Has anyone done MammoSite Radiation Therapy?

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  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited October 2008

    Gals,

    I had a SNB as well as a lumpectomy on Oct. 2. The staples have been removed. I had 1 lymph node removed and it was negative. The scar is not not right underneath my arm, however, when can I use deodorant and when can I shave under my arm. 

    Thanks for all of the guidance.  Linda

  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    Linda, for precautionary measures against lymphedema, you will find many threads on this site.  I personally began shaving and using deodorant again on the affected side as soon as my skin could tolerate it.  Some women opt to use hair removal creams versus a razor. 

    GRRRRRRRRRRRRRRRRRR for boobytrapped's situation.  I'm so sorry that happened.  There but for the grace...  Thursday (day after tomorrow) go I ...to have the balloon inserted.  CT immediately after to see placement status.  Then... 2x/day M-F next week of Mammosite radiation.

    I'm scared, but I know I'd be scared if it were external beam, too.  So, might as well get on with it.

    I'm also concerned about how I'll manage getting to and from work and the doc's office twice a day.  But hey, it's only for a week.... IF all goes well.

    All the best to all of you!

  • kdeit
    kdeit Member Posts: 209
    edited October 2008

    As long as your incision is totally healed, I think you could shave and use deoderant now, but if you have any doubt, please call and ask your doctor. 

    Hugs,

    Karen 

  • KAK
    KAK Member Posts: 1,679
    edited October 2008

    Linda, I'm sorry to hear about all your family being stalked by BC.  I can't imagine how that feels.  I'm so far the only woman in my extended family to have bc & I hope it stays that way.  I have two good friends who've lost sisters/mothers/aunts to bc.  Hope you make it through all this.  I'm glad you're mom is still kicking.  That must help a lot.

    Karen/Boobytrapped!!   PM me, my friend, if you want.  Like Karen/Kdeit said, I couldn't get MammoSite either due to balloon issues, but I did the 3-week Vancouver protocol, which was so much easier to take than the 6-week.  I'm on the September rads thread & my skin issues have been much much less problematic than the gals there who've done the longer protocols.  I was very tired during the 2nd & 3rd week, so don't expect to be good for much else most days, but I also had come down with a bleeping sinus thing & had to go on keflex.  There are at least 3 of us in the September rads group, tho', who caught that bleeping thing, & the other 2 had longer protocols than me, so I think rads just lower your resistence for a bit.

    Also, there are some women here who've done an external protocol that's like MammoSite in that it's 5 days, twice a day.  They've had good experiences with it.  If I find their posts again, I'll put the link on here.  My rad onc was concerned about the toxicity of that protocol but the gals here who've done it had no big complaints.  Your immediate SE's (skin/fatigue) will probably continue on for 3-4 weeks afterwards, but you'll be DONE with getting rads really fast.  So, ask your rad onc about that one, too, while you're at it.

    Kdeit, I'm feeling much better, by the way.  Thanks for asking.  Started back to work two days ago & did okay.  Felt good, actually, to be useful again & to help someone else for a change.  I'm planning to get to work on my 2009 calendar soon!  Going to shoot some autumn foliage this week, I hope, so will think of you while I do.

    Kathi

  • kdeit
    kdeit Member Posts: 209
    edited October 2008

    LindaBusEd - check your PM's - I sent you a private message about your trip to Orlando.

    Hugs,

    Karen

  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited October 2008

    Hi boobytrapped,

    I'm soooo sorry to hear you can't do the mammosite. I know everytime before each treatment twice daily I had to had CT scans. I finished last week but now having problems fluid build up where my lymph nodes were removed and have been drained twice already. Probably will again tom. and Friday. Haven't even seen the Medical onoc. yet but I know I will be having Chemo. Bummer.

    Jerri

  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited October 2008

    Boobytrapped,

    I just thought of something. My doctor used this New Ballon called Contura (I think) which is bigger and better results for the mammosite. You might ask about this.

    Jerri

  • emath
    emath Member Posts: 92
    edited October 2008

    Good evening ladies! Linda after my SNB and lumpectomy I was told not to shave for about a week, but my scar was right under the armpit and I could not shave for about 2 weeks and that drove me nuts! As for doedorant they gave me this spray called Naturally Fresh Deodorant Crystal Spray Mist. You can buy it at CVS or Walgreens. It just keeps any ordor away. I was told to wear it for 4 weeks.

    (((((((((((((((((hugs to all)))))))))))))))))

  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited October 2008

    kdeit.

    Thanks. Got your PM; check yours. Hope everyone has a good day today. I can't seen to sleep all through the night. Go to the doctor (BS) Thursday. I hope he has the results of my Ocontype test!

