Has anyone done MammoSite Radiation Therapy?
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The lump they took out of me was closer to my chest wall....right breast, about 6 to 7 oclock position. Going to have my SNB incision looked at tomorrow. I dont think its healing properly. Its tender, hard, and swollen.
Isn't this place amazing CA CLOUD? And so many wonderful kindred spirits. I can really feel the love in these threads. I have no reason to be tired.... (well, it is 1 am, and I need to get my butt to bed) but besides that, I just feel emotionally spent! When will I be able to stop being "freaked OUT" and be more supportive, optimistic and strong?
I haven't even read half the threads here. There's so much.
Bless you beauties!
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Hi Marty - it's good to hear from you again and to know that things have been going well for you. Everything's fine with me, too, except for this pesky seroma that just won't go totally away. I'm so sorry to hear of your friends. They are very fortunate to have you to help them get through this time in their lives. I haven't heard anything from Jackie in ages. I had sent her an email through the MammoSIte site several months ago. She wrote back that she hadn't been well but would be back here soon.
California Cloud - I'm sorry that you have to wait awhile longer to find out if you can have MammoSite, but if it's not possible, be sure to ask your oncologist about the 3 week protocol. KAK posted about it on this thread. You may need to go back several pages to find her posts.
Hi Linda - haven't heard from you along time. How are you doing?
Mamie - I'm glad that you found this thread and that you are finding it helpful. Pharmacologically, I don't know what the difference is between the 3 different Aromatase Inhibitors (Arimidex, Femara and ? can't think of it's name right now). But for me, there was a tremendous difference in side effects. On Arimidex, I had hot flashes, terrible night sweats, joint aches and pains, and just plain felt awful. Most of these se's are gone now, except for an occasional night sweat. Please let us know what your doctor says about your incision.
Hugs,
Karen
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Hmm, I found this rather interesting: My surgeon said that the question of Mammosite radiation for my tumor "was a question left unanswered" when he presented my case at the Tumor Conference. Many said that I should not have Mammosite radiation since my tumor was ER-/PR-, HER2+ and there is no data supporting the benefit of Mammosite radiation with this type of tumor. Has anyone else been told that?
I was drawn to Mammosite radiation for two reasons: I had a left breast tumor and wanted better directed radiation to the tumor site thereby reducing exposure to my lung and heart. And at age 52, wanted to extend my future treatment options should I have a same breast recurrence, as opposed to mastectomy being my only option.
Consideration for Mammosite radiation was never a logistical issue of treatment duration--5 days versus 6 weeks, although it sure would be nice.
My doctor is in agreement with me so we are moving forward with a temporary balloon on Friday, Feb 6, and then I will see the radiology oncologist on Monday, Feb 9. It will be the oncologist's call on Monday whether or not we proceed. So I'll have the weekend to visualize and pray my tumor cavity into the right shape and thickness.
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Hi, Cal,
I haven't come across any reasons not to do Mammosite because of negative hormone receptors or HER2. The criteria stated on the Mammosite website are based on node negative, tumor size, clear margins, and age. However, I know there are other possible limitations, such as location of the tumor and breast size. The surgeon must be able to place the Mammosite with at least 7 mm of tissue between the skin, lung, and other vital structures.
I had Mammosite radiation in early January, and although it's an extremely intense week of treatment, and there is minor discomfort from the Mammosite catheters (I didn't find the Mammosite itself uncomfortable), I would certainly make the choice again, both for the convenience of shortened treatment and for the reasons you give about not wanting to rule out future options in case of recurrence in the same breast.
I would feel comfortable going forward with Mammosite treatment regardless of ER, PR, and HER2. Even though there isn't research (yet) supporting benefit specifically for your type of tumor, I don't think there is research, either, showing lack of benefit over full breast radiation. Mammosite and other partial breast radiation are still pretty new. Good luck!
Tricia
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Thanks for the post Tricia. That is exactly what the radiology oncologist said to my surgeon.
