Has anyone done MammoSite Radiation Therapy?

jackieinbama

Hi all.  Hope all are doing well.  Sorry I haven't replied to anyone this past week.  I've had a really bad week.  My stepfather was just diagnosed with stage IV mantle cell lymphoma and will be hospitalized tomorrow for at least a week for his first chemo treatment.  My dm is taking it really hard as we watched my father die from an extended illness.  Now she is facing this with my sf of only two years.  He had his biopsy on their second wedding anniversary.

MAA123, thanks for asking about me and blood tests.  All came back normal thankfully, however no answers to my medical mysteries.  Medical onc suggested going to Mayo Clinic for a week for extensive testing however, finances and family situations won't allow that just yet.  You mentioned being er/pr-, are you also her2-?  Tamoxifen was no picnic for me, but will look at going back on it this month since I'm through with testing.  Sorry your options are limited by this.  If you are her2- you might want to check out the triple neg. thread here.  There are alot of women that know alot about it there.

Gilda, hot flashes are the worst.  While on Tamoxifen I seemed to have one continuous one.  My family nearly froze because I would turn the heat/ac down so low.  Not looking forward to that again but will suffer through if needs be.

Bras are another story.  I still can't handle an underwire and nothing with a seam.  I am currently wearing a cotton Bali that really doesn't give much support.  I am able to wear it for a few more hours now though.

Karen and Sue, sorry you both are dealing with osteoporosis on top of everything else.  The treatments for it do not sound like much fun to me.

Hope all of you have a good week and those still healing are doing well.

Jackie

MAA123

Jackie,

So sorry to hear about your step father.  What a shock that must be for everyone.  Well, you know a lot more than me about this ER/PR neg and HER2.  The nurse said there was a comment HER 25%.  What the heck does that mean?  I don't know what I'm dealing with here. Totally ignorant.  I will look for that thread.  Thank you.    

Karen, Here's a link that I found some good info at about diag for ER/PR neg. www.breastcancerupdate.com/bcu2004/7/allred.htm

This one: Long-term Clinical Outcomes in DCIS

www.medscape.com/newarticle/447028

 Take care all.  Marty (be nice if you knew my first name!!)(MAA123)

PS. Whatever you do, don't do the Black Cohash for hot flashes.  Not recommended for people who've had BC. We have the privledge of suffering silently!! hahahahah. Bought a small fan @ Wal-Mart with a large clip on it. I have it attached to my window sill next to the bed.

IT HELPS A LOT!!!!   Not up all night. Bye for now.

jackieinbama

Marty, If you are Her2+ then you have the option of having the Herceptin treatments to help prevent against recurrence.  Your onc will be able to fill you in on that.  That is probably why your surgeon is sending you there.  Hot flashes are the pits.  Glad you found a fan to "chill out" with. Ha (I know, I'm not funny)

To everyone else, hi to all, hope all are doing well.  Gotta go fold laundry, ugggh.

Have a good day,

Jackie

MAA123

Jackie,

Triple Neg. ER/PR/HER2 neg.  I'm having it all retested and should know something in about 10 days. As it stands now, there is no

treatment plan. Hope your mom is Ok. Talk 2 u later.  Marty

jackieinbama

Marty, I'm so sorry to hear triple neg.  Not because I think you have anything to worry about but because I know that having continuing treatment options offer a sort of peace of mind.  I am not currently taking a hormonal at this time and know that I have those reccurence thoughts that slip into the back of my mind.

Will you have genetic testing and are your docs recommending hysterectomy or oopherectomy?  I have heard that some triple negs do this.  Have you checked out the triple neg board? 

Hope you are doing okay and find out more with having blood work done again.

Thanks for asking about my mom.  She is holding up okay.  My stepfather just came home from the hospital from his week of chemo.  He will be going back in the hospital again in two weeks for another round.  Onc told him if he lives through the chemo he has a chance at remission.  We're praying for the best.

Karen, Gilda, if you're reading, how are you doing?  Hopefully back to your normal activities. 

Hugs to all,

Jackie

MAA123

No recommendations on hysterectomy or anything else. The labs will be redone from the slide-... Whatever happens, happens.  I'm not overly concerned right now. As long as your SF has the ambition and courage to continue, that's half the battle. It's when you give up that it falls to pieces. Keep encouraging him. He needs some positive to get him thru every day  I have a friend who's a certified tumor registrar. She's bright and on top of things and she is reassuring me that I have nothing to worry about, particularly since I had the radiation. I feel safe in my heart, if that makes any sense. Just a gut feeling it will be ok.  I think I have a lot of faith, and when it faulters, my husband kicks my butt!!   I hope you are doing ok.

jackieinbama

Marty, read back what I had written to you and didn't mean to be a downer.  I am sure you are going to cancer free forever.  You have a super attitude, strong faith and sounds as though you have a great support system. 

