treatment today and i started to feel funny and i wanted to be sick. a bit of anxiety i think. ill take a pill in the morning my sweet onco gave my for anxiety any one else had one what kind of effect should i expect ?
Had a blood test today and again my veins were a bit rebellious they couldn't find a vein and then my blood was just spitting out she just got enough but you should see the bruise ohhh carnt wait till its all over
PRINCESS JOJO
ONE MORE SLEEP TILL ILL BE JOJO JUST ohhhhh poor me
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Gilly -- that doesn't make sense to me. I had a biopsy first (done by the place where I had my mammo). Then I had a lumpectomy (done by surgeon). THEN I had a second lumpectomy and SNB. There was no issue... I had one node. That said, since you had 9/15... he would have had to take the whole cluster anyway.
JoJo -- I forget what JoJo Just means! But I wish you luck and strength.
Lilah
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