Unfortunately, I am still in the waiting mode because my HMO denied authorization to have the temporary balloon inserted in the doctor's office--or maybe it was the surgeon who turned down what the HMO authorized. In any case, I am to have the mammosite catheter inserted at the hospital outpatient center on Tuesday, Feb 10. I am not sure when I will see the radiology oncologist for his decision on the treatment.
Cloud
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Best of luck and keeping you in my prayers Cloud. Maybe we'll be doing this at the same time. I'm a bit nervous about this week. I'm still in pain with this seroma under my SNB incision, and supposed to be fitted Thursday with the catheter balloon. I am tired of pain!!! And I know I have to be strong for the week coming up!! I'm such a wuus! I have to go back and re-read this thread again....so I know what I need - i haven't been wearing anything on my breasts at all, so the prospect of wearing a bra over wear my snb incision does not make me happy.
I had the seroma aspirated last week Wednesday, and i will call again to see if they can aspirate it again. Thanks Karen.
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Headed for a balloon fitting tomorrow. Wish me luck. Seems like I'm the only one doing Mamosite on the forums right now. Is there anyone else?
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Hi Mamie2,
I am here, but not for long. I had the Mammosite catheter inserted on Feb 10 and met with the Rad oncologist the next day. After seven different scans, they finally announced that they had their minimum clearance of 7mm (the manufacturer requires 5mm). Went in today to start my treatment and the oncologist had had a change of heart--I had an mid-inner quadrant tumor and he said it was trickiest part of the breast to treat because of the lack of tissue.
We thought we had solved the problem of thin margins by having me wear a bra. The bra fought off the natural course of gravity by keeping the breast tissue elevated--as opposed to having my boob fall into my underarm! But, the final issue was the lack of tissue between the cavity and my chest wall. Well, there wasn't anything any of us could do about that. The doctor removed the Mammosite, which was nothing more than slight tug.
I am now going to go through some kind of external radiation with the same treatment length as the Mammosite. I am not sure what it is called so I guess I will try find info on it.
Mamie, I wish you the best of luck. From what I experienced, Mammosite looks very easy. I'll check back to see how your are doing.
Cheers!
Cloud
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Cal, I'm so sorry to hear about your ordeal with the Mammosite. But, I'm sure it's better to be safe than sorry with radiation because it's so powerful and damaging. It's been over a month since my treatments, and I'm just now starting to have external side effects involving my skin -- much like peeling from sunburn and itching.
I'm glad to hear you're still able to have a short course of treatment. Let us know how it goes.
Tricia
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Dear Cloud,
I spent the day (yesterday) at the hospital having the catheter implanted inside my breast - my rad onc had advised that it was touch and go by the looks of the scan. It didn't look like i had enough tissue between my outer skin and the interior edge of the cavity. I wanted to try anyway. After the Cat Scan, he announced that it was news I didn't want to hear. The depth was 3 and 4 mm the whole way across. I imagine most of my breast is gone on the bottom... and its basically a fluid filled cavity. I took it hard, and had to excuse myself with one of the girls in the office and a box of tissues. Then, they pulled the balloon out (luckily, i was still numb) and Dr. told me about a Canadian study, and offered me a shorter version of rads in my hometown where there is a satellite clinic. 4 wks instead of 6? I'm getting used to that idea. Still wearing the compression bra over the gauze still, and very tender.
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Oh Mamie,
I am so sorry that the Mammosite didn't work out for you either. I am especially sorry that you took the news with such sadness and disappointment.
I told my oncologist that I wanted the Mammosite treatment because I didn't have enough sick time to cover the 6-week version. He immediately offered the external 5-day treatment.
I am still not too sure what that procedure is called, although I did find a thread on it here. I am getting a little jaded and insisted that the oncologist's office make absolute sure that my insurance would cover the treatment. They said yes, if you are cleared for Mammosite, you are cleared for this 5-day external treatment. Later in the day, at my insistence, they did call to say the treatment had been authorized.
