August 2010 Mastectomy

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2010

    WinterStorm, hello!

    Wanted you all to know where to find some lymphedema risk reduction guidelines. The risk of lymphedema is for life, but there are some simple life-style adjustments we can make to protect ourselves. Here are two web pages with lots of suggestions:

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    http://www.lymphnet.org (see the Position Papers on Risk Reduction, Air Travel, and Exercise)

    Do feel welcome to stop by the "Lymphedema After Surgery" forum here and ask any questions you may have -- there are lots of "swell" Sisters there ready to offer information, encouragement, and support!

    Be well,
    Binney

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  • Halah
    Halah Member Posts: 352
    edited August 2013

    Hi Binney, thanks for that. I am one of those women who wasn't told and didn't know I was at risk for lymphedema. Oh joy, it's something else. I recall in the hospital the pink bracelets on both wrists but I was too out of it to ask what they meant. They took my BP on my ankle and didn't understand why they did that.

    Lots to learn, thank you so much.

    Mindy

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  • taranebraska
    taranebraska Member Posts: 129
    edited October 2010

    Anne068 and I are both doing chemo.  I'm TCH x 6, and herceptin for one year.  First tx was okay, 2nd tx sucked the big one and I am whining loudly.  Hair's mostly gone, wearing a wig that fools most people.  It sucks to start feeling well, but knowing just the next week you have to start all over again.

    I am morning the loss of my breasts too.  I've got divets and peaks all over the front and sides.  Will inquire about fixing them all once chemo is done and they think I'm far enough along.  Would love to afford a little tummy tuck at the same time!  I will begin the hunt for the perfect tattoos as well .. a nice mountain scene on one side that cascades down to a field of flowers on the other?

    I got my hair clipped really short last Friday as its all falling out in clumps.  My DH called me GI Jane.  I had to tell him, I have no breasts and now no hair.  I'm thinking I'm not really a Jane any more.  Kind of interesting to feel gender-neutral... I can still wear high heels and fun jewelry, but it's almost freeing to pick how I'll go forward into my future -- different, like shedding all my previous bad habits and attitudes, too.  I'll stop now cuz looks like I could wax on philosophically all afternoon.

    I hope you all get out into the sunshine, numb breasts or not, and enjoy the fall weather!  I'm thinking of you.

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    Tara I'm doing TCH x 6 too. My first was Tuesday.

    As far as all our changes I hear ya. First they took my boobs and gave me a training bra that a 10 year old would wear. Then I get a "kiddie" port. Yes I got a juvenile port. In less that 2 weeks my hair will be gone and I will officially be a baby again. Just think of it as a restart.

    or

    Have fun with the changes and the androgynous look. It made this guy a lot of money in the 80's: 
    http://www.youtube.com/watch?v=JmcA9LIIXWw&feature=related

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  • Paula1231
    Paula1231 Member Posts: 456
    edited October 2010

    Hello August Sisters,

    Haven't posted in a while, but I am keeping up with all of you.  Lago, the photo is great!  Nice to see how you look..georgeous!  All the photos on the site are lovley.  Well, I have a bit of news...my OncotypeDx score is 18.  It is right on the border.  Looking at all the information there would be very little benefit to doing chemo.  I am going to opt out and will take the tamox for five years and pray pray pray.  No news on the thyroid nodule except it looks "cystic" and I have a fine needle aspirate on Monday.  Hoping it is all negative. 

    Only one little bright spot..I will have exchange surgery in November.  Really need something to look forward to as all I do is worry and cry.  Huggs to all. 

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010

    Paula congrats on the low score. Not sure what I would have done if that was my score i got a 31. Did your doctor tell you not to bother?

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    Paula I bet the tamox will do the trick. No need to join Carrol and I in chemo. I will always wonder what my score would have been though. In my case, since Herceptin is automatically given with chemo there was no reason to test me… but this crap better work. I do not want to do this again.

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010

    yeah 3 more times and i wanna be finito!

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  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited October 2010

    Have any of you August sisters regained full motion of your "nodes" arm yet?  Can you raise it all the way up?  My mastectomy was Sept 28, but I read your posts religiously and I have to say you guys are troopers.  Helps to know what's ahead.  My best to all of you.

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  • lovesnature
    lovesnature Member Posts: 82
    edited October 2010

    I do have full motion. I do have a sensation of pulling down my arm, not really painful though. This sensation is also gradually improving.

