Has anyone had balloon-catheter internal radiation?
I see the radioogist tomorrow and my surgeon has already mentioned this therapy. I get a lumpectomy next Tuesday. I am going to have to make some fast decisions. External radiation sounds dreadful. any ideas?
Comments
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I did not have this, but my RO talked to me about this and it sounded good to me, but it was not possible for me because of the location of my tumor. Check out the DCIS board. There is a thread near the top that has discussion about the side effects from mamosite radiation (baloon catheter)
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I had brachytherapy (contura rather than mammosite brand) last August. I am very glad I had it instead of external radiation, because it avoids irradiating heart, lungs, and lymph nodes. My breast now looks really good and the lump of fluid in the cavity is almost all massaged out.
However, there is a lot to consider about this, and more research is coming out all the time. It's definitely not for everyone. I suggest you read the info on this in the main breastcancer.org site as well as searching for other discussion threads. Do you have specific questions?
Best of luck!!
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I know. I read that thread and it was a littany of terrors. That is why I wondered if anyone has had a good experience. Thanks for responding.
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I had Contura radiation last October. Other than some fluid leakage and a continuing seroma (which is slowly decreasing), it was very easy and over before I knew it. No pain, no skin problems. I had some discoloration - like a light suntan, then some darking of the pores, all of which have gone away. I had a little inflammation around a rib on ultrasound around December, and it was sore there, but this too has gone away. All in all, very easy!
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My question was primarily, how does one avoid the fluid cyst and the severe pain months later. I guess you cannot but it need not become a problem if there is therapy.
My female surgeon is quite good and it seems that she is doing all the surgery around here. I live in a University town. I expect she is current with all the new research.
There is disagreement in the medical community about which is better for long term results. Some claim that recurrence is more frequent with the balloon and that whole breast is better.
Supporters say that those against are working with old data. I must say that whole breast is not a walk in the park and so drawn out. This way I will go through inconvenience for a couple of weeks then I am through. It is the not showering that really gets me.
Surgery has been rescheduled for April 24 with the exchange (balloon placement) on April 27.
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That is so good to hear Madpeacock. I don't know what Contura is but I guess I will find out as I see the radiologist today.
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Yes, I was lucky enough to qualify for Mammosite radiation therapy for 5 days twice a day. My RO recommended breast massage 10 minutes a day to prevent seroma. I would highly recommend Mammosite if you qualify.
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Just got back from the radiologist and I should be done with everything including radiation by the first week of May. They are seeding the spot with radiation twice a day for 5 days. Then I am done.
There are several steps before I get there such as the pathology report from the lumpectomy and the positioning of the balloon. I also learned that it is Stage 0, Grade 1 and 100% hormonal receptive. The radiologist is very optimistic and says he can cure me. Like a friend of mine said, if I trust my doctors all have to do is show up.
Also, the staff was very cheerful and humorous. Not like other radiation staff I have read about on this web site. They allayed all my fears and I am optimistic and eager to get it all over with.
I still want to hear of other's successful treatment. I want to hear what can go right, no all what can go wrong. Thanks, everyone.
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I too would like more info on this .... from ' real ' people .
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Infobabe - is it your left or right breast? I think the MammoSite and other internal therapies tend to deliver less collateral damage to heart, lung and ribs. Left breast is more of a concern for all radiation due to proximity of heart. I was told my local facilities (Nashville TN area) only do rad therapy in the supine position. I am exploring alternatives for prone and possibly IORT therapy. Mine is left breast. Glad you found a group you are comfortable with.
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It is the left breast. Probably another reason for the MammoSite as opposed to the more gereral area of exterior radiation. Have not discussed supine position. Didn't know about it. Will ask. Thanks.
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I had the SAVI catheter internal radiation done after my lumpectomy (Jan 20). It was the 5 days twice a day therapy.
