Has anyone done MammoSite Radiation Therapy?

ginger2345

Teena,

I hope things are going well for you today. The front closing sports bra sounds like just the right thing, the over the head ones would be tough.

I didn't have the side effects that Janice reported, but I did get a quarter sized blister that took forever to heal.

When I got my rads in Nov. 2004, there were only 2 sizes of balloons, but the docs were talking about more to come in different shapes also. Sounds like that may not have happened.

tbird57

Hi everybody,

Well, here I am at 6 am the day after the surgeon placed the mammosite balloon and cat scan to make sure it was in place.  Here is what I've experienced so far:

- The placement was not difficult. The doc took a large plastic tube with a knife on the end and punched through the side of my breast.  LOTS of fluid drained out of the cavity, from the lumpectomy.  The balloon was inserted and halfway inflated to hold it in.  My husband said it looked like a large arrow was shot into my breast because of all the redtipped ports at the end of the device.  The part that sticks out was much larger than I had imagined.  I was not allowed to put my bra back on - they placed pads over the incision and wrapped my chest with soft bandaging strips.   

- I went to work and waited for my 11 am appt with the rad onc, but my large breasts had NO support and started coming out of the wraps. Blood and more fluid leaked out substantially, and I felt it was not appropriate to remain at work in that condition, so I went to the rad onc an hour early.  During all this, I can't say it was very painful, but my body felt queasy like something was really not right - and there were mostly subtle shooting pains and aches throughout my chest and breast.

- At the rad onc, I got on the CT scan table and the tech sucked out the air around the device inside my breast (that hurt), inflated the balloon with more fluid, then did the scan.  The doc came in, checked the scan, said it looked "beautiful," put in a bit more fluid, then took another scan.  She pronounced it perfect.  Another tech took some measurements, marked my breast, and took actual photographs with a digital camera of my breast with the device in place.  They helped me up, sent me to a room, where the nurse padded the device with dressings, gave me a special soft cotton net bra to wear, and then wrapped my chest with wide ace type bandages for support (she did a great job).  I went back to work and was okay for the rest of the day.  Took a pain pill and slept on my back all night.

I start rads today at 9 am and 3 pm and will detail that experience in case it helps anyone.

Peace and love,

Teena

tbird57

PART TWO:

The first day of the mammosite radiation was much easier than yesterday when they placed the balloon.  If you have to work, I would suggest taking the day off on the day they place the device in your breast.  Otherwise, it was quite easy.  I arrived at the treatment center, got undressed from the waist up and hopped on the table to do a CT scan to verify placement.  Took about 15 minutes or so.  After that checked out, walked down the hall into the radiation room.  Again got on the table with my arm on the treatment side up, and the tech attached some tubes from a 3 foot high rolling nuclear device to the ports on the mammosite, put on some music, and closed the 6 in thick steel door.  When the machine started to make noise, kind of a whooshing sound, a red light in the room started blinking (WARNING light to indicate nuclear hazard present).  I didn't feel anything, only a slight vibration when the machine "clicked" every two minutes or so.  After 10 minutes, the machine made another whooshing sound which I assume sucked the radioactive seed out of there, and then the tech came in with a geiger counter to check for radiation.  They walked me down the hall and a nurse wrapped up the port that sticks out of your breast and padded it.  I put their soft net bra on, and then my own on top of it, and left.  The whole thing took about 45 minutes. 

To wash, I fill up the bathtub with about 6 inches of water so it only comes waist high, then use a washcloth to get my upper body but I leave my bra on in bathtub to make sure no water gets in there.  I bought some large antibacterial wipes to clean around my breasts when I take my bra off which may or may not be at the time I take my bath, whatever's easier.  I bring them with me to my appointment too.

The hardest thing for me is not being able to sleep on that side.  And you do have to be careful of what you do to strain that side when using that arm, etc.   But all in all, the day of insertion was the most uncomfortable aspect of the process.  Today is my second day of treatment and I feel okay - I was able to give my husband a massage, cook, work, without a problem.   