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010

    my suregery was august 9th and i pretty much do ahve full motion. I ahd some slight cording that a PT worked out for me.

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    I'm doing pretty good on my 10 node side. Not 100% but getting there. I had my port placed on the 4 node side on Monday so I wasn't supposted to raise the arm. I had hold off on physical therapy for 2 weeks because of the port surgery. My 4 node was doing well/ better than 10 node side prior though.

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  • LindaNZ
    LindaNZ Member Posts: 22
    edited October 2010

    Hi

    I almost have full movement - but I only know that it isn't quite there coz the PT measures the distance from the back of my hand to the floor (while lying on my back and stretching my arm out over/behind my head). I've a few cms to go to match the other side. But if I just raise it while standing it feels like full movement.

    I'm really pleased for you Paula. Fantastic news. Hope that thyroid is ok. I am still mucking around with the oncotype test - it will cost me $4000 which is a lot of money. But I think I will do it on the basis that if it is a high score (31+) then the benefit increases to a level that it is worth doing chemo, otherwise I will be skipping chemo - there just isn't enough benefit for me (only 1%) given the risks. Had my rads appointment today - similarly while there is a very close margin the benefit is just too low. So now I just need to find $4000. And hope for a lowish score ...

    Iago, Carole, Tara and Anne - hang in there - it will be all over in due course - I have friends who have been through more chemo than what you are doing and they're just fine now.

    Linda

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  • Paula1231
    Paula1231 Member Posts: 456
    edited October 2010

    Thank you all for the well wishes.

    I truly wish the score was 4 or even 16.  18 is sooooo grey zone.  Still, the risks outweigh the benefit for me.  Carrol, I will see the Onc on the 14th, but the first time I saw her, she said, "what will you do if you are 19"?  I told her I was leaning towards chemo with a 19 or greater, so I am pretty sure she will not recommend chemo.  If she does, I will go for the second or third opinion.  The more research I do, the more the experts say that greater than 30 is the best bang for the buck.  In the grey area, it is unclear just what benefit chemo has if any.  That is scary too, as it is one less thing to fight with.  Also, it is interesting but the test is supposed to give an ER and PR score.  The higher it is the more likely the Tamox will have a maximum effect.  I don't know what my numbers are yet.

    I went for the thyroid nodule FNA today and the dorky pathologist could not palpate the nodule.  He refused to go in blind, so now I have to wait for an ultrasound needle aspirate.  It is the wait that is the worst, but I am hopeful that the nodule is B9.

    I have really good range of motion (surgery Aug 17) but the expander puts a crimp in it all.  It presses against my underarm and feels icky.  I do not have any pain anymore, just a bit of discomfort every now and then.  Lago, Carrol, Tara and Anne, sending huggs your way.  Hoping the chemo will go by fast for you and praying the SE are very minimal.

    Linda, I wish I were Ivana Trump sometimes.  If I were, I would by OncoDx for anyone who wanted one.  You would be first!  Take care and keep me posted.

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  • Pawprint
    Pawprint Member Posts: 464
    edited October 2010

    Hi August group...Its been awhile. I just heard my final surgery to get these TE'S out and implants in has been updated to November 17, 2010. Had cancer tumor marker tests and all was good. Had Liver scan this past Tuesday to see if the tumor in liver has changed...still WAITING for results...always waiting for something it seems. Miss all of you. I am moving very well with no pain. The relay for life went well this past weekend. Our team raised $2,550 to fight cancer. I stayed up 24 hours. I am 56 years young and i haven't stayed up 24 hrs since i was in my 20's. All the excitement was amazing. I hope you all get to experience a cancer relay at some point, its a really good feeling. Talk with everyone soon.

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    ((( waves))) Just a quick hello. Survived chemo #1. 5 more to go. Still have my hair but I fear next Wed/Thursday is will go in a big way.

