Has anyone done MammoSite Radiation Therapy?

MAA123

hopefullady, CONGRATULATIONS!  It's like being sent home from prison!  I was going to suggest a valium or something for anxiety.  I did that during my treatment on the days I knew I was gittery.  No one at the rad center told me about raising my arm.  I crossed my hands in front of me and got burned badly. That was worse than the incision. Took a long time to heal.  Glad that other places try to prevent it.  Gilda, let us know, We are all thinking about you and praying things will be fine.  Think Positive!  Mimi98: Aloe is very good for burns. (pure aloe from health food store.) Just apply as often as you can. I finally healed after 3 - 4 wks. Sorry you are going thru this.  It stinks.  Some techs are better than others.

Take care all. PS Still no word on retest with labs.  What the heck?  I need to call again.

kdeit

Hi all,

I got home from Atlanta Sunday night - rested up yesterday, and thought I'd check to see how everyone is doing.  I took my first Arimidex yesterday morning - so far, so good.

(((((Gilda ))))) -  Sending lots of hugs to you for your surgery this week.  You are in my thoughts and I pray that everything turns out well for you.

Marty -  We used to have a pontoon boat and I really, really didn't want to sell it, but my husband had always dreamed of having a sail boat, so when we found one, the pontoon had to be sold.  I loved that boat!!    The Carolinas are beautiful.  We drove from Kennesaw, GA to Westminster, SC last Friday to visit my cousin who lives there - he lives right on a lake, up in the mountains, it was such a pretty drive.  But - I still love Florida best.  Have you gotten your test results yet?

Jackie - That is really strange about the pain in your breast that went away after the mammo - it must have been a cyst, and that really proves how much they compress us, that it could pop it.  At any rate, I'm glad you're pain-free now.  How are things going with your sf? And your mom? 

Mimi and Chris - sorry I didn't get to meet you to give you some support and encouragement while you were going through Mammosite, but glad that you are both done and hope that you'll heal and be back to normal real soon.

Smirasky - if you don't mind my asking, where in Florida do you live?  I'm in Kissimmee, and one of my close friends goes to Moffitt.  It's a wonderful center!!

 Hope everyone has a great 4th of July weekend!!

Love & Hugs,

Karen

hopefullady

Hello again ladies,

 It's been one week now since I finished my mammosite therapy.  I had almost no side effects.  No problems with my skin at all, and from front view you would never know anything had been done to my breast.  I do have two incisions on the side, under the armpit area.  I can feel a large (to me) hard lump just next to the incision site.  I have a follow up appointment next week, so will certainly have that checked out then, but I was wondering if anyone had something similar or an idea what this might be?

 Chris 

jackieinbama

Hey, Chris. Happy 4th!!  Glad you have done so well.  I had a bit of thickening at my incision site that was just scar tissue but it evenually went away. 

Have a good rest of the weekend.

Karen, how's the Arimidex going? 

Gilda, still praying for you.
Jackie

kdeit

Hi,

Chris, I also have a thickening near my incision site.  I'm glad to know from Jackie that it may eventually go away.  My incision still isn't totally healed - seems like a long time, but I know we're all different.

 Jackie, thanks for asking about the Arimidex.  I'm still going fine on it, but keeping my fingers crossed here as I say it.

Gilda, how did your surgery go?  I hope you're home and doing well.  Please let us know when you are up to it.

Marty, have you called for your test results?  I hope they get them to you soon.

We anchored out in the Indian River the night of July 4th and saw more fireworks displays than we ever imagined!!  We could see as far north as Cocoa, to the south past Melbourne, and then there were fireworks going off all up and down both sides of the river - it was awesome!!

 Hugs,

Karen

MAA123

Hello All,

Got test results back---I'm consistent....still neg, neg, neg.  (OH WELL, it was worth a shot). Waiting for the Oncotype study, which surgeon recommended.   I read up on it, but my mind tends to forget what it doesn't need to remember!!  I'm bad at retention!!!!

Gilda- How are you? I know you won't be up checking in for awhile, but I'm thinking of you and look forward to your recovery.