Cons first:
- I'm 32A small breasted and it hurt more than larger breasted women. It was constantly poking me but not a sharp pain - just a dull ache most of the time. However I worked full time throughout the whole process and it didn't bother me that much. Did not take a lot of pain meds at all.
- having it surgically inserted in outpatient setting (from my breast surgeon 10 days after lumpectomy) hurt like hell. And when it was removed it hurt like hell! But again, I was told the smaller breasted you are, the more it hurts. I just have less fatty tissue and all to give me any kind of cushion. Plus it also depends on the location of where the tumor was. Even a bigger breasted woman will have it hurt more if it's closer to say the breastbone or nipple area etc
Pros, as PAIN was the only con for me, LOL:
- 5 days vs 35 days
- no skin discoloration (it's still slightly red in that area and I was done Feb 9 - you do have to put aloe vera gel on the area for 1 year).
- much lower risk of radiation exposure to the heart since you're like me and cancer in left breast
- time saved on gas, driving, work missed if that applies, etc
I didn't qualify at first as I'm 47 and insurance said too young. However I'm blessed that the rad onc is the inventor of the SAVI and he's here in Scottsdale where I live and he had the office cite American Breast Surgeon long term study for women over 45....so I just squeaked by and they approved it.
I recommend not having a stick shift car like I did, LOL. I had to drive twice a day to my appts and then back to work, and that was TOUGH. You are very bandaged up and padded, so my left arm was sticking out quite a bit and I had that constant dull pain factor. You cannot move a certain way and you have to sleep on your back or on the oppoisite side, you have to stay bandaged at all times and the site is cleaned twice a day - once a day by you if you have the weekend to get through like I did and no treatment (mine was inserted on a Wed, they gave me Thurs to recover (I was at work, but able to work ok), first 2 sessions were Fri, weekend off, then last 4 days was Mon-Thurs. The doc who invented it that I mentioned above was the RO I saw my last visit so he did the honors of pulling it out - and warned me plenty ahead of time "this is going to hurt really badly and you're going to yell and hate me, but it will subside soon" and it did.
If it works out for you, I hope you can get it. I feel so blessed I didn't go through external radiation.
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I really don't know the distinctions among the various baloon procedures. From what I have been told, it is a balloon with radiation seeds dropped in, left 5 to 10 min., then removed, twice a day.
Your experience is kind of daunting. I am not really sure that I even need it as I am 76, stage 0 grade 1, DCIS. But I am swept into the mill.
I appreciate your response.
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There are different types - mine looked like a small wisk you use in the kitchen. It goes in and then they twist it to inflate it to full size. There were 6 tenticle like things hanging off the end and those got conncted to the machine that shot the radiation pellets in it.
I got a CT scan before each radiation treatment twice a day. That took the longest - they make sure the placement is correct in your body each time. The actual hooking up to the radiation pellets takes 3 minutes. SO QUICK. That's the shortest part! It's all the prep work that takes long.
It wasn't that daunting to be honest. Most of the women felt nothing as they were much bigger chested. Only me and the other 32A types were cry babies ha!
There are a few different types, so the SAVI and Mammosite are not the same - so you may have a totally different experience. I just looked at the biggest factor which was time - 35 days vs 5 days, and I begged them to get me covered for 5 day. I work full time and overtime and there was no way 35 days was going to work out. I thank God daily I had the option for the 5 day. Some women do not qualiy for it based on the type of surgery or tumor location etc, so I feel very lucky I had the option.
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I believe I am getting the Mammosite. Our hospital was one in the trials 15 years ago. Now it is standard care. I am resigned to this and two weeks from today it will be over. then I see the oncologist. since I had a complete hysterectomy 33 years ago, I hope I don't get the heavy duty meds though I am hormone receptive. Thanks for the info.
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Something has me a little confused. No one has asked me to get any blood work even though the Lumpectomy is April 24, next Tuesday. My biopsy was over 5 weeks ago. Such a long wait due to vacations, and postponements. Do you know if it is OK to wear makeup to the surgery? I feel like I am a mushroom, kept in the dark and fed s___.
