Savi radiation treatment
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Hi Tampa, just one more voice here weighing in on your question - I'm glad I did SAVI treatment and have zero regrets. Mine was 3.5 years ago.
I agree with Ceanna's point that not every RO does brachytherapy, and you may end up with a different team if you go that route. I did my SAVI treatment at a different center than where I started because brachytherapy was not available there, and both my surgeon and the RO I initially consulted with felt that I was a perfect candidate. I really appreciated that that RO put my best interests ahead of keeping me as a patient. Best wishes to you with your appointments and decision-making.
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I'm so unbelievably sad right now. Everything was going so well. Or so I thought. I can say right now within 2 days I know what it's like to have the Savi device inserted and extracted.
Wednesday the device was inserted. Speaking with the surgeon, I was the ideal candidate for this and she said that her and the radiologist have differing views. She gave a lot of good info and confirmed a lot of items I'd researched. She did say there was a 5% chance it doesn't work...but I don't think she said a 5% chance it is in the wrong place. Regardless, I started antibiotics Tuesday night and inserted Wednesday. No issues; really not any pain to speak of. As she said, she could take care of the pain, just not the pressure and it was limited pressure.
Today, Thursday, I go for the staging and measurements with the plan to start radiation on Friday. If all went according to plan, radiation and the Savi would be done and out next Thursday. After staging they ask me to stay until radiologist reviews. Wait 30 minutes and find out he doesn't think it's in the right place. He has no numbing medication nor does he feel he can move it. My surgeon is in surgery. The option I'm given is take it out today and then redo in July after this heals. I broke down. I'm still crying. Not going into work today. This is like a setback to what I thought would be done. I know things like this happen, and I'm not exactly sure why I'm so crushed except I know I do not want to do 7 weeks of radiation.
I did speak with the surgeon. She said she can't really have moved it because of the tissue and inflammation and recommends I let this heal and I can retry in July. That means I heal the next 4 weeks and then have to have the Savi inserted again and hope that it is in the right place. She said this go round they'd do a cat scan first. And then restart the process which really is 9-12 days with prep and weekend and healing. The surgeon's office tells me this is the first time this has happened. Not really comforting for me.
I think it's so the mental as I thought the radiation would be done by next Thursday; now it's an unknown. And a lengthening of the next stages now - Savi, radiation and healing. This the worst and longest I've felt sad since the cancer diagnosis so I need to shake this off, begin healing, restart walking, and return to work.
I see the oncologist this month. My guess is she'll hold off the hormonal therapy medicine until the radiation is done...Cancer is all about curveballs. I just have to keep reminding myself that it is OUT....
Thanks for letting me vent. I've cried harder today than I have in months....
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Hi Tampa, I'm so sorry to hear what you just went through. I wish I knew something helpful to say...you are right that there will be curveballs, and we all have our moments when a good cry is needed.
I have never heard of a SAVI device being put in the wrong place, but then I really only have my own experience to go on. Again, I'm so sorry. I'm a few years out from my "active " treatment, but I do remember how overwhelming and frustrating it all can be. Keep in touch with us here and vent as much as you need to...best wishes for good rest and healing, K.
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tampa59 - Sorry to hear about this news. Its been just a year since I had my radiation. My procedure used Contura catheter instead of Savi. At the time of my lumpectomy, my surgeon placed a balloon catheter within the cavity. 5 days later under local, he slide the balloon catheter out and slid in treatment catheter. Started my treatments 3 days later. At the end of 5 days, deflated the catheter, slid it out. Very little discomfort.
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Tampa, I'm so sorry. Have that good cry. You were psyched up for the SAVI and being done next week and now the "unknowns" are back. I wish I had some great thoughts to share with you, but I'm sad right along with you. Are you able to talk with the surgeon again when you've had a chance to regroup from today and see if there are additional options? Since the device was in for such a short time, perhaps you'll heal faster and can repeat sooner. Perhaps you can look at it this way--With early July insertion and 5 treatment days, you'll still be done sooner than if you did 6 weeks of traditional rads--and now you know the pain can be managed!! Please share when you can how you're doing and what next steps you take. Treatment is a process and this one is taking longer than desired! Hang in there! Blessings and extra, gentle (((((hugs))))), Ceanna
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Hi, Tampa,
I am so sorry and sad, too, that this happened to you. I have never heard of a SAVI being in the wrong place, but I guess it can happen, since it happened to you!
I would be in tears, too, because this is quite an ordeal to go through. Feel free to vent. We all understand, and, literally, “feel your pain". It is bad enough to go through SAVI placement once, but twice in such a short time is unbelievable!
Have courage, Tampa.
