SEPTEMBER 2009 RADS

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  • kawee
    kawee Member Posts: 324
    edited October 2009

    I had my rheumatologist check my estrogen level last week.  Well I got the results back today.  A big fat "0".  Remember, I am postmenopausal, and have no ovaries.  So, now, tomorrow I see the oncologist.  I am going to show him the test and ask him with that reading why I have to take tamoxifen.  It will be interesting what he has to say.

    Titan - not ice fishing, just fishing at a lake surrounded by snow.  We could have fished off the pier here at the beach in shorts, but NOoooooo, my husband loves to fish in the Sierras.  Oh, well, he totally deserves it!!!!!!!

  • MTG
    MTG Member Posts: 646
    edited October 2009
    Kawee - Let's see: You're the one dealing with BC. You went along for a crazy ass vacation. And yet it's your husband who totally deserves it.........THAT IS SO SWEET ! Just the idea that you feel that way makes me smile from each to ear. (I confess, I'm a romantic.) He must really be special and I suspect so are you. Nice.
  • nas14
    nas14 Member Posts: 68
    edited October 2009
    Good luck, Titan! Hoping you get good news!
  • aris
    aris Member Posts: 124
    edited October 2009

    I'm done!!!!!

     I finished yesterday. I have some blistering and redness under my breast and on my node site, but aside from that I'm doing great. Oh, and I'm pretty tired.  I'm so so so happy not to have to go back to the rads clinic. It was a bit anticlimactic today because I had to go for my herceptin dose, so I still had to go to the hospital, but my days are open wide now!

    I. AM.  SO.  HAPPY!!!!!

    :) Pam

  • MTG
    MTG Member Posts: 646
    edited October 2009

    Aris - Thant's great ! Congratulations!!!!  One more hurdle down !!!!! SmileSmileSmileSmileSmileSmileSmileSmileSmile

    SmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmileSmile

    Am I the only September one left ? In any case, I'm just a little behind you 3 more boosts left !

  • lollys
    lollys Member Posts: 205
    edited October 2009

    Looks like everyone is finishing how exciting for all of us --PHEWWW we did it--congrats to us all!!

    I have a question--I know most of you have had lumpectomies but if there is anyone out there who have had double mastectomies   please let me know what your doc. said about follow up tests--Mine said statistics show it doesnt matter if you do  or dont do chest x-rays or bone scans yearly --the outcomes are the same--but he said he would do them as a psychological treatment for me to make me feel better about it--He quoted statistics and articles etc. but I dont know --I am going to have them yearly (for ME) I even asked for a baseline chest x-ray after the rads just incase there might be some changes from that around the lung area--I guess we are left out there to fend on our own a little since we dont need mammagrams anymore --guess pray for the best--

    I start arimedex this week ( maybe tonite if I get my courage up ) wish me luck!!

    stay strong all--Laura 

  • echosalvaje
    echosalvaje Member Posts: 191
    edited October 2009

    WOOOOHOOOOOOOOO I'm DONE!!!!!!

    Bi-lat Mastectomy......check.

    Chemotherapy........check.

    Radiation.........check.

    Living long enough to see if it all worked........priceless.

    Hey Laura, I asked my Doc today about all the screening stuff since I have no breasts to squish in a mammo machine. He said to get real familiar with the chest tissue now so that I can tell if anything changes on my chest wall. Regarding other scans he said that they don't feel that it is called for unless you are symptomatic. So I asked at what point would one be considered symptomatic if I had an aching bone? He said if it was something that was painful in one spot and didn't fade away the way it would if you just injured yourself say, gardening or banging into somethng. 

    So I guess now we're just supposed to get into living and stop wasting time worrying about this coming back...........easier said than done. 

  • Titan
    Titan Member Posts: 2,956
    edited October 2009

    Yay Pam!   You are almost at the finish line Aris...just hop over that line.or do a cartwheel..whatever it takes.

    Echo...you brought tears to my eyes with your post...this is exactly what my onc said too about the scans, symptoms, etc.....I guess you really have to get to know your body...I have also heard that if a pain lasts more than 2 weeks then you had better get it checked out...I don't know about you but I'm a klutz and always running into things and bumping things..then a bruise shows and I wonder how in the heck I got that because I CAN'T REMEMBER DOING ANYTHING!  (chemo?)...anyway..I just watch and hope the bumps, bruises,pains go away.

    Time to party now!  I just can't believe we are all done or almost done with this mess...Back in the spring I thought that it would take forever...and now here we are!  Yay!

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2009

    BetsyBuzz, thanks for putting this thread together.  I came back to report that I am almost three weeks out now and my dirty top layer of skin has been washed away.  I still have a secondary underlayer of lighter tan, but the skin is pretty normal looking, if a little dry (moisturinging, with Eucerin Calming Creme now.)  