I am doing okay.  Last month I had a bit of a scare.  Found a lump in non bc breast and some thickening in bc breast.  I had mammograms and ultrasounds and all was okay.  Seems that the nine months that I took Tamoxifen caused breast to become fibro cystic. So all is okay. Then with sf getting dx, just makes me a little paranoid I guess.  But your words have made me look at things in the right light again.  It is what it is and I have to take one day at a time and not let myself get worked up over every little pain or lump.  Thank you for that. 

I do have a great support team, but all are dealing with their own issues currently.  DH had two surgeries to cervical spine in Feb. and was left without the use of his left arm and he is left handed.  He is out of work and currently awaiting SSDI.  I haven't worked since 2005 and am waiting for appeal with SSDI.  I do not have a diagnosis for my medical issues so is alot harder to get disability that way.  My dd that lives with us has an immunodeficiency problem and is being treated with major antibiotics to try and deal with the constant sinus infections she gets.  Good news though is my ds is getting married next month.  We're excited about that.

Didn't mean to be so long winded.  Thanks for listening.  You've really helped me today.

Thank you and hope you have a good day today.  By the way.  Where do you live?

Jackie

MAA123

So glad I could return it.  So you are off Tamoxifin and taking nothing for now? I dreaded taking that stuff. Since I quit hormones, I've lost 7 lbs w/o trying!  I'm sorry you are battling the SSI nightmare. My older sister took 3x before she went before a judge and got it. She had multiple things that made it impossible to work. She's deaf in both ears..blind in one eye...90,000 operations in her lifetime, 5 of which happened a week after her 3rd marriage. Her new husband should have got a warranty! She really didn't have a dx, just falling apart!!  Have to laugh about it.  

Dwelling and worry is negative karma! You have angels watching over you, so let them take your burden so you can live your life to the fullest.  I look at it this way.  If it comes back I will have plenty of time to think about it and dwell.  This time now is my recess at the playground and I'm not coming in til the bell rings!!

I'm in south FL.  A yuk town called Fort Pierce. Love my street and my house, but would rather live in another state. When the market turns around (if it ever does), we will be packing up and heading north somewhere!  Looking forward to it.  Hugs, Marty

kdeit

Hi Ladies,

Marty, thanks for the links to the ER/PR neg info.  Please be sure to let us know what the results are of your retesting.  It sounds as if you've got some really good support from your friend and dh.

Jackie, I'm so very sorry about your SF.  How is he doing?  One of my brothers-in-law was diagnosed last October with small cell lung cancer, and brain and liver cancer and has had several rounds of chemo and had radiation treatments since. Some of his tumors have shrunk and some have stayed the same, but have not grown any.  He's feeling good and able to do quite a bit, so I'm hoping that your SF will have the same good or better results with his chemo.

And I hope you and your DH are approved for SSD soon.  My DH had to take medical retirement about 10 years ago due to severe heart problems - we were lucky in getting SSD approval the first time, but I have heard a lot of cases get denied  and then you have to fight. Doesn't seem right. 

Oh, I almost forgot - Marty, I live in Florida, too.  In Kissimmee, which isn't far from Ft. Pierce.  I'm sorry you don't like it there - We moved here from Indiana 36+ years ago, and I don't think I could deal with a real winter any more.  I freeze at 60 now.

We have a sailboat that we keep in a marina on the Indian River in Melbourne.  I think Ft. Pierce is about an hour from there - by road.  By sailboat more like 9 or 10 hours, .

My oncology appt was postponed until this coming Monday, so I still don't know what I'll be taking.  How long did it take for everyone's catheter incision to totally heal?  Mine is still yucky looking and sore, and my other incisions are still sore, too.  I put on a regular bra Thursday to attend a funeral, and it was doable, but still not comfortable.

 I forgot the shuttle was landing this morning - just got the sonic boom over Kissimmee - made me jump a mile!!

Hugs,

Karen

kdeit

Hi,

Just thought I'd let you know that I'm being put on Arimidex.  I discussed my fears of it, due to my severe osteoporosis, but my oncologist convinced me that he'd keep a close eye on my bone density.