We are all anxious and concerned for you and hope your treatment will be able to be resolved for you soon.
As Ceanna said, we send warm thoughts and gentle hugs your way.
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Ah, Tampa, I am so sad to hear of your experience. I can only imagine your pain, disappointment and uncertainty about the next steps. I was treated with SAVI the last of February through first of March (8 days total with weekend). Minimal pain with insertion or removal; I took a few of my hydrocodone left from January lumpectomy, then Tylenol, then nothing. I agree with Ceanna that trying it again would still seem easier than 6 weeks of external radiation. I am pleased with my results cosmetically, after 3 months, as well as the experience itself. A friend who went through external radiation (with good candidacy for SAVI, but her RO did not use it), suffered a fractured rib and skin issues. I'm hurting with you and hoping for much better news regarding your upcoming treatment. This site is wonderful for support and information, and I was encouraged by so many while I was undergoing SAVI radiation.
Best wishes to you, thoughts and prayers. Keep us informed.
(Also, if you live in Tampa, I live very close to you. There are very good physicians here.)
Mielli
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Hi girls; sorry about being absent from the forum, having two big art shows back to back, hardly been able to sit down and check in!
Tampa, I too am sad for you....but be encouraged. I had a big delay in my procedure too; the surgeon did not get all of the tumor out, then went on vacation; there was almost a month between the two surgeries, and I had healed up pretty good. Then, back in again....sigh. And the insertion of the SAVI was really painful due to all the scar tissue from my breast reduction done years ago, and I had no meds to help (I got to hear those words too, "it's never been that difficult for anyone before". Yeah, great. I had treatment that involved a holiday weekend, so it took a little longer. But, I'm very glad I had it done, and you will be too; this delay means they will DEFINITELY do it right this time.
I'm now 10 days post-removal; that went smoothly, and I have this little perfectly round hole now, which is sort of healing. No drugs or antibiotics needed. I've shown my SAVI to some friends and visitors coming to my gallery...all the men turn away, they can't entertain the notion...cracks me up. I had no skin reactions, was a little tired for a few days, otherwise, no ill effects.
Hang in there, dear! This technology and treatment is an amazing advancement, and has now been confirmed by that huge study. July will be here before you know it.
Cynthie
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huntingal, good to see you back - I knew you had art shows going on so I figured you'd just been busy. Hope the events were a success!
Tampa - I had my SAVI during the same week as huntingal and like her (and everyone else) was so sad to read about your disappointing experience. I remember that when I went in the first day for my "scan & plan" after having the device inserted, I was cautioned that if the device moved or shifted too much overnight before we began treatments it could result in having to withdraw it and start all over. So I guess it happens. But it sucks big time. Hope you are able to start again without incident sooner rather than later. (I was fortunate - my SAVI experience was pretty smooth going and my little scar is healing well, my other incisions healing well, my breast less sore every day, and my RO has given me permission to resume upper body exercises within reason and starting lightly; the big caution is 6 weeks of no bouncing/jouncing of the breasts - no problem; and wearing a supportive bra - no problem).
p.s. Post-SAVI-Brachy - I finished 11 days ago and I have to remind my friends that no, I am NOT "done" with breast cancer (one never is, right? It can come back to bite us in the butt later on). I'm in the "what's next" stage. Because I am ER+99%, I require endocrine therapy for 5-10 years. Saw my MO last week for the results of my OncotypeDX test and his recommendations. Unfortunately, my OncotypeDX # is 24 - at the high end of intermediate; it falls at the top of the chemo-not-necessarily-required range (clarified by the TAILORx study). Because my tumor was very small and I had no node involvement and clean margins and we caught this sucker early my MO intimated without "telling me what to do" that going directly to Letrozole (his AI of choice for the first drug to try) and foregoing chemo would be the prudent choice. Still wrestling with it a bit but I am inclined to do just that. I cannot start the drug until fully recovered from the SAVI which, according to the MO, will be June 20.
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Hi Irishgirl71, so glad you're doing well. I start savi radiation today. Was glad to see you were triple negative also. My RO wanted to Also do 16 external treatments but surgeon oncologist specialist in breast cancer said no way. After his explaining my pathology report I feel this is the right way to go. My insertion was a breeze. Also a lot of drainage. The Savi device is uncomfortable but tolerable. Will be glad when I can put all this behind me. Ceanna thanks for your support. It sure does help having this site to share thoughts and concerns with others that know how we feel. Will let you know how it goes this week
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lovemyyorkies,
Welcome! Glad that you find this site helpful, as did I. Most folks don’t know what to expect and this place is a great source of comfort and encouragement and a place where you can vent.