In my search, I really couldn't find too much on this procedure and began to get worried. Eventually, my search brought me right back here! Anyway, I am thinking that the reason we don't hear too much about this procedure is because it doesn't seem to be a profit making or convenient procedure, and of course, the candidate population is limited to small, early stage tumors.
I share my experience and my impressions just in case you have any interest, and as an invitation for comments from those who have more knowledge about this 5-day external treatment.
Mamie, we'll get thru this--like so many of sisters before us. Thank goodness we have this site to help us thru it.
Tricia, thanks for your well wishes. I'll keep you posted. My first treatment is set for Monday at 11AM and the second is for 6:45PM.
Cheers!
Cloud
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Cloud and Mamie
I have posted about the 5 day external beam treatment. I found it quite managable, and my skin is awesome, 6 months out.
The main problem I had was that you are on a hard table for a longer time, because of all the angles.
Good luck to both.
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I was recently diagnosed with DCIS last month. I had a reexicision last week. I met witht the radiation oncologist yesterday. Because of the small amount of cancer found I am a candidate for the Mammosite. We tentatively decided to do it but since she wasn't able to reach the surgeon that late in the day I can always change my mind. I am in the gray area as far as age. The studies by breast surgeons says not for anyone under 45 the studies by radiation oncologists say not under 50. I'm 48. I need to decide which way to go.
Ann
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As promised, I have returned to tell about my experience with 5-day external radiation. First and foremost, I have not had any chemo treatments, so I walked into this experience feeling great with the exception of my a tender left nipple.
From a logistical point of view, making a 60-mile round trip twice a day, during commute traffic--before and after my own work day, was bit intense, but it was only for 5 days.
As far as the actual treatments, I found them to be quite easy. I am not too thrilled with a tatoo in the center of my chest, but that would be my biggest complaint. I had no idea the "tatoo" was permanent! Now it looks like I have an ugly blackhead in the middle of my chest. Ladies, if you somehow end up having external radiation, ask if they can make the tatoo lower--it was offered to me, but I declined because I thought it was a wash-off tatoo.
My energy level dropped a little, but I attribute that to the treatment travel and work schedule. I am a little tired today, but it doesn't feel any different from any other Saturday after a l-o-n-g workweek.
My breast is a little pink and tender, but the nurse gave me a sample of a creme call RadiaGuard which soothed and numbed my breast and really helped my nipple.
I am glad that there is another 5-day rad option for those of us who fall out of the Mammosite treatment.
Cheers!
Cloud
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Yes, I have - mammosite. It finished at the end of January 2009. A spherical balloon/catheter was inserted initially, it didn't fit the cavity so an eliptical balloon/catheter was ordered and after a week, the spherical one was removed and the eliptical one inserted. The treatment then went ahead okay - with Xrays and calculations each time as the iridium had to stop in five positions for even irradiaton. Afterwards, I had severe external burn, on the nipple. Huge swelling of the nipple, discoloration (dark purple, almost black,) a lot of pain followed by black scabbing. I'd asked about the clearance between the border of the cavity and the skin surface and been told it was well within the safe limits. The Radiation Oncologist wasn't available (vacation and no alternate doctor) but his nurse told me to use Aquaphor - a sort of viscous, vaseline type stuff I bought at Walgreens. When, last week, I had my follow-up the man said I'd done the right thing to use Aquaphor, then looked at my breast and said to to stop using the Aquaphor immediately as I'd developed a fungal infection. He said to use nothing, just wait and all would be well and to see him again in a month. He didn't take scrapes for analysis. He said I would have another scabbing period. While he was away, I'd called the surgeon who said he had no advice for me. Researching, I've learned that any infection should be treated seriously. I feel a bit abandoned and frightened. The rash from the infection seems to be increasing. I don't know what to do. All I can do is wait, I suppose. I try to be bra-less and expose the breast to air as much as I can - to dry up. And have bought cotton-lined, surgical bras.
By the way, breast-feeding pads are a great alternative to gauze pads - so much less painful and easily removed - no snagging.