    During and after the boosts, I had more shooting pains in my nipple area, but those are gone.  The lumpectomy scar and SNB scar are still a little sensitive to touch pressure.  The minor swelling and edema are gone, too, and I can finally tell that I have ended up with the SAME SIZE on both sides.  I'm commenting on size cause I think Betsy had some comments way back on that, and I could never tell until now.

    Congrats to all of you finishing up in the next few days.  Good Healing to All!

  • lollys
    lollys Member Posts: 205
    edited October 2009

    Echo you brought me to tears  with your saying too!!! __I am going to remember that one YOu are right we have to get on with our life and I agree easier said than do -- I keep on thinking of all the things I want to do now-- more trips to see my grandchildren--more time spent doing the things that are important to us -- worry less about the small stuff-- still feels weird to be done--Thanks  for the info from your onc--mine said the same thing so as the saying goes--it is what it is!!! we have done what we can and now lets get on with it!!!

    TItan-- Thanks for your info too about the follow up--

      I am thinking of back in February and wondering "Now where  was I when I was so rudely interrupted!!!"  Hugs to everyone we will stay strong, Laura

  • Titan
    Titan Member Posts: 2,956
    edited October 2009

    Lollys..you said it..go do the things you want to do..see the grandkids..hug them, love them...worry less....I know that there are threads about being positive..or NOT being positive...you have a choice...not sure if I like the word positive..all I know is that I'm not to going to live ONE day thinking and being down about this CANCER....it does no good...I don't know..I FEEL GOOD...I FEEL HAPPY...maybe I'm stupid but I sure as hell am not going to mope around and ask why me?....Physically..and mentally I feel better now than a year ago...cancer sucks..and we don't know what lays ahead but does anyone?   Love you guys..really couldn't have done with without you! 

  • kawee
    kawee Member Posts: 324
    edited October 2009

    ECHO and ARIS - CONGRATULATIONS!!!!!  What a relief.  You're free!!!!

    MTG - You're next!!!!!!!!!

    I saw the onco today, and was I disappointed.  Even tho my estrogen level is 0, he says I still need to take the tamoxifen.  He said there are still traces that remain that don't show up in the blood.  Oh, well.  It was a nice try anyway. 

  • Rozzy
    Rozzy Member Posts: 39
    edited October 2009

    Hi everyone, I lurk between the Sept and Oct boards.  Had rad #25 last friday and only 10 more to go.  Skin broke down over the weekend and I now have 2nd and 3rd degree burn under armpit and on surgical incision site.  Nipple has 2nd degree right under it.  I told Rad Onc that skin felt like it was pulling and bout ot break last week, he made me a concoction of aquaphor and lidocaine. which didn't help much.  Now he prescribed silvadene (sp) cream 3x daily and told me to take a break from Rads till next Monday to see if the burns heal up some.  Once peeling starts and skin breaks is it safe to assume that rads can continue while they are still healing?  Has anyone dealt with similar situation?  Thanks...

  • echosalvaje
    echosalvaje Member Posts: 191
    edited October 2009

    hey Rozzy, yes, my skin was fine up until #26 then I started to get oozey under the armpit. That's when they prescribed Silvadene. It's just a bad area because your clothes and arm are constantly pulling away the crusty bits and it gets more raw and irritated. I've read in other posts that many women that still have breasts have the same dilemma underneath in the crease. I guess I can say one of the perks of no longer having breasts is that I don't have to agonize over what bra is less painful to wear as the skin breaks down.

    My doc said to let plenty of air get to it so I've been wandering around the house shirtless with my arm up looking a bit like a pelican airing out on the end of the dock. Keep putting the medication on. It's a slow process but just one more that we will overcome  ;)

  • MTG
    MTG Member Posts: 646
    edited October 2009

    echosalvaje - Great attitude in the face of pain and discomfort. I'm laughing  like wild at the image, esp since I too will sometime strike that pose. Never thought of the analogy.

    Kawee - Hey, asking the docs never hurts; like you siad , you tried. I'm researching Tamoxifen like mad cause I'm supposed to start soon. Can you tell me why you'd prefer an AI to Tamox ? I was under the impression AI's had MORE side effects. (Haven't looked into AI's yet but certain things about Tamox scare the hell out of me, e.g while we cut the likelihood of  ER+ BC recurrence in half, we double the likelihood of uterine cancer. Kindof sounds like a draw to me.) Advice ?