But - after reading through all of the possibly side effects, I'm not going to start it until I'm back from visiting my daughter in Atlanta.  I'm driving up there this coming Sunday and will return the following Sunday.  Sure don't want to be dealing with a new med while on the road.

Hope everyone is doing OK.

Hugs,

Karen

gg44

Hi all, I have been off line for awhile due to no Internet at home at this time. I am glad everyone is doing ok. Jackie sorry to hear about your SF. Hope he is better. I have been told that I am breast cancer free but, I have a large pelvic mass measuring 25 cm x 22 cm x 16 cm. in inches that is roughly about 10 inches x 8 1/2 inches x 6 inches. I go for surgery on the 3rd of July. I look and feel like I am 6 or 7 months pregnant. This waiting is starting to get to me!!!!! Oh well enough about me. Catch you guys later. Gilda

MAA123

Gilda,

So sorry about your diagnosis! My God, you poor thing! Who diagnosed you, GYN?  Did you have other symptoms besides feeling larger than normal? 

Karen, my surgeon was going to put me on Armidex or whatever it is IF I was ER/PR +.  My cath incision healed overnight!  Not a problem at all. To this day it gets itchy. I was surprised since the Rad. Onc. literally ripped it out of me!  I had no healing problems at all except for rad. burns.  That was the hard part for me.  Even wearing a seatbelt now is annoying.  Would rather not wear it.

I'm waiting for retest results. Probably hear this week. Hope Atlanta is fun!  We have a pontoon boat we take out in the intracoastal and the river.  It's fun.  The northern cold is not for me either, but the Carolinas would be perfect for us.  My dream to move up there. Best of all worlds. Jackie, hope u r doing OK. Haven't heard from you lately.

MAA123

Gilda,

So sorry about your diagnosis! My God, you poor thing! Who diagnosed you, GYN?  Did you have other symptoms besides feeling larger than normal? 

Karen, my surgeon was going to put me on Armidex or whatever it is IF I was ER/PR +.  My cath incision healed overnight!  Not a problem at all. To this day it gets itchy. I was surprised since the Rad. Onc. literally ripped it out of me!  I had no healing problems at all except for rad. burns.  That was the hard part for me.  Even wearing a seatbelt now is annoying.  Would rather not wear it.

I'm waiting for retest results. Probably hear this week. Hope Atlanta is fun!  We have a pontoon boat we take out in the intracoastal and the river.  It's fun.  The northern cold is not for me either, but the Carolinas would be perfect for us.  My dream to move up there. Best of all worlds. Jackie, hope u r doing OK. Haven't heard from you lately.

jackieinbama

Thanks you guys for asking about me.  Sorry I haven't posted.  I just was in a crummy mood and didn't want to sound so gloomy.  My sf ended up in the hospital last week for 4 days.  He was running a fever and wbc count was below 1 so not good.  He got to come home on Sat. and when I talked to him yesterday he was feeling better than he has since he started the whole chemo thing 3 1/2 weeks ago.  He goes back in on Monday for a week for second round of chemo.  If he holds up he will do this every twos weeks for a year.  My poor mom sounds so tired but she is keeping a good attitude.  We live about 45 minutes away and with gas prices the way they are, we only get to visit once a week and don't get to help the way we'd like...sigh...  Sorry to hear about your BIL, hope he's doing okay.

Gilda, so sorry to hear about your having to have surgery.  Is the mass benign or will you not know until after surgery?  I'll keep you in my prayers if that's okay. 

Karen, hope you're having a good visit with your daughter.  My in-laws lived in Marrietta, a suburb of Atlanta several years ago.  Good luck with the Arimidex.  Good idea to wait to start until you get back to start it though.  That's what my onc. wants to put me on if I am ever menopausal.  I'm still not on anything right now.  He will check me again in 2 1/2 months.  It didn't take much time for my catheter incision to heal. How long has it been since your surgery? I just had alot of burns from tape allergy that took forever to heal. 

Marty, my aunt lives in the mountains of North Carolina.  Her house is literally on the side of the mountain with a huge drop off on the front and the back of the house.  She loves it there.  Sorry you hate FL.  My son and his fiance went to Panama City last week with my brother and his family.  They had great weather and a had a wonderful time.  I'm jealous of the pontoon boat.  Hubby has always wanted one.