I'd really appreciate any advice - please. I haven't found anything about this online. I have a crisis of confidence in my oncologists.
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Yes, I have - mammosite. It finished at the end of January 2009. A spherical balloon/catheter was inserted initially, it didn't fit the cavity so an eliptical balloon/catheter was ordered and after a week, the spherical one was removed and the eliptical one inserted. The treatment then went ahead okay - with Xrays and calculations each time as the iridium had to stop in five positions for even irradiaton. Afterwards, I had severe external burn, on the nipple. Huge swelling of the nipple, discoloration (dark purple, almost black,) a lot of pain followed by black scabbing. I'd asked about the clearance between the border of the cavity and the skin surface and been told it was well within the safe limits. The Radiation Oncologist wasn't available (vacation and no alternate doctor) but his nurse told me to use Aquaphor - a sort of viscous, vaseline type stuff I bought at Walgreens. When, last week, I had my follow-up the man said I'd done the right thing to use Aquaphor, then looked at my breast and said to to stop using the Aquaphor immediately as I'd developed a fungal infection. He said to use nothing, just wait and all would be well and to see him again in a month. He didn't take scrapes for analysis. He said I would have another scabbing period. While he was away, I'd called the surgeon who said he had no advice for me. Researching, I've learned that any infection should be treated seriously. I feel a bit abandoned and frightened. The rash from the infection seems to be increasing. I don't know what to do. All I can do is wait, I suppose. I try to be bra-less and expose the breast to air as much as I can - to dry up. And have bought cotton-lined, surgical bras.
By the way, breast-feeding pads are a great alternative to gauze pads - so much less painful and easily removed - no snagging.
I'd really appreciate any advice - please. I haven't found anything about this online. I have a crisis of confidence in my oncologists.
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I was diagnosed with DCIS non-invasive. After 2 surgeries in order to get clear tissue margins I then learned I was a candidate for Mammosite. The criteria for being a candidate is pretty narrow to tell you the truth. Even if you are a candidate and you have the balloon inserted (it must be done surgically), it does not mean that you absolutely will be able to have the treatment. Once the balloon is inserted, you return a few days later for a 4-hour planning session where they do a CAT-scan to see how the balloon is in position and to be sure the criteria is met. The balloon must be able to be inflated to a point where the lumpectomy cavity is touched by it so that the radiation can do it's job where they are targeting. If the cavity is mis-shaped or there is too much space between the balloon and cavity walls, they may not be able to treat you with Mammosite. There could be fluid buildup that will cause them to either wait a few days or pull out the balloon altogether and cancel the Mammosite treatment. It's a 5-day treatment of going twice a day with 6-hours between treatments. The last day they pull out the balloon and you are done. It was worth the try even if I would not have been able to do it. I had some fluid buildup the day of the planning. They sent me home for the weekend and when I returned on Monday the fluid had dissapated and I was able to have the 5-day treatment. I had very little discomfort and nothing more than a small patch of skin that was burned like a sunburn--just in appearance, it did not hurt. My sister had the conventional radiation and her entire breast was subject to the burning. The Mammosite treatment was a good experience for me and I would do it again if I had to.
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hi after several delays i finally started mammosite on tues march17th i had researched mammosite right after surgery. no one had suggested it. i also called the surgeon who does this and promotes it in our area. she saw me 3 days post lumpectomy and said i met all criteria but needed swelling to go down to all at least ,8cm for skin. believe me i worked hard. i developed an infection and was put on antibiotics and still on them(2nd round of 20) my surgeon starts usually on day of cath insertion.,but infection and swelling cause early antibiotics. for swelling i tried blowing pretend bubble like kids in summer. i squezzed a rubber exerciser to help reduce swelling 2-3x day.i also took motrin or ibuprophen 3x daily. by the next appt, i was to 9cm. the first four days of treatment went easy and quick,I am tired in afternoon and burn where ban dages are and a little burning in breast but managable.the last two treatments are monday and catheter come out then. do to delays etc catheter will be in 12 days. also bag-balm. a green can sold a walgreens in with lotions i had already purchased for hands and feet. absolutely great for restoring skin. says on side (which i didnt know until bca,"use after each milking to keep udders smooth from vermont cold" made in usa. ironic!!!!!! my prayers are for all of you-ive learned so much since fri feb 13th 2009 from you all.