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I had electronic brachytherapy where the radiation beam is shot directly into the catheter -- no radiation seeds involved. This involved only one catheter, which was kind of large and kind of annoying, but not really painful, for the 10 days I had it in. The biggest annoyance was not being able to shower for the whole 10 days. The catheter was inserted in my BS office and removed by the RO after my last treatment. I felt no pain either time and was given ativan before the removal. Cherilynn is right, there are a lot of hoops you have to jump through involving size of tumor, distance from the chest wall and skin surface, etc. I did have a problem with a seroma which did not cause pain and is nearly gone now. Since I had chemo after my radiation, I had some radiation recall from the taxotere that has left me with a red area that I have been told is most likely permanent. All in all though, I found it to be a very easy experience.
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Oh, and I had none of the side effects (at the time) associated with whole breast radiation such as fatigue and skin problems. The only problem I had was an allergic reaction to the tape that they used to secure the catheter.
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Infobabe:
I had the contura balloon brachytherapy in November. (actually Nov 14 - 18). My BS surgically implanted it 11/11. My tumor was in the 6:00 position on the left breast. I had my treatments at 9:00am and 2:00 pm each day. Each involved a CT scan to be sure everything had stayed in place. The techs would position me on the table, the physicist would insert the rod (through one of the cathethers that protruded from the breast . A couple of times, they added some saline solution to the balloon (again thru one of the 6 catheters). After the physicist set the rod, the RO came in to double check it then everyone left the room and they started the CT scan. I would be moved in/out of the tube about 3 or 4 times and told to hold my breath while in the scanner. then the machine with the rod attached did it's thing. About 8 minutes then the physicist came in removed the rod/and put the machine into a special closet, the tech came in secured the catheters and I was allowed to go. My RO said he worked on the team that developed this system. He used to be at MDAnderson/Baylor. This was all done at the SE Nebraska Cancer Center in Lincoln. I just saw the RO yesterday, the Diagnostic mammo, from Tues. is clear. I had some hardness that I had to massage with a moistureizing lotion, I have some 'tanning' on the lower half of the breast. Everything is back to almost normal (size a bit smaller because the tissue removed was between the size of a golf ball/tennis ball. No big deal. Sure beats the alternative!!!. I am 69 and post menopausal so am taking Letrozole (aka; Femara) that I get thru the clinic. Very few SEs. If you qualify I would surely encourage you to go this route....Good luck with everything. Keep us posted as to how you are doing. I have gotten a lot of encouragment from reading the posts on this site.
Vickie
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Info,
No, they should have told you that you should not wear makeup to the surgery. You'll be in a sterile environment so makeup should not be worn.
The breast surgery center where I had my lumpectomy done called me a week before to go over everything that would be happening. I was sent paperwork with all instructions on it as well before the surgery. Have you had any contact with anyone where you will have the surgery done? If you are having general anesthesia like I did, you also have food restrictions the night before surgery.
So be sure to call someone asap if no one has given you any info. Ask for a nurse or patient advocate where you are having the surgery.
My lumpectomy was 3 months ago today so still fresh in my mind. Do you have any other questions as far as before or after the lumpectomy? And are you getting a sentinel node biopsy? Ask any questions, that's why we are all here
Cheri
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I have spoken to the hospital nurse about preparation, food, meds, etc. I have asked a couple of times about lab tests and received no direction. I called my doctor today (Sat.) and the hospital too but no one works or takes messages on weekends.
I have seen my surgeon twice. The last time on a sheet they gave me they had nodes. I told her that I thought there were no nodes since it is DCIS. She said, Oh, and scratched it off and took if off her computer. I am starting to wonder how competent this office is.
At present, I am so frustrated as I have had first a delay because the surgeon was on vacation, then my surgery was pushed back another week. It has been going on 6 weeks since my biopsy and it is playing havoc with my psyche. I am about ready to have a nervous breakdown.