  • lollys
    lollys Member Posts: 205
    edited October 2009

    Hi Kawee and MTG I am going to chime in here abut Arimidex and Tamoxifen--I was under the impression that ARimidex is for postmenopausal women--if that includes you the info I got was that it was better than Tamox BUT--there are side effects with both -- a lot with each --tamox has been around a lot longer-- tomax makes your body think it still has estrogen ( that is why there is endometrial thickening and risks of uterine cancer --and some other side effects--Arimedex actually binds the estrogen( not exactly the mechanism but if you look on the arimedex site it does explain it in more detail) anyway your liver and adrenal glands still produce some estrogen --arimidex prevents that and so we will not have any estrogen floating around--so there are side effects from that too-- bone and joint pain osteoporosis weight gain and from i have read which is scarring the daylights out of me other  SE's too--I was supposed to start on ARimidex last night and i got freaked so I will start tonite--My doc said if I get too many SE's he will change to another type of med--A women in my exercise class has been on arimidex and except for minor joint pain she is doing fine--I also have to start on Fosomax to prevent osteoporosis--For someone who has been very active(runner Pilates etc) and would only take a tylenol once in a great while this is freaking me out--I dont know why your doc is is suggesting Tamox over Arimidex but maybe he is more comfortable with the old drug and has seen a lot of SE's with ARimidex--it would be worth asking him that !!! Another #@$%-ing decision-- I want to live long with Quality -- I dont want to worry any more --will let lyou knowwhat happens once i start on this 

    hope this helps and doesnt freak anyone else out--Laura 

  • kawee
    kawee Member Posts: 324
    edited October 2009

    MTG and LAURA - The only reason he's prescribing tamoxifen is because I have Lupus.  I already experience body pain, fatigue, dryness, etc.  He says he thinks the "other" drugs will have too many side effects for me.  He said we'll see how I do on tomoxifen.  My tumor was 1 mm invasive DCIS with 1% ER+/PR+.  My sister takes Femara and she says she has body pain and fatigue.

     We'll  see what happens.  I guess I'm going to start soon. 

  • MTG
    MTG Member Posts: 646
    edited October 2009

    Laura - I'm pre- menopausal but one med onc suggested Ovarian Suppression (Lupron) and an AI rather than tamox. I truly respect her intelligence but she's very aggressive when it comes to BC; would have had me do Chemo. Another suggested Tamox but seems more concerned about research than individual issues and besides I'm scared of trading one cancer for another. Seeing a third one in two weeks .

    I feel like Goldilocks....one is too hot (to do anything and everything possible; too extreme for me), one is too cold (I suspect prefers more interesting cases and studies), hoping the 3rd will be" just right."

    Kawee - I guess we'll see what happens together. To be continued

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited October 2009

    Ladies - I am 3 weeks out of rads and my skin is healing nicely and I feel fantastic.

    I have to chime in re the Tamoxifen because I was TERRIFIED beyond belief about it. I read all kinds of stuff on this board about women turning into monsters, throwing things, becoming suicidal, all kinds of terrible things. I was absolutely horrified about it.  I went to the cancer psychologist and dragged my poor DH along to strategize on how we would handle it if I became that way (because it is so opposite the way I am now), and we roleplayed on what we would say, how we would handle it if I started screaming and crying for no reason.  This is the end of my 3rd week on Tamox and I have not noticed ANY side effects at all.  I have some hot flashes but i had them through chemopause and they are not any worse.  No mood changes or anything else at all. Needless to say - I am very relieved (and so is my husband!).  So just remember that the women who HAVE SE's are more likely to post them. The women who don't are probably not even looking at those topics because it isnt' a concern to them.

    AND yes, the Tamox does double the risk of uterine cancer but it was a VERY small risk and therefore remains small even when doubled. But the risk of recurrance of bc is larger, so cutting that in half is more significant. It isnt' just an equal trade off. Or at least that is how my oncodoc explained it to me.

    Also, I take DIM and Maitake Fraction supplements which work on your estrogen and on inhibiting the growth of tumor cells so I am hoping they help protect my uterus.

    CONGRATULATIONS to those of you finishing up.  Sometimes I can't quite believe all we have been through. We are strong, courageous women and we have been through an ordeal and lived to tell the tale. We should be very proud!
    Amy

  • MTG
    MTG Member Posts: 646
    edited October 2009

    Amy - Thanks for the input re: bc vs. ovarian cancer percentages. I'm definitely hoping I got the wrong impression re %s and plan to ask both my med onc and surgeon about them. As for the other SE, I (of course) dont want them but they dont terrify me. For me, the scariest ones are gynecological; taking a perfectly healthy part of the body and messing with it. I guess we each have our own Achilles heels. I also plan on asking my docs if I do have problems and stop the tamox does that body part go back to normal or could it be irreparably damaged. Maybe close monitoring will be the solution. To be continued.

    Now on to something fun. Counting down 5 days of boosts by bringing in breakfasts  to radiation- muffins and scones, tea cookies, bagels, and tomorrow is French Pastries. We've been having lots of fun. Monday, the last day, I'm planning on making and bringing a Boob Cake and possibly Boob cupcakes. Wierd but should be fun. I think we'll all fall down laughing ! I just hope the molds I ordered arrive; the lady promised but still....