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i have crossed another hurdle to my journey.i finished mammosite today and had catheter taken out. the whole treatment phase was easy but tiring on me. i seem to have no strenth. howver,i have been on antibiotics for 20 days from pre mammosite swelling,lymphadema and infection. this caused delays in the whole process. it is now finished. my incision is deep and quite sore but no other problems as yet.please advise of your experiences thanks
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Hi watertreatment,
Congratulations on finishing your mamosite treatment! I was so happy when I finished mine. I found it tiring too, mostly the twice a day schedule and I had to drive about 45 minutes to get there. I did not have the delays and infections that you did, but it sounds like you are doing ok now. I was very tired for about 2-3 weeks afterwards, just needed daily naps. But then I turned a corner and have had my normal energy since. I had my mammosite in early January and my radiation doctor has me still moisturizing with aloe until the end of this month. I had a very mild "sunburn" but the lotion kept it under control. You can see the new skin on my breast now where the "burned" area peeled/sloughed off. I still have the minor pin-prick pains at times, but they just last a couple of seconds and are not a problem. My doc said I could have those for a few months.
But the hard part is over. Hopefully you should start feeling a little better each day, but be patient with yourself.
Katherine
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thanks revellsk for replying. i went to my surgeon today and she said part of tiredness is the fact that i had the lumpectomy,sn. 13 lymph nodes removed and mammosite in 5 weeks plus the antibiotic. believe me im not whining. mammosite was the best thing during this whole experience. relatively painless and quick. i have asked everyone why women who might be a candidate are not even told about this form of radiation. everyone i ask has never heard of it.it needs to be a part of a womens choice if they meet criteria. hope you do well.
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Hello ladies! I did mamosite rads. I finished mine the end of Aug 2008. It took about 4 months after I finsihed for my skin to heal. My nipple even turned almost black then it peeled like a bad sunburn. I still have fluid in the cavity, we are waiting to see if my body will reasorb it. I started Tamoxifen in Sept. On March 9, 2009 I stopped it. The SE were too much for me to handle. My onc ran more blood work and found that I am now post menopasual, so he wanted me to switch to Femera. I have felt better in the last 7 days than I have in almost a year. I told my onc after doing research on Ferema, I have decided to live and feel alive right now! I have decided not to take these drugs. I will place my faith in God and deal with cancer if and only if it comes back, but not today! May God bless us all and good luck ladies with whatever you choose.
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Hi all. I'm scheduled for SNB and lumpectomy on 4/6. I've met with the rad onc and she mentioned the mammosite option -- I'm hoping that I'll be a candidate. Thanks all for your posts. I know more about what to expect.
Bir
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Birenegn good luck with the surgery. Will keep you in our prayers. I hope you are a candidate for the mammosite. I enjoyed the fact that I could do it twice a day for only 5 days instead of 6 - 7 weeks of the regular rads. Keep us informed!
God Bless Us All
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I had Mammosite in early March. While it was a pain having to go twice a day, I knew it was only for 5 days. Everything was fine until the week after. I wound up with a nasty infection that is now clearing up. The antibiotic they usually give during the treatment which you take for 10 days is one I am allergic to. So they gave me a zpack which you only take for 5 days but is supposed to keep working. I just don't think it kept working to prevent infection. The balloon was in for 8 days total. They noticed a slight bit of infection when they took the balloon out and gave me another zpack but I think at that point I needed something stronger. When I went for the 1 week followup I was so sore and still running a low grade fever. They sent me back to the surgeon who said yes it was infected. He aspirated it which brought much relief and then gave me some mega antibiotics for 14 days which I am still taking.