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Thank you for your experience. I am 76 with a hysterectomy 33 years ago. I am too old for this nonsence.
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If you feel you can not have any faith in the care you are (or not) receiving, I certainly would not hesitate to select a second opinion with a different surgeon. This horrible BC causes us enough problems without having to question the competency of the medical staff responsible for our care. I think I can understand your frustration. GOOD LUCK!!! Will be including you in my thoughts and prayers....
Vickie
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I am giving her one more chance on Monday because I don't want this put off any longer.
One other thing, when we were at the hospital having met with the radiologist, his office was setting up the schedule with the surgeon's office and the surgeon's office said that the surgery was taking place at the doctor's office, not the hospital. When we went to see the surgeon the next day, she didn't know who said that as it was not true. It is the hospital. So I figure, I am either a jinxed patient, or they are incompetent.
Thanks for letting me blow off steam. I am trying to get ready. Found button up the front PJs and a close in the front bra at Penneys. So some things went right.
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Info, wow.....I'm so sorry you are dealing with all these crazy things. I had nothing but an incredibly smooth experience with all the docs, and I thank God for that.
OK, well you got the button up PJs and the front close bra, perfect. Two important things - and I did not know about the front close bra (so that was my one bad experience) so good for you there, that will work well.
I agree with you giving them one more chance on Monday, and I know you have had this put off and put off by them.....and you're anxious to be done. But, like Vickie said, if things don't work out Monday, stop and get another surgeon. Mine was phenomenal and I'm in healthcare and am picky. She and her office were on top of everything (except the front close bra LOL). She is also a breast cancer survivor so she was very empathetic and had so much good advice. Your office, no offense, sounds crazy out of control.
I will pray that all loose ends wrap up for you Monday, but if you have a bad feeling or anything, stop and call it off. The first surgeon I had recommended to me blew me off for almost a week and then couldn't see me for 3 weeks just for appt. Gave up and went to second choice - she got me in within 2 days and the surgery was 2 weeks later, boom, done. I hope it all goes well Monday and all this leading up to it has just been a big goof, but you're dealing with cancer so don't let them give you anymore runarounds.
You're not jinxed, sounds like they have a lot of incompetant people which is ridiculous. Please let us know Monday what happens, I'm also praying for you. I don't know where you live, but if you lived where I did I'd go kick butt on your behalf!!!
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When I woke up from surgery to implant the catheter, I was wearing a"surgical vest". This was a very tight bra that hooked up the front and had Velcro on the shoulder straps. It was surprisingly comfortable and was great at holding the catheter against my body so it didn't flop around. It was covered by my insurance. I have large breasts and I don't know
they got me into the thing while I was out, but I'm sure it was a sight to be
hold! -
I need you here in Michigan and I want your doctor. I have always thought there should be a profession called Patient Advocate; someone who would fight the battles and knows the ropes. I have a sister-in-law who is a John Hopkins trained RN and she doesn't take any guff. Once, she even had a doctor driven from privledges at the hospital because he was a danger to patients. It took a nurse to do it becasue the doctors were chicken.
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antie, I think they are going to bind me up too but I want to be ready if they dont. Besides, you need more than one. My boobs are a B cup.
Did you have much discharge? I have heard of using sanitary pads for that.
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Info, I had no discharge to speak of with the catheter surgery and very little with the lumpectomy.
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Info, there are Patient Advoactes at most every hospital. It may be something to call Monday and ask for if you cannot get straight answers. Agh, I'm in Phoenix, I'm sorry I can't do more. I'm a pharmacist so like your nurse friend, I know my way around the medical system. But it shouldnl't be that way. I actually just read an article somewhere about patient advocates specifically for cancer patients being a growing field because there are so many more people being diagnosed and living with and survivng cancer. I cant' remember where I read that article, but it wasn't more than last week. If I find it I will post it here!
And FYI like Nance I had no discharge from my lumpectomy and sentienel node biopsy and minimal with the internal radiation SAVI.
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