Karen, We also went on the the river and saw the fireworks. It was great (& no rain! We had 2 sailboats, both of which I hated.  Too much left to 'mother nature'..scared crap out of me.  Pontoon is like all fours on the floor!!!  Easy to launch and lots of room. Only thing missing is bathroom!!!  About 7 yrs. ago we had a Searay and sailboat at the same time!!  Nerve wracking!Sold both within 2 weeks of each other!  Happiest days of our lives!!!

Jackie, How are you and your family?  You must be tired, emotionally and physically.

Chris, I had my surgery in April and last rads end of April. I am still numb in spots and now have "boob of steel"!!!  Hard as a rock. Outside of a little indentation and a scar that looks like a stretch mark, it looks pretty good.  Hope you all had a good 4th of July.  Marty aka "Steel Boob"

gg44

 still sore from the incision but that will get better. I am on oxycodene so that helps. I haven't been on the comp much. Thank you all for your prayers and support.Gilda

Some of this didn't get posted!!!!! My tumor was b9 Thanks for all the prayers and support from everyone. Gilda

MAA123

YEAH!!!!!  Great news!  Bet you are doing the Happy Dance!!!  Take it easy and get well soon. Marty

jan777

Hi everyone, I was glad to find this site and to hear everyone's experience with mammosite.  I finished my treatment on June 27th.  I am still experiencing quite a bit of pain at the catheter site and it has not completely healed yet.  Did anyone experience pain in the area where the balloon was after the treatments?  I will see my rad onc for a check up in early August and the med onc late August to discuss medication (probably Tamoxifen)  Thanks again for all your comments, it helped me to know that everyone has different side effects and various pain levels from the treatment.  My catheter was in the underside of my breast, I'm curious to know if the location of the catheter could make a difference in the comfort level during the duration of the treatments.

kdeit

Marty - I don't know much about what kind of additional treatment options there are if you are triple negative, but am hoping that your Oncotype score will be low, so that your oncologist can reassure you of the unlikelihood of any recurrence.  When I did  a search here, I came across this page - it looks as if the transcript will be posted in a couple of weeks:

 http://www.breastcancer.org/treatment/planning/ask_expert/2008_07/index.jsp

I know what you mean about sailboats and Mother Nature - we have gradually worked our way up to a 30 ft, and now I've convinced my husband to look for a larger one, like maybe 37 ft. The larger ones handle much better in high winds.  It really took me a long time to tolerate any heeling over about 5 degrees   Our last pontoon boat had hard sides in the middle, and had a small galley and "changing room" with a porta potty.  I truly loved that boat!!

Gilda - what great news!!  So glad your tumor is benign and hope that you will continue to rest and take it easy and let your body heal - you've been through an awful lot lately.

Jan777- welcome!!  Yes, I felt a sort of deep ache occasionally for a while after the catheter was removed.  My incision is almost, but not totally healed, and my last day of treatment was May 23rd.  I happened to have an appointment  with my primary care doctor about a month later, and she looked at the site and said it was healing OK.  You might want to call your surgeon or your PCP to have them double check just in case.

My radiologist's office called this morning to ask if I would be willing to talk with a reporter who is doing an article about Mammosite - I agreed, and will hear from the reporter sometime today.  I am excited about being able to help get the word out about Mammosite - I can't think of one non-medical person I have talked to that knew anything about it. 

Hugs,

 Karen

hopefullady

Hi, 

 I am back again for more advice.  Seems like I keep getting blindsided by things.

As I said, I had surgery and then mammosite and finished my radiation two weeks ago.  By the way Jan777, mine was on the right side of the breast and she made the incision into where the lumpectomy incision was, it healed up pretty quickly but I still have little "flashes" of pain where the balloon was.  

When I went to the surgeon for my follow up checkup last week she said that I need to see an oncologist.  I told her that I had an appointment with mine later this month, but she said "no, that's your radiation oncologist, you also need a medical oncologist."  Well, I naively thought that I was done with treatments etc. and this was over, except for the getting over it part.   

What am I in store for now, besides another doctor to pay and more trying to get off work for doctor appointments?  Does this ever end?