Funny thing happened when I had mammo last month.  I have had a pain in bc breast since surgery and lately it had gotten to hurting alot, all of the time.  Mentioned it in March to bs and he said I could have pain for another year or so.  Had mammos last month because of lumps and oddly pain stopped as soon as they squeezed breast and hasn't hurt since.  Mentioned it to onc at last appt. and he said, "cyst that ruptured maybe?"  I guess so because it doesn't hurt anymore.  One good thing about a mammo I guess...ha, ha...   I am a volunteer at voicesofmammosite website and the makers of the mammosite catheter have come out with a little spongey pad for use on mammos to make them more comfortable.  I got a sample in the mail last week, so next time you have mammo ask if they have the mammo pads. 

Boy, was I wordy tonight!  Guess I'm over my gloominess.  I am usually very upbeat and positive.  I have faith in my Heavenly Father that He will not give me more trials than I can handle and I have never lost faith.  I have just been emotionally drained.  Docs ask me if I'm depressed.  Ya think?  Not enough to warrant meds though so I feel blessed for that. 

Thanks again for all that asked about me.  I hope you are all doing well today.

Jacke

MAA123

Jackie,

Sometimes I swear we are on the same page.  Mine has been hurting worse lately. Nothing radical, just not as comfortable as it was.  I will keep that in mind.  Is that "typical" for cysts to develop post surg? Not looking 4ward to mammo. Still haven't got results from retest. Probably next wk. Looking 4ward to vac in GA in Aug.

Much needed vacation! I hope your sf and mom are ok. That's a hell of a lot of chemo (a whole year). It's understandable that you are "not yourself" with all that's come down.  Hang in there. Think about you often.

gg44

Thanks Marty and Jackie, I don't know if the mass is B9 or not. They found it when I got my CT scan. Jackie hope everything goes ok for sf. Marty, My incision healed very fast also. I have not had any pain or any redness from it altho I did get a small yeast spot around the incision from wearing a bandage. As soon as I let it air out a couple of days it was ok. I still don't have internet at home yet so I miss being here a lot. Have fun on your vacation. Gilda

mimi98

I finished with the mammosite radiation last Wednesday.  My balloon had the maximum allowable fluid (125cc). I had problems with air in the cavity and they put more fluid in balloon to get air out. Eight and a half minutes of radiation at each treatment.  My cancer was 1/2 a cm but my radiation area seemed very large??

I'm wondering if I'm experiencing normal side effects?  My breasts feel like their burning, red and irritated, bleeding from burn area.  My nipple looks distorted and hard? Will my breasts get soft and when will the burning feeling and bleeding go away?

 My doctor gave me something called silver sulphur something to put on the burn area.

I'll like to know how long it will be before all these symptoms go away and I can get back to normal?

jackieinbama

Mimi98, it has been a year and a half for me since having mammosite rad.  I had the burning and pain for a few months after radiation but no bleeding.  My nipple was hard and distorted looking as well, but now it is fine.  You will get better and the pain will go away, but it will take a while.  Haven't heard of the silver sulphur.  Hope it works for you.  Keep us informed of how you're doing.  Us mammosite girls have to stick together as our experiences are different than those with regular rads. 

Jackie

hopefullady

I have a question for you girls.  I began my radiation therapy today, 2 down and 8 to go.  I have to lay on a very narrow table with my right arm raised up over my head.  This gets soooo uncomfortable that I can barely keep it up there.  The nurse and radiologist don't seem to have any suggestions for what I can do so I was hoping maybe one of you would?   Did anyone else have a similar experience, and can offer some suggestions?  

Chris 

smirasky

I feel very lucky.  I had my MammoSite radiation last August.  My lumpectomy was in February.  I was asleep for the insertion of the catheter and woke up with a cute pink print tube top with velcro front fastiner.  I was able to stay at the American Cancer Society lodge next door to the hospital for the 5 days of radiation.  I live a 2 hour drive from Moffitt Cancer Center in Florida.  I had no burning or pain.  My radiation sessions were for 7 - 8 minutes each.  I had no lymph nodes involved, chemotherapy from March thru July, and the tumor was 2 cm.  So far, so good.  I have had no recurrance and am living a great active life.  MammoSite was certainly the best decision for me.  I couldn't be more pleased with the results. 

jackieinbama

Chris, I also had to lay on a very narrow table for the duration of my txs.  It was the same table they did the ct on twice a day.  I had to hold both of my arms up above my head so I would hold one hand with the other to make it a litlle more comfortable.  Congratulations on finishing 2 txs hoping the next 8 go well.

Smirasky,  I feel lucky to have had Mammosite as well.  Glad you had such an easy go of it.  Sounds like they took good care of you down in FL.  Almost a year for you. WooHoo.  Glad to meet ya.