The best part is this will all be over on Monday!

 Peace and love,

Teena

ginger2345

2 down and 3 to go!!! Monday will be here before you know it.

Glad it's going well so far. I bathed as you've got yourself set up and that worked. I did use all sterile materials to change my dressing over the weekend when the nurse didn't do it. Perhaps the nurse will give you sterile gauze and anticeptics to get you thru the weekend changes.

tbird57

Hi Ginger,

I didn't think of that - probably a good idea to change the pad at least one or twice over the weekend.  I'm more concerned with removing the device on Monday and I've been told they don't use any local anesthetic - just deflate the balloon and yank it out!  Does it hurt????

 Peace and love,

Teena

emath

On my last day of rad with my mammosite, the doctor removed it. They clean the area good then deflate the balloon. After that the yank it out! OUCH!!!  I had scar tissue already growing over the tube, so it took her 3 trys to get it out. It did hurt and I was almost in tears, but it only took about 15 minutes. Then they bandage you and send you home. I had severe drainage for about 4 days after that and then I got an infection!

kdeit

Hi Teena,

My oncologist gave me a script for 1 Valium, and told me to take it and 2 Tylenol's about 90 minutes before my appointment.   Unlike (((Ellen))) I didn't have any scar tissue, so the balloon came out fairly easily - it may have been because of the valium and Tylenol, but it wasn't nearly as bad as I had feared.  It was more uncomfortable than painful, in my case.

Ask your nurse for a MammoSite kit to take home with you over the weekend - it contains gloves, split pads, gauze, antibiotic, etc. and is provided by MammoSite.

You're almost done - isn't  it a great feeling?

 Hugs,

 Karen 

OG56

I completed my mamosite in July and thought it was a great option to having full breast radiation. I am curious though did anyone have their balloon rupture? I did, lucky though it happened the day before radiation was to begin. Other than that I did not have any complications, no burn or skin problems. Did you all have the catheter and phantom balloon put in during surgery? Just curious.

ginger2345

Teena,

When the doc yanked out the balloon there was a slight twinge of pain, very brief, not bad. Good point about the mammosite kit; hopefully you got that or some other supplies. Hope all went well for you and Monday is a snap!!

Omahagirl, I didn't have the phantom balloon during surgery. I didn't decide on mammosite until after my surgery about a month, so it was back to the operating room for me for the one hour outpatient procedure. Was your cavity far away from the sking to end up with no burn or other skin problems? Did you have your treatment at UNMC or Creighton or somewhere else? I live close to Omaha.

kdeit

Omahagirl,

My catheter was not inserted at the time of surgery.  I went back a week later and it was an in-office procedure (Ouch!!).  I'm not sure why my surgeon does it that way - next appointment I'll ask. 

Hugs,

Karen

OG56

Ginger, I was treated at Creighton, Dr. Silva was my Onc Surgeon, I actually have been living in NY for the last 5 years, but wanted to come "home" for my treatment and many friends in the medical field recommended him and his clinic. I am glad I did. My tumor was at 2 o'clock on the right breast but I guess not to close to the skin as I didn't have any burning. I only had a tape blister. It wasn't to pleasant though to have the catheter reinserted after the balloon ruptured, but not awful either. Hope everyone is doing well and taking time to rest and relax.

Linda

angel0921

I had dummy catheter inserted since surgery on 9/4 and still haven't started rads. So although I appreciate not going through a reincision, I have really hated having this long rubber tube protrudding for this long out of the side of my boob. The catheter goes down to my hip,  if I let it hang which of course I don't and I have to somehow fit into my sports bra (I have big boobs!)  

It's not just the discomfort of the catheter, but also the daily care it entails, I have to at last 3 times a day change the dressing.It add a good 10 minutes to my daily morning routine.  At certain times it leaks through the gauze. Sometimes it burns. Sometimes the skin around the catheter tube gets rubbed the wrong way and it bleeds. It's an all around pain in the A. I have an appointment with rad oncologist on Mon and then I am suppose to get dummy catheter switched out to actual mammosite catheter on Wed by surgical onc and I am hoping that means I start my five day rads on a week from this Monday.