    Brokendreams, that's awesome. Your team did great. Thank you. BTW I think you are nuts to stay up 24 hour hours but I must admit I did it last November for work… then the boss lays me off in January. Yeah I will never do it again either but for other reasons ;-)

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010
    Day 67 since the surgery, Day 11 of chemo cycle one out of four. Feeling ok today so far. Looks like I am in the clear now. Feeling strong this morning. I am waiting for the hair loss thing too. I am thinking monday will be day 14. I spoke to my hair dresser about shaving it and he said let's wait and see maybe it wont fall out. I am sure it will but ya never know.
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  • Pawprint
    Pawprint Member Posts: 464
    edited October 2010

    It must be so hard going thru chemo and losing your hair. This whole cancer stuff is hard. My heart goes out to all of you brave woman,

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  • Halah
    Halah Member Posts: 352
    edited October 2010

    I wish you guys didn't have to do chemo. I feel guilty in saying that I found out today that my oncotype dx test score was 15 and will not need chemo. I'm glad i won't need it but I wish y'all didn't need it either. {{{{{HUGS}}}}}

    I know it must feel like there is no end. But the chemo will be finished before you know it.

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    So far chemo is not that bad. The NP is another story. Carrol is going to beat her up for me if she continues her bad behavior ;-)

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010

    you got it! I am keeping that can of Brooklyn whoopass ready!!

    Hey feeling more energy today my counts must be going back up. 

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  • Pawprint
    Pawprint Member Posts: 464
    edited October 2010

    cancer doc just called and said Liver scan showed that the liver tumor is unchanged. Good news is it is not a met from breast cancer or the Arimidex would have shrunk it. Now we are down to two possibilities: malignent or benign liver tumor. Still cant biopsy due to its location. So its the waiting game and rescan in 3-6 months. I have no symptoms so i am praying its benign.

    Thinking of Carrol2 and Lago and sending big hugs.

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  • Anne068
    Anne068 Member Posts: 176
    edited October 2010

    I am wondering why I haven't received a PET scan.. is this standard for everyone else?  My nodes were negative, but I also know BC can mests thru the blood... so how can my Dr. say  *for sure* I don't have mests if he hasn't done a pet scan?

     Just wondering if I should demand one... what is SOP for everyone?

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010
    Anne068 I asked my doctor the same thing. They don't do them when the nodes are negative because if it spread from the breast it would show up in the nodes first . . . most of the time. I wanted to get one anyway and asked 3 doctors about it and they all said not to because you would probably find things that are nothing and then they would have to do biopsies and it would be a lot of stress for nothing. Then I found out my medicaid probably would not cover it. So i decided it was ok since three doctors all said it was ok.
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  • Halah
    Halah Member Posts: 352
    edited October 2010

    my bone scan was positive for lesions on my skull and rib cage. So my BS ordered a PET Scan. The PET scan did not find cancer in the bones thank god. I think that was the only reason he ordered the PET scan.

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    I had my scans before surgery. At that time they thought my tumor was 7cm. I also think my surgeon thought there would be a micro invasion (why else would he take out 10 nodes on the left). I was also told that if I did have mets they would do chemo before surgery.

    As you can see not mets but they did see something on my liver so they want to repeat the test after chemo. They really don't think it's anything but want to make sure.

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010
    lago why did the do the scans before your surgery? Did they do more than an MRI? I was also wondering why they took your nodes if the sentinel was negative, or did they not do a sentinel node biopsy? My MRI showed 7cm but the actual cancer was only 1.2 in the end. I feel like something went really wrong there but I saw three oncologists that said that they had to take 7cm because that was the area where the masses were and they can't pick them out individually. I bet they don't think the liver is anything because your nodes are negative. They really stressed to me that it goes to the nodes first if it spreads. But I suppose it's those really small undetectable cells we worry abut and thats why we get chemo.
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  • lago
    lago Member Posts: 17,186
    edited October 2010

    They did a bone & CT scan first because there was time and just in case it spread I would need chemo first. They would have done these scans anyway just not sure when. HER2+ and large tumors have a likely hood of spreading to other body parts. I'm sure that might be it too.

    Yes I had an MRI too. I had a sentinel dissection (4 nodes) done on the right because there were 4 suspicious areas that showed up on the MRI. Ended up a small area of LCIS on the breast. It was the left breast that had the big tumor.

    I had level one nodes removed (10 nodes) on the left. They didn't do a sentinel because the concern was there might be a micro-invasion due to the size and aggressive nature of the tumor. Only way to tell is to take them out and see.

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010
    lago ok i get it now. Sounds like your getting very good thorough care.
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  • lago
    lago Member Posts: 17,186
    edited October 2010

    Yes, excellent care except for Nurse Ratched ;-D I really hope I don't have to switch onlcologists because of her. I trust my oncologist but don't trust her… and she's my oncologists right hand gal.

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