Chris 

kdeit

Hi Chris,

I'm so sorry that your doctor didn't prepare you in advance for the fact that you will need to see a medical oncologist now that you are finished with radiation.  If your tumor was estrogen positive, then you will most likely be placed on "anti-estrogen therapy" which is Tamoxifen (for pre-menopausal ladies) or one of 3 possible aromatase inhibitor meds for post-menopausal women.  I'm 62, past menopause and am taking Arimidex, which is an aromatase inhibitor.

These drugs work differently, but are given to help prevent the occurrence of breast cancer in the opposite breast.  The way my oncologist explained it, once a woman has had breast cancer in one breast, and gone through a lumpectomy and Mammosite, it's highly unlikely that it would ever recur in that breast, but that there is a 25% chance of developing breast cancer in the other breast.  In my case, he said that taking Arimidex for 5 years will reduce that to a 10% chance.

I started Arimidex two weeks ago and have only had one appointment with him.  I'll have a follow-up in mid-August, so that's not too bad.

There's a lot of good information here:

http://www.breastcancer.org/treatment/hormonal/ 

I hope this helps.

Hugs,

Karen

kdeit

I was interviewed for an article about Mammosite.  Here's a link to the article:

 http://mysanfordherald.com:80/articles/2008/07/4351.html

Just to clarify, when I said it wasn't painful, I was referring to the actual radiation process, not to the surgery. 

Hope everyone is doing well.

Hugs,

Karen

hopefullady

Hi Karen,

 I thought the article was very good, and thanks for the link to the information about hormonal treatment.  My doctor did not mention any of this to me, and I just assumed that after the radiation I would be done.  Guess it was one of those questions I just didn't know to ask.   

 I have appointments with both oncologists next week so I guess I'll know more then.  Thanks again for the information.

Chris 

jan777

Hi Everybody,

It will be three weeks tomorrow that my catheter was removed, I'm still having intermittent pain.  I had read in an earlier blog that someone had problems with their nipple, mine is very red and tender and somewhat swollen.  I spoke to my surgeons office and they advised me to call the rad onc, (unfortunately he does very few mammosite treatments) his nurse did say that she sees problems with the nipple with standard radiation but I don't think they have much experience with mammosite.

Chris,

Sorry you had not been advised about the medication you may need, I saw the med onc before the rad onc, I will see him again in late August. I guess we're all getting an unexpected education concerning breast cancer. 

I'm glad to hear that you didn't experience many side effects from your treatment.  Hope everything else goes well for you.

Karen,

The article was good and I hope it helps get the word out about mammosite radiation.  I was a little naive going into the procedure because the only articles and testimonies I read were actually from the company's website.  Reading these blogs helped to enlighten me and let me know that it is not totally painless and it can have several side effects. 

My surgeons nurse reminded me that even though you can't see it, the inside of the breast is burned.  That helped me to understand some of the changes I've noticed with my breast.  I am very thankful that the treatment was only one week instead of six or seven!  Thanks again for all of your information.

Jan

gg44

kdeit, great article. MAA123, as soon as I could I did do the happy dance. I still have 4 more weeks of recuperating on that surgery. Glad everyone is doing good.  Gilda

kdeit

Hi All,

I'm glad you all liked the article - I was a little bit leery about doing the interview, but it turned out OK.  The actual newspaper article also had pictures - two of the catheter and one of my doc!! 

I just got back from a glorious beach vacation with our daughter and her family (who live in the Atlanta area) and our son and his (they live near Tampa).  Two of the 3 grands have birthdays this week - Andrew turned 4 and Kira turned 11.  This year Hannah's 6th BD was during Spring Break for both her and Kira, so Kira and I drove to Atlanta to celebrate with her.  Our daughter always comes in the summer with Hannah and Andrew so Andrew and Kira can celebrate theirs together.    We usually all spend at least a few days at the beach when they are here.  I'm exhausted, but it was wonderful weather and everyone had a great time.

Jackie - are you OK?  You haven't posted in a very long time.

Marty - I see that the triple-neg symposium is posted on-line now.  I haven't had a chance to read it yet, but hope it's helpful to you.

Hugs to all,

Karen

MAA123

hopefullady, I'm in your boat.  I too was advised to see a medical onc. I'm triple neg and there's no after tx for me.  I went a couple of days ago (to med. Onc.). Surg. thought perhaps she would be more "up" on things and know of something. Onc was about 27 y.o.!! Sweet girl.  She began "selling" me chemotherapy.  I swear I was looking at her like whe was nuts. My tumor was approx. 2mm! Chart didn't really say size of tumor (??). She had to call surg. office & ask.