    Linda

  • boobytrapped
    boobytrapped Member Posts: 61
    edited October 2008

    Thanks ladies for all the support. This stuff stinks. I actually had the Contura, not the Mammosite balloon, because they thought it would fit better. Had the balloon removed yesterday without any real problems. Rad onc numbed me up a little before hand as I was so anxious about it hurting. He seems to think the balloon burst too which I don't understand at all and put me on an antibiotic. He gave me an option of inserting another Mammosite which is in a football shape that he thought might fit better but to tell you the truth, I just can't face having another inserted and then removed. And I really hated the feel of the fully inflated balloon and the catheters hanging out. But I was willing to do almost anything to get over with in 5 days. Just not an option for me now. I've talked to the onc about the 5 day Canadian treatment but he didn't seem to know much about it but maybe I'll try that tact again. For now, I don't have any more appts for at least a week and rad onc appt is in 2 weeks.  I'm going to take a cancer vacation for awhile.  Thanks again all for your support and suggestions.

  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited October 2008

    Hi boobytrapped,

    I'm so sorry you couldn't do the MammoSite. I will say it is good they do CT Scans before each treatment. I had the Contura and was lucky because barely got it since the tumor size was 2.8 and the cut off is 3cm. I've never heard of anything about the Canadian tx. but worth checking it out. I don't blame you wanting to try putting another ballon in. It sure hurt more going in than out and I wonder if it would have cost again for another one. Anyway Enjoy your time off. I get a time off before Medical Onco. and then Chemo. then probably Tam.

    Jerri

  • KAK
    KAK Member Posts: 1,679
    edited October 2008

    Boobytrapped, check page 7 on this thread.  That's where I put a link on my 9/27 post about the 5-day twice a day external beam therapy, so you can tell your onc about it (they do it at a bunch of US places) & there are posts right after mine from some other women on here who've actually had it.  The Vancouver protocol is the 3-week once a day one that I had, which had a post on the bc.org home page here a few weeks ago when they published their 10-year study.

    Oh, how I can relate to taking a cancer vacation.  Going back to work this week has actually been a cancer vacation for me!  I get to be something besides a cancer patient for a change!  And I'm deliberately not starting Tamoxifen until next week so I can have a break before starting yet another phase in this long treatment adventure!

    So, do something nice for yourself while you're off.

    Kathi

  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    Hi all.  Went to have my IV sedation surgery to have balloon installed, and .... the surgeon said he wanted me to have general.  I was disappointed and wanted to find out WHY his nurse told me IVA, but... rather not upset him before he does the surgery... !  It went fine.  That was Thursday, and Friday morning I drove myself to have a CT for placement purposes for the clinical trial I guess.  Placement was good.  BUT yesterday I got a call that the paperwork was not all done, and so instead of starting rads Monday (tomorrow), I start Tuesday and end next Monday.  Whaaaaa?  Gr..........  The incision pain is minimal.  He used the same incision line, and then the tube thing sticks out the side.  It's weepy but not infected and not too bothersome.  Nurse was smart -- pulled off all the tape and told me to use gauze pads with one large gauze pad on top held in place by my bra so no tape to irritate my skin.

    That's my report.  Hope it helps someone out there.

    Happy weekend!

  • kdeit
    kdeit Member Posts: 209
    edited October 2008

    Sheri,

    The one thing that really bothered me about my balloon insertion was that my surgeon merely "numbed" the area and then made a totally new incision for the catheter.  She either didn't wait long enough for the shots to take effect, or I needed more shots, because I definitely felt it, so even though your surgeon used a different method than you had expected, I'm glad that you didn't feel anything.  And your nurse was very smart to give you that tip!!

    LindaBusEd - please check your PM's - I'm not going to be here when you are in Orlando, after all.  My 6 year old granddaughter has to have surgery Friday so I'm driving to Atlanta Wed. and will be there a week to 10 days.  Have a great vacation, and don't get too scared at Universal's Fright Nights.  The billboards advertising it are really creepy.

    Hugs,

    Karen

  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited October 2008

    I will have day surgery next Thursday (30th) for my catheter.

    Karen, hope all goes well with your granddaughter. In fact, I am only 2 hours from Atlanta.

    All take care, Linda

  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited October 2008

    Hi LindaBusEd,

    I bet you will be Glad to have that Ballon in and Gone soon. Are they going to give you Local Anth. or will you be sleepy?? When will you hear about your oncotype?? Sorry about All of the questions. I'm waiting on mine as well and then see the Glorious numbers. My husband is a numbers person. Sure not me.

    Jerri

  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    FTR, I was Oncotype 18 and decided not to do chemo.  GRRRRRRRRRR that I have lost another day with this thing in me and no rads -- some paperwork thing with the clinical trial... I dunno.  I THINK and HOPE I start this afternoon.  Then what?  I guess I skip the weekend and just do 2x/day starting Monday again>???

  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited October 2008

    Pinkladdy,

    Don't know yet how I will be when the catheter is put in but I kinda think I will be kinda aware as they are to do the day surgery thing at 7 am and I have an appt. with the onco. radio. at 9 am (across the street).

    I go to day surgery registration Monday--I am definitely going to ask!!!! After registration, I go see my surgeon--he will tell me. (I might have to take a double dose of my blood pressure medicine!!!) Hopefully I will get my results of my onco test Monday. I am kinda stressing on this!

    All take care, Linda

    PS: Vacationing in Orlando this week--weather is beautiful!!!!!!!!!!!!!!!!!!!!!!!!