Gilda, still keeping you in my prayers.  Hope you're doing okay.  Praying for b9! 

Karen, how was your trip to AT.  Hope you made it home okay.  Have you started the Arimidex yet?

Marty, not sure if "cysts" are common or not but I sure am glad there in no more pain.  I still get sore if I wear my bra too long but I'm not having a constant pain anymore.

Jackie

hopefullady

Thanks Jackie,

Now I am at 4 down, 6 to go.  It was a little better today.  There was a young x-ray tech in the room and she suggested that I lower the arm just a bit and put my hand under my head.  That seemed to help and the txs went much better.

I am finding it very hard to sleep in one position all night long so I am not getting a lot of rest.  Also, every day the radiologist mentions how it's possible that the balloon could burst.  It's gotten so that is all I can think about.  I don't know if I could bear to have it taken out and another one put in at this point.  

 This afternoon I told her that I was worried, and she said that it was not common, maybe about 5% of cases, but it can happen.  I am becoming a nervous wreck over this, even though common sense tells me not to.  Makes it hard to relax.  I will sure be glad when this week is over! 

Chris 

jackieinbama

Chris, Yeah for 4 down 6 to go.  You've probably had another by the time you read this.  I know how anything the rad onc or techs say that is negative, will just latch on to our brains and that is all we can think about.  It is hard to not dwell on those things especially when we're just laying there while they all head for the hills while administering the rads.  You''ll be okay.  Not sure why he felt the need to tell you that in the first place but like he said it is rare and those catheters are made to hold the water that's in them.  They're pretty sturdy.

Hang in there.  Before you know it, it will all be over and you can enjoy summer. 

Jackie

hopefullady

Thanks for the encouragement.  I am now over half done!  Today I met with the doctor at the cancer center.  He's the one who will remove the balloon and catheter.  He gave me a prescription for a valium when I told him I was nervous about having it removed on Friday.  I am to take it 30 minutes before.  I'm still nervous about it, although I will sure be glad to have it all over.  I had a little pain today, but I just try to keep in mind that it's only 2 more days.

Chris 

gg44

Hopefulllady, it will get better. I guess I was one of the lucky ones, I had no burning or redness from the radiation and I had a regular hospital exam table to lay on. Do they put a pillow under your knees to make you more comfy. Also  they put a small pillow beside my head to lay my arm on.I didn't even feel them taking the cath out. I always do like they tell you to do when your having a baby and having contractions, I focus on something else and count like one -one thousand two one thousand and so forth. They say the more you drain the easier it is to get out.

Jackie, thanks for the prayers

Gilda

hopefullady

Bless you ladies for seeing me through this week.  I have really had very little side effects and keep concentrating on the fact that it's only one week.   Every day when I go I see ladies there for their regular radiation treatments and I know how long they have to deal with it.

 They put a wedge under my knees, which does help.  There is no room on the table for a pillow beside my head.  Barely room for the arm.  But, that is getting easier.  I now bend the arm a little and put my hand under my head.  

 I have still been draining some, so I am hopeful that tomorrow won't be too painful.  I'm pretty sure I'm making more of it than it will really be.  I'm just so tired of having procedures done and being poked and prodded.  I think I want to be left alone for a while and not have anyone touch me.  

8 down, 2 to go.  By this time tomorrow I will be done!

 Chris 

hopefullady

It's over!!    Last treatment this afternoon, and everything taken out.   Like I suspected, it was not the big deal I thought it would be.  The doctor had them leave me on the table after the treatment, and he drained the fluid and took it out right there and then. I honestly didn't feel it.  Everyone was still in the room, so I had a lot of support.  They even gave me a little certificate they all had signed. 

I have a return check-up with the oncologist in a month.  Other than that, I'm free.   What a great feeling.  I may even take my bra off to sleep.  And tomorrow I can shower.  This is a good day!

 Chris 

jackieinbama

Chris,Yeah!  So glad you had an easy time of it today.  Doesn't it feel great to be done?  I'm glad that things worked out well for you and you are on your way to getting back to normal.  Hears to quick healing.

Gilda, here's to continued prayers for you.  Hope you're doing okay.

Jackie

gg44

hoefulllady, congradulations on being thru Jackie again thank you for the prayers. Just 3 more days. I will be getting internet back at home this week but won't be home until the 8th or 9th. Take care everybody. Gilda

jackieinbama

Gilda, continued prayers and b9 wishes.  Will be awaiting news from you when possible.  Take care.

Jackie