Surg. already told me I wasn't candidate for chemo, since tumor was so small--no lymph nodes involved. At any rate, I feel she was disappointed there was no fish on the line. She asked family history, etc and I informed her I had anemia and family history of blood disorders---me and my big mouth. So she ordered a panel of blood tests. However she basically said there's nothing she can do for me except check in w/her 2x a yr.  Another doctor--another bill---more time off from work.  I hear you woman!!!  This sucks!  It's not bad enough we have to keep up with our dentist, gyn, surgeons and mammograms....We just spend half our lives at work and at the doctor.  Karen, can't wait to read your interview. We went from a 25' to a 35' with power boats in between. Both were adventures that I do not want to relive, esp when we ventured to the Keys for vacation, got grounded in Key Biscayne and HAD TO BE TOWED TO MIAMI FOR A SWEET COST OF $900.00!   For the 2nd time in sailboat ownership, I got off that boat and found a ride home! Every sailboat vacation was a disaster with a car waiting for me at port! (after I kissed the ground).  There's not enough vodka on this planet!  However, I'm an ocean whimp. I used to fly a single engine Cessna without the fear I had on a sailboat!  Go figure!

 Jackie: I hope all is ok with you. Check in when you can! Take care all! Healthy wishes to all of you. 

hopefullady

I saw my radiation oncologist last Monday.  Actually spent about 45 seconds with him, the exam etc. was done by the physician's assistant and the nurse.  Anyway, he said I didn't need to come back because there is no need to see three doctors for one condition.  At least he realizes that.

 Saw the medical oncologist for the first time Thursday.  I wish I had chosen the woman. He said that I will be taking tamoxifen for five years and they are going to do a test on the tumor and then decide if I will need to have chemo first.  

I wish someone had told  me about all of this from the beginning.  I had really thought that I could begin to move on, and now this.  I should find out the results of the test and have my next appointment in about three weeks.

Chris 

kdeit

Marty - WOW!!  You can fly a plane and a sailboat turns you into a wimp?  I'm a white-knuckle flier - I do fly, but sit in an aisle seat, refuse to look out, and grip the armrests so hard I swear I leave fingerprints  

Chris - Was it your primary care doctor who found your cancer or a specialist?  No matter who it was, I think it would be good for you to let them know that you feel you should have been fully informed about what would happen after surgery.  It's too late for you, but maybe the next patient would be better prepared.  I'm sorry that you weren't told up front.  That doesn't seem fair to you.

 Jackie - Are you OK?  I'm concerned about you.

 Hugs,

 Karen

jackieinbama

Karen, thanks for asking about me.  I am doing okay.  It has been a very busy couple of weeks. Stepfather had third round of chemo and my brother had back surgery.  We returned yesterday from staying with my sil in Pennsylvania where we stayed a few days so that we could go to my son's wedding in DC.  It was a beautiful wedding on a picture perfect day however we spent 9 hours in the car Saturday.  Traffic was a nightmare, people trying to get to the beach.  Before that we had a flood in our living room when our washer overflowed.  Took a couple of days to clean up and dry out.  Tomorrow have a 7:00 a.m. appointment for a bone scan and abdominal CT.  Have been having pain in my tailbone since March and elevated liver enzymes since I had started Tamoxifen a year and a half ago.  Liver enzymes have gone down some since I went off of it in December, but still elevated some.  Sure it's nothing but my docs are just being cautious I guess.

Sorry to not address all but haven't read back.  I'll try to check in later tomorrow. 

Hope all are doing okay and everyone is feeling and healing well,

Jackie

kdeit

Hi Jackie,

It's good to hear from you.  I'm glad the wedding went beautifully, but sorry about everything else that has been happening to you and your family.  I hope you have a good report on your bone scan and CT. 

I had my 3-month follow up with my surgeon today and was able to ask about the hardening that I feel in my breast - she says it's a seroma that may take as long as a year to go away.  I had my annual check-up with my PCP yesterday and she was concerned enough to write me a script for an MRI, but after seeing the surgeon and having an ultra sound done today, I'm not going to have the MRI done.