Another delay in this process was the actual ordering of the mammosite catheter by my surgical onc. Apparently this catheter costs close to $3,000 and it takes a few days to get from supplier. Also coordinating with rads onc is another step that delays things. Never in my life did I think I would have three oncologists to see (let alone one!!!): surgical, radiation and medical.

So in the end, I know the 5 days rads treatment will be easier, and I am trying to just suck up the wearing of the dummy catheter for so long.

OG56

Angel,will you be receiving mamosite radiation at the same hospital you had surgery at? I ask because I am surprised that they didn't have catheters on hand. Mine wasn't very long at all and with a little curl it fit nicely in my bra, I have big boobs too, the only time I wished they were a  B cup! If you haven't found a zip up the front bra yet, just letting you know I had a really hard time finding one to fit!  Hope you start soon and get it over with, I hated all the waiting this diagnosis made me do. I have to tell you I was afraid of the radiation and I cried when they shut the door for the 1st tx. but there was absolutely nothing to it just another step forward. Good luck and let us know how things are going for you.

plakatakr

Hi Teena,

I was scared to death to have my catheter removed because I wasn't getting much drainage at that time. I took 2 motrin and it was easy. It took a few minutes to pull it out but there was no pain. Mammosite was a piece of cake. However, I see the oncologist this Thursday...I'm her2+

 Linda

OG56

Karen, isn't it interesting how each place or Dr. does things differently. I wrote up a list of "convienence's" that I thought my Dr's office should have, like breast pillows, front closure bra's or at least a place to order them from. A detailed sheet of what to expect during and after Mammosite etc. Interesting too I thought is that both my surgeon, his nurse, and the radiologist are cancer survivors themselves. I told the med student to look at this web board if she really wanted to know what was going on with BC patients..

Also, wanted to add that the catheter site took forever to heal, but now 2 months later is finally closed.

plakatakr

Teena,

I'm a little confused, are you getting treatments over the weekend? 

Linda

angel0921

Omahagirl, the mammosite catheter is being placed by the onc surgeon who works in same hospital I had surgery. I have no idea why they don't have them on hand....just another bewildering question in this process. I did get several front zip and front hook bras or else it would be nearly impossible for me to do the dressing (and tuck in the foot long catheter with three nozzles at the end!). I stopped using tape because it was bruising up my skin badly. Now I just roll up gauze around the catheter and incision then place another layer of gauze on top and hold it all together with bra. My incision is the 9 o'clock position. Is that where everyone else gets incision for catheter?

ginger2345

Angel,

The incision will be placed at the most convenient position to reach the cavity and place the balloon. My surgeon was able to open a small area in my bc surgery incision but some women have one in a completely different spot. Good luck with your treatment.

emath

Had a dummy inserted at time of surgery. My husband was helping me change my bandage 3 days after surgery and pinched my cath causing it to leak all the fluid out, so I had to go back and see the surgeon. At that time she took out the dummy and inserted the real mammosite. This was painful for me. But I have this thing with scar tissue growing very fast. I really want to know if any of you have had you entire breast including the nipple peel, like a really bad sunburn? I finished rads in August and mine has been peeling really bad, leaving a really smooth but yet like color skin underneath. With the exception that the nipple is very sensitive.