The radiation itself wasn't bad. I worked from home during the early morning and between treatments. After I got home from the afternoon appointment I crashed on the sofa.
I don't understand why if they use lidocaine to put the balloon in they why don't they use lidocaine when they take it out. Pulling the balloon out hurt like crazy but perhaps the infection made that worse. It didn't hurt long but was intense for a few minutes. I don't think I would have gotten an infection if I had been on an antibiotic the whole time but who knows.
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I had MammoSite Feb. 23-27, 2009. I only live 9 miles from the radiation center so the twice daily trips were no biggie. The catheter was a bit of a nuisance but the actual radiation was a piece of cake. It took about 15 min. twice daily (except the first time) from the time they did the scan to make sure the balloon was still in place until the radiation was finished. Yeah, I agree that they should do something to deaden you when they pull the catheter out, but it was over very quickly. I have had some peeling and some hard lumps around the SNB and surgery site, but my doctor says everything is progressing just as it should and will be fine.
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Oh yeah....was a bitch coming out! Mine was in for nine days before it came out and I already had scar tissue growing around it, so after yanking and pulling for about 10 minutes I just told them to let me bite on a towel and you pull with all you have....just get it out. I also had an infection set in which took about 3 weeks to clear up. They should start you on anitbodies from the start I think. I also lived about 9 miles from where I did rads, so it was not bad. Still have numbness on my underarm to my elbow on the left side, onc said they propally cut some nerves doing the SNB and it will always be that way, Great!!!
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Had Mammosite in November and had no problems. Yes, fatigue but I took my naps! Just want you to know that be prepared for the SNB!!!! Ask your doctor if he can give you something the day before to numb the area because it isn't pleasant. I only had 1 lymph node that showed up and it was negative. Had the lumpectomy in October, Mammosite in November, started chemo (my Oncotype score came back a 51) in December and just finished. Fatigue from the Mammosite was nothing compared to the fatigue you get from chemo! Wish you luck!
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My experience with Mammosite was not a good one. When the balloon catheter was placed in the doctor's office, a major vessel was ruptured and I bled like crazy. Next, 3 days into treatment, the balloon ruptured on a Friday night, and I had to go all weekend before anything could be done about it. Then, after treatment and the catheter was removed, I developed 2 non-healing wounds (one of them the catheter insertion site). No one seems to know what the other wound was from (I think it had to do with radiation but the radiologist says no). After three weeks of extreme pain and tenderness from the wounds, along with 3-times-a-day dressing changes, the surgeon decided to take me back to surgery and excise the non-healing areas, which left me with a 3-inch incision in addition to the two scars I already had. I believe the process needs to be fine-tuned further (especially catheter insertion). Also, the scheduling needs to be Monday through Friday, so that if something happens on Friday, you don't have to spend the weekend in limbo, waiting for someone to help you. I would be very reluctant to have Mammosite again.
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After my contura balloon insertion caused a hematoma and i went to ER and had to be treated for blood loss and hypotension....became anemic...i would never suggest this method to a big breasted woman and here is why. I later consulted a radiologist for whole breast radiation and he was very experienced from the Cleveland Clinic. In his opinion, large breasts need whole breast radiation with a grade 3 tumor. No matter what the size, if you have an aggressive IDC grade 3, don't fail to consult for whole breast radiation. Cells can travel to the top of the breast and balloon therapy doesn't cover that in large droopy breasts. Perky breasts are easier to cover with balloon therapy or small breasts too. That's what i was told. Now for the hematoma, i think they wounded me on insertion, because i drove home and then to the ER. I was covered in blood to the waist. I even fainted on the cot in ER. The BS blamed it on my blood thinners, but they had been discontinued as ordered. When he did the exchange of the tube and inflated the balloon, i believe he wounded me into tissue area that had been biopsied. It was very painful, i suffered, the wound took a month to stop draining, bleeding, oozing.. my breast is still black and swollen in the lower quadrant. On to chemo now, then rads.
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