  • Titan
    Titan Member Posts: 2,956
    edited October 2009

    MTG...just hearing about that food makes me hungry!  Can you send some over to Ohio..please!  I still have the ravenous appetite from rads...I used to watch what I ate...no more..I just eat!  And exercise alot!  I'm not close to being overweight..yet...but it may be coming!   Boob cupcakes sound soooo good!   Just don't decorate them with pink!  HEE HEE!

  • MTG
    MTG Member Posts: 646
    edited October 2009

    Titan - The staff has said I'm making them gain weight. I say turnabout if fair play; since I gained weight during rads, they can too !!!!  As for the cake and cupcakes, I had an oddly fun time today going to a huge candy store called Dylans and buying candy "nipples" - I think red haribos or rasberry jellies will be the best but I bought gumdrops, candy sombreros, hot tamales and other possiblities. I was relieved when the cashier didn't ask why all my candy was red and  shaped like.....

    Anyway, like you, my healthy eating had become junk food and chocolate binges. I've eaten more crap in the past 2 weeks, then in the last year !!! Special K whole grain crackers and Tasty D lite used to be "treats" for me. And while I used to walk 4.5 miles several times a week at a good clip, I now walk less distance and lots more slowly. If I dont do something,soon my clothes wont fit !!!!

  • kawee
    kawee Member Posts: 324
    edited October 2009

    Hey, I thought it was just me.  I've gained 8 lbs.  since all this started.  I've noticed my appetite is decreasing a little, but my walking has also been cut way back.  I am trying, but so far haven't been doing very well.

    MTG - Guess I could have mentioned that last March, 9 of my high school girlfriends (we only see each other every 3 years) flew from different areas to Las Vegas for a few days to see Cher.   Also, in July I went with friends to the International Quilt Show in Long Beach, so my poor husband has just been working and he has been so supportive and worried so much I thought he deserved a fishing trip.  You're  right, he is special and thank you for the nice complement.

    When is your last day, tomorrow or Monday? 

  • MTG
    MTG Member Posts: 646
    edited October 2009
    MONDAY !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I need the weekend to bake and decorate  the boob cake Hee, hee.
  • lollys
    lollys Member Posts: 205
    edited October 2009

    MjTG--I loved going to Dylans!!yum!! I know how you feel about the exercise--I used to run 3-4 miles 3-4 times per week- mow it is all I can do to walk a couple of times a week --but we need to keep it up and it will come back!!(I keep telling myself that) --you need to take a picture of your cupcakes--they would make us all laugh--such a cute idea!! have a good weekend --Laura

  • Titan
    Titan Member Posts: 2,956
    edited October 2009

    I'm somewhat sad today...can I say "a friend" died this week...not sure exactly what type of cancer she died of..but cancer is cancer...I met her through her husband who both my DH and I knew years ago...I met her at the cancer center the FIRST day of my chemo...she was sooo sick..taking rads and chemo...everywhere....but she was so supportive of ME..the newbie...a few weeks later her DH popped his head into my chemo room and said that there was nothing more that could be done for her..of course I started freaking and the nurse with me told me that they "got her too late"...don't know any of the details...but I do know ..I was amazed that both her and her DH were hugging me....and so supportive...when she was the one that needed the support..I tried to give back what I could..I just hoped and prayed for a miracle for her....if you have second...pray for Susan and her family...thanks

  • kawee
    kawee Member Posts: 324
    edited October 2009

    TITAN - Will do!!!!

  • lollys
    lollys Member Posts: 205
    edited October 2009

    Sorry Titan--Cancer sucks--i too will say a prayer--

  • Titan
    Titan Member Posts: 2,956
    edited October 2009

    Thanks everyone....on another note..I'm having a mammogram on Monday..then meeting with the BS on Thursday, and the rad onc too!   I didn't have to go to the specialty center for 3 weeks!  That was sooo nice!  My question is..what is your next step from here?  Is anyone else having a mammogram?  I keep thinking that this is somewhat of a "baseline" mammogram because obviously my right breast has changed in the last months!  I'm sure it doesn't look anything like it did one year ago....I just hope I don't have to have any freaking biopsys for awhile!

  • kawee
    kawee Member Posts: 324
    edited October 2009

    TITAN - Well, Wednesday I went to the oncologist,  Thursday to the Rad oncologist and this coming Tuesday to the breast surgeon.

    The Rad onco told me he wanted to see me again in 6 months and we was scheduling my mammogram for February.  Said he liked to wait 4 months after Rad to do mammogram.  I was surprised he was the one to schedule it.  I'm going to ask the breast surgeon on Tuesday about that, I would have thought she would do it.  Anyway, the regular oncologist said I don't have to go back to him for 3 months.

    Who scheduled your mammogram? 

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