Ellen

jea1013

Angel0921,

I'm so sorry you are having to go through this.  Something just doesn't seem right.  I've never heard of anyone having to wait this long for the Mammosite radiation to begin after the dummy has been inserted.  Maybe it is time for you to really take the bull by the horns and insist on knowing what is going on, and insist that they begin this!  I hate to see you having to wait so long.  

hopefullady

Wow, it's strange how the same procedure can be so different for everyone.  I never had a dummy catheter placed.  About 3 weeks after surgery the surgeon made a small incision right into my lumpectomy incision and at that time she inserted the balloon and filled it with saline.  That was a Thursday,  on Friday I went for the CT scan to be sure everything was in place.  I was nervous about the balloon rupturing, but it never did.  The radiation started on Monday and went for five days.  The tubing was only about 31/2 inches long.  It was in 8 days total.   I did take a valium and Tynenol before they removed it, but I didn't feel a thing.  Honestly, they had to tell me it was out.  I lived in those hook front sport bras 24/7 for quite a while.    Best of luck,

Chris 

kdeit

Angel,

What you are going through is NOT right.  Someone dropped the ball on scheduling all of this.  Before I even had a surgical date, I had consultations with the radiologist and with a plastic surgeon (I was trying to decide between a mastectomy with reconstruction or a lumpectomy with either Mammosite or regular radiation).  Then I went back to my breast surgeon, told her I wanted the lumpectomy with Mammosite, and her staff arranged everything.  5 days after surgery I went for my surgical follow-up.  They did a sonogram and determined the size and shape of my cavity, ordered the catheter and 3 days later (on a Friday) it was inserted (into a new incision which she made in-office that day).  I started radiation on Monday.

Have you thought about contacting the medical director at that hospital and discussing what you have been going through? 

Ellen,

I did not have the peeling that you mention - have you been back to see the radiologist so they can see it?  The only irritation that I had was caused from the tape. 

Hugs,

Karen

emath

I have an appointment to go back to rad onc on Oct 6. Right now down here I can't even get my test done for my liver scan due to this hurricane mess. I am still without power! Will be glad when they get it back up and running, need things back to normal. My med onc said that I had very high amounts of rads each session lasting 15 minutes once they got me hooked up, twice a day. He said I had the max and this is propablly why I was peeling like a bad sunburn.

kdeit

Ellen,

I didn't realize you were in Texas until I looked at your profile this morning.  I'm so sorry that you are still without power.  We went through the 2004 hurricanes that swept across Central Florida in 2004 - no power for 2 weeks, lost part of our roof, etc.  I pray that things will be back to normal for you very soon.

As far as the amount of radiation that you received.  To my understanding, each person's total amount of needed radiation is determined by the radiation center before your first treatment.  Then, the length of time that the radioactive seed is in your breast depends on how old the "source" is.  For my first 3 sessions, the radioactive seed was in for about 12 minutes.  When I went in for my 4th session, (the afternoon of the second day) the source had been replaced, so it was in for only 6 minutes the rest of the week.  So it definitely sounds as if you had the maximum amount (unless the source was very old) and would explain why you are peeling.  I hope that the rad onc appointment will give you some answers and that you'll feel better after you have talked to him.

Hugs,

Karen

angel0921

Well my situation is still up in the air. My appointment with the rad oncologist (which was my first) did not clarify anything for me. The rad oncologist is now not sure mammosite rad is best option for me because I have silcone implants (in place for years now) which he explained can push the mammosite balloon closer to my skin and thus cause possible burning during radiation. He said a CT scan would have to measure the thickness of my skin and see if was thick enough. There seemed to be other issues related to my profile (I just turned 46 and the cavity size may not favor the mammosite). So rad onc said to call him back tomorrow once he consulted with onc surgeon.

Now I feel even more frustrated because on Wed I am suppose to switch out dummy for real mammosite catheter. I am thinking surgeon may not do it until I get CT scan to confirm the thickness of skin and other details.  Therefore, I will be left EVEN longer wearing this thing. 

I am trying to be patient and continue to think this is all a small price compared to what many others who have cancer must go through and I rather they be careful in my radiation planning than just doing a "cookie cutter" approach.

However, when I hear some of you had your rad consultation appointment before your surgery, I so feel frustrated as to why things with me have been so slow. I thought that perhaps the specific rad treatment plan couldn't be devised until there was more certainty regarding the pathology report and also a certain degree of healing within the breast had to transpire.  It's also very difficult to reach my surg onc. I have left messsages in the past and he does not call back. 