Hope everyone is doing well and having a good summer. 

Hugs,

Karen 

MAA123

Chris,

I''m sorry you are going thru all these unexpected twists & turns NOW. Do your research on the chemo thing.  They love selling you chemo. Lots of $$$ in their pocket.  If your tumor was 1 - 1.25 cm in size they recommend it, but anything smaller - no. Oncotype has a bearing on it also

I am thankful I had a surgeon who walked me thru step by step on everything. No surprises at all.

The oncologist I was referred to by surgeon was all over me with chemo before knowing the size of my tumor. Come on, don't you think you'd know these facts before seeing a brand new patient? Not impressive. She had nothing more to sell me so she said she'd see me twice  a year...(maybe). She can do my blood tests for possible recurrence, or if I freak and think it's back. But otherwise she's on the sidelines. Same with the Rad Oncologist. Why would I need to see her again?  She does nothing. It's all for mammosite statistics. I don't benefit from the visit, only she does, so why should I have to pay HER? I'm getting very cynical about doctors, as you can tell! I will get off my soapbox now.  Take care!

hopefullady

Thanks everyone for the support.  I just feel like I'm being hit with something new and unexpected every time I turn around.  Not to mention the bills that show up it seems like every day.  And I have really good insurance!

I called the oncologist's nurse Thursday to tell him that I was going out of town on the 14th and wouldn't be back until the 26th, so maybe they could schedule me in before I leave?  He called back yesterday and said the results of the Oncotype test were in and they want to see me next Thursday.  So I guess I'll wait nervously till then.  The tumor was 1cm, so the oncologist said that was borderline.  But I kind of thought he was pretty excited about the possibility of chemo too.   I guess a lot will depend on the Oncotype score.   And maybe I will get a second opinion this time instead of blindly doing whatever I'm told.

 Please hope good thoughts for me for a low score.

 Chris 

hopefullady

Oh sorry, I didn't mean to make it even a day longer than necessary, my appointment is next Wednesday.  Not Thursday, that's when I leave on my trip.

 Chris 

emath

I had the mammosite done with no pain. The only pain I had was the cath put in and then removed right after the last treatment done. You will have a CT scan done every morning before the treatment. They did the oncotype on my first biospy and it came back HER2- (neg) and I am waiting for the one done on the tumor itself. I just finished last week my rads, and the doctor is pushing chemo with me as well. I will wait until the other test comes back and make that choice myself. But say I will need to take AI's for 5 years with or without chemo.

hopefullady

Ellen,

 I finished my radiation in May.  

And I will be on tamoxifen for five years,  either starting now, or if chemo then after that.

Chris 

emath

Hopefullady, I will keep you in our prayers. My onc gave me all the percentages and left the choice up to me. Do nothing, AI's for 5 yrs or chemo and AI's. WWith each choice your percentage will go done. Mine where 25%, (nothing) - 12% (AI's) - 6% (chemo & AI's) I have not yet decided. Let us know what you decide. (((((((((((hugs))))))))))))))

kdeit

Chris,

I hope that you will have a great time on your trip - that it is for fun, not for work.  And even if it is because of work, try to get some fun time, too.

I'm hoping that your Oncotype score will show you don't need chemo, but if it's uncertain, then if I were you, I'd get another opinion.

Please let us know what you find out before you leave on your trip.

 Hugs, 

Karen

hopefullady

Thanks so much both of you.  The trip is for work, but I will have 2 whole days and several evenings to myself for fun. In Las Vegas.  It's as close as I am going to come to a vacation this year, and the most I have attempted to do since surgery. 

I never was offered any options or told that it was my choice what treatments to have thru this whole thing.  It wasn't until I came on these boards that I realized that some of this is up to me and I don't have to just do whatever I'm told.   So, whatever I'm told on Wednesday I may just decide to take some time to think about the options and even get a second opinion if I think it will help.

Bless all of you for helping me to realize that I have some say here and that there is no hurry.  It's not likely now that a few more weeks is going to matter one way or the other.  I'll post again after I see the oncologist and find out what my score is.

Chris