  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    Question for anyone who can give insight.... How much drainage/leakage did you have?  Did it come from the "hole" where the tube comes out or from the tube itself?  Was it the whole time or just in the beginning?  Clear or slightly colored?  I'm wondering if I'm leaking or infected... and HAVE NOT STARTED YET because of paperwork issues in the protocol for the clinical study.  Yes, I'm jumping up and down, but... I cannot start yet.  Today makes a week this thing's been in me and I have not had the first treatment.  I don't even want to schlep over to the doc's office for them to tell me it's fine and not treat me.  I cannot get a grip when I think about this.  Having this thing sticking out of me is driving me a bit batty.

  • kdeit
    kdeit Member Posts: 209
    edited October 2008

    (((((Shari)))))

    I'm so sorry that you are having to wait so long to begin your treatments.  I did have leakage, quite a bit, that seeped around the catheter tube, from the incision.  It seeped so much at one point that my sister-in-law, who is a nurse, suggested that I put a period pad over the incision area so that it would be absorbed better.  It was a pinkish/red color.  If you are in any doubt at all, please go ahead and call your doctor - you don't want to take the chance that you might have an infection.

    I hope you'll begin your rads soon.

    Hugs,

    Karen

  • shari1232
    shari1232 Member Posts: 161
    edited October 2008
    Thank you so much, Karen!  Your post made me feel better!  So did going to the docs this morning and having her tell me it was normal and not infected.  No...... she still can't treat me until the final go-ahead from the clinical trial people.  BLAH.  I actually lined my bra with panty liners, but it still seeped through!  Ick!  I'm going for the major league Kotex when I run out of the stuff she gives me next time.  Undecided
  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    Got the call yesterday afternoon.  Had my first tx this morning.  No pain.  A little scary, but that's it.  Back this afternoon.  They are going to treat me over the weekend.  Yay!!!!  Two days I don't have to take off twice from work and run back.  And no rush hour traffic!  One down, nine to go!!!!

  • kdeit
    kdeit Member Posts: 209
    edited October 2008

    Shari,

    That's great that you finally got your first treatment and that you can have rads over the weekend!!  It'll be over before you know it!!

    Hugs,

    Karen 

  • TigerLily4
    TigerLily4 Member Posts: 22
    edited October 2008

    I am so very happy to find this site.  I had my partial mastectomy October 7 and go in for my balloon catheter implant October 31, with the treatments November 3-7.  I will be reading everyone's experiences with great attention.

    One reason I believe a lot of people don't have the treatment (as well as the narrow parameters for qualification) is insurance companies.  My insurance company refused the treatment as experimental.  If my office had not gone to the insurance administrator and convinced them to change their mind, I would not have been approved for the procedure.  In fact, it was delayed a week because of the insurance company.

    The cost is approximately the same as traditional 33 treatment radiation, so I'm not sure why the insurance companies are so reticent to approve the MammoSite.  It was FDA approved in 2004.

    My understanding is that the procedure is done optimally within 3.5-5.5 weeks of the surgery.  They can do it up to 7 weeks after the surgery.  In time the cavity will close so they need to do it before that happens.

    If anyone else is having insurance issues and wants additional information on what I did, please feel free to post or send me a PM.  I'm new to the site so I'm not exactly sure how to do that, but I expect I'll figure it out.

    Susan

  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited October 2008

    TigerLily,

    I am suppose to have my balloon put in on the 30th and will probably have my treatments the same week as you. Are you going to have to have chemo?

    Linda

  • TigerLily4
    TigerLily4 Member Posts: 22
    edited October 2008

    Linda

     I find out Monday about the chemo.  I'm part of the TailorX study so we'll get the oncotype DX (I think that's what it's called) results Monday.  Are you having chemo?

     Sounds like we'll be able to compare notes as we go.  All the best to you as we start this new journey.

    Susan

  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited October 2008

    Tigerlily,

    I should know the results of my oncoltype and BRAC tests on Monday. Will let you know what he tells me.  Linda

  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    Best wishes to both of you, Tiger and Linda!  I have now completed 4 tx out of the total 10 (twice a day for 5 days/10 treatments).  The procedure itself is not painful at all.  First they take an xray to make sure the placement and all is well with the balloon.  Then they take a long tube that runs from the "radiation giver" machine to the tube hanging out of your breast.  Once it's hooked up, you hang out there for less than 10 minutes while the machine, operated remotely, sends the seed down the tube and into the site and then retracts at the end.  Once you're done, the radiation is back in the machine... no seed is left in you... and they check that with a geiger counter.  So holding babies and kitty cats is ok afterwards... and no glowing...  There's a bit of noise as the machine does its thing, which can be unsettling, but none of it hurts, and it only lasts about 6 minutes.

  • TigerLily4
    TigerLily4 Member Posts: 22
    edited October 2008

    My Oncotype DX came back a 10, so definitely no chemo.  I'm also remaining in the TailorX study.

    Linda - hope your results are good, too!

    Susan

  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited October 2008

    BRAC test showed no mutations

    Oncotype DX showed a 34% recurrance--most likely chemoCry

    Mammosite on Thursday (at least I will be put under); 2 hours later an appt. with radiation dept.

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