It just feels like I am being left in limbo!

kdeit

Angel,

At my initial consultation with the radiologist (before my surgery),  he looked at my mammograms, my MRI and my sonogram.  We talked about external vs. Mammosite and he stated that as far as he could tell at that point, I was an excellent candidate for Mammosite. The next time I saw him was 2 days after my surgical follow-up, before the catheter was inserted the following day.  He reconfirmed that all still looked good for Mammosite - that the cavity was far enough away from my skin and from my ribs.  The next day (after the catheter was inserted in the morning), I went to his office in the afternoon and they did a simulation to set up the sessions for the following week, and confirmed that the balloon was properly inflated and still in a good position.

I just can't understand why you have been put through all of this uncertainty - it isn't the usual protocol at all.  I'm keeping you in my thoughts and prayers that your doctors will get together and not continue to put you through this discomfort and distress any longer.

Hugs,

Karen 

emath

I was told before surgery that my rad onc was not sure that there would be enough skin left in order to have a mammosite. But they did insert it after the lumpectomy while I was still under. A few days later they put in the real one and the following day I had a CT to see if it was going to work. I was told that there was barely enough there, but it would work just fine. So we continued with the rads the next day. I am so sorry you are going through this ((((((angel)))))). Please keep us informed.

angel0921

You ladies are great. I REALLY appreciate so much your feedback and support. No one I know can possibly understand how the logistics of all this is getting to me ( as I keep tucking my foot long rubber tube in my bra). I really think that these male doctors just don't get it! Am I wrong to think a female doctor would be more empathetic and less likely to have this happen??

kdeit

(((((Angel)))))

My breast specialist does happen to be a female, but that does not excuse your doctors for their lack of concern for you.  I still think you should call the medical director of that hospital and make an appointment to see him/her. 

Please let us know what hapens tomorrow.

HUgs,

Karen

angel0921

I called the rad onc today as he told me to. When he spoke to me on phone, he said he wanted me to come in in person so he could discuss with me my options. So I left work an hour early a little anxious and met with rad onc. His explanation of the  three options was not a newsflash, but I guess he felt it was his responsibility to give them to me. Option 1: conventional radiation 6 to 8 weeks, Options 2: Mammosite 5 day or Option 3:  Masectomy.

I think the issue for him is that I just turned 46 over the weekend and the age recommendation he follows for mammosite treatment is women 50 and over (although I thought I had read elsewhere 45).  He was too professional to come out and say it,  but I get the impression he and my surgical oncologist disagree on this. My surgical onc is more cutting edge and really insisted from the first day I consulted with him presurgery that mammosite was my best option. The surgical onc really never offered me the other two options. Hence, why he inserted dummy catheter right away during surgery.

I also surmise that my radiation onc is more conservative and traditonal and crosses every T and dots every i, For example, he said he didn't want to do my CT scan till NEXT week because he thinks my skin needs to adjust to the insertion of the balloon for the measurements to be precise. This kinda annoys me since I just want to be done with all this and start the d**** rads already. If I don't get the CT scan till next week as he is planning , then that means rad treatment won't start till 10/6, the first Monday after CT scan since they don't radiate Sat. or Sun..

I have my appointment tomorrow with surgical onc to have balloon inserted along with "real" catheter. I want to ask him his take on all this waiting for CT scan and then delaying rads another week and a half, Maybe I can persuade him to persuade rad onc to start sooner???

I was also thinking maybe I should ask about getting another onc who won't delay my rad treatment. From reading about all your experiences here, it's obvious there is no need to wait days in between balloon insertion and CT scan. I am wondering if Rad onc just doesn't have enough experience with this which is why is is hestitant????? I am thinking I need to really to speak up tomorrow with surgical onc and express these concerns.

 Any suggestions or opinions from you tonight before my apointment tomorrow would be appreciated. Thanks!