So, you are starting treatment this week? It will go very quickly and I am sure your “team” will take good care of you.
Yes, I found the SAVI to be uncomfortable. You are always aware of its presence, and I was told I could not sleep on my side (my favorite position), so as not to dislodge or move it, so I had to sleep on my back with the help (sometimes) of a “boyfriend pillow”, as my surgeon called it. (A bed reading pillow with arms). That was probably the most uncomfortable thing about it.
The treatment itself is not painful, and the nurses were very careful when attaching and detaching the probes and dressing the wound. I had very little drainage (until the day they removed it and some gushed out). I did not like wearing a bra 24/7, or not being able to fully shower or wash my hair, but you do what you can.
I am grateful that I was able to have this treatment and am glad that you were too.
Best of luck this week. Remember to rest and take care of yourself. We are here for you.
Sending soft hugs your way
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Lovemyyorkies - Irishgirl71 covered everything I can think of (I finished SAVI on 5/30).
A couple of comfort things:
Bath wipes (like you take camping) are great for “bathing”
If you can get to a hair salon once or twice for shampoo and blow out it’ll make you feel like a million bucks. (Or a friend who will come over and shampoo you at home can do the same)
My radiation practice provided the bra and I actually wear it now for comfort in evenings and when walking or doing light workouts (still on doctor ordered activity restrictions). It’s a fruit of the loom front close (lots of hooks) bra. I love mine. Blood and drainage fluid washed right out (there will be some)
Eat well. And walk a lot! it is best thing for healing your wound!0 -
p.s. here the bra. Wal Mart usually has them and of course they’re on Amazon.0 -
Lovemyyorkies, glad the insertion went well and all the best to you through the treatment week. It's uncomfortable, but doable, and the week will go quickly with the twice-a-days keeping you occupied! Patsy summed it up well, use some large wipes and, if you can, get hair washed in a shop. Bending over to wash it yourself can be painful and not great for the placement of the device, depending on the direction the device is in your breast. Take it easy, but do try to walk and do whatever you feel up to. I did most everything I normally did but lifting, cleaning (vacuuming), showering, or exercising (good reason not to do cleaning!). I drove, took walks, had lunch between treatments with friends, attended meetings, and relaxed. I had the advantage of having rads in the winter, so I wore a breast wrap under a fleece jacket and most people were unaware of my treatment. I just had to watch for jumping children and dogs, and not bumping into people. Gentle hugs, Ceanna
PS - Here's the type of breast binder my center provided and I ordered a second one so I could wear 24/7 and wash the other. It had Velcro opening and pretty snug to hold everything in place. During the scan and treatment, I could just undo the Velcro and didn't have to even take off my jacket. Maybe doesn't apply in summer, but those treatment rooms are always so cold!!!
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Hi all, the Fruit of the Loom sport bra that Patsy posted is exactly what I wore during my SAVI treatment. Bought two of them at Wal-Mart - I even found black with sporty purple and pink trim. And I continued to wear mine for a few weeks after treatment because it was more comfortable to feel a little snugger than a regular bra.
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I wore the same bra, purchased on Amazon, as suggested by Patsy. I bought three, and I hate to admit it, but a year after treatment, I still wear one while doing yard work or other activities, as it is much more comfortable than my “regular” bra.
The camping wipes sound great, too. I had a handheld shower that I could use on most of my body parts but had to be careful not to wet or splash the SAVI side.
I did wash my hair in the kitchen sink using the spray hose when it was absolutely necessary, but it was cumbersome so if you can get to a salon or have someone help you, that would be great!
Take it easy, take it slow. One day down already.
How are you doing
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Both treatments went well today. What I'm bothered with is my right arm aching. Shoulder down to elbow down to little finger. Anyone bothered with this? I did order the same sport bra you pictured. Seems snug feels better than loose. My Savi is large and uncomfortable with some burning sensation today after second treatment. Hopefully this won't get worse.
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Lovemyyorkies, I found that treatment was more comfortable during the first & last days, with those in the middle less so. Are you positioned with your right arm over your head prior to & during radiation? I had some aching in the area you're describing due to my positioning during the CAT scans & the radiation. I think it was exacerbated by my attempts to keep that side relatively still during the rest of the day so as not to disturb the position of the SAVI. Once it was removed, the discomfort quickly disappeared. (And I was thrilled to be done with radiation so quickly!) Good luck & hang in there; you've got this!!!
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Thank you Jkl2017. I think that is what is hurting my arm. Ready for day 2 with no pain this AM. The days will go by fast and then I'M DONE. This group had helped me to understand and be informed as to what to expect. Thanks everyone
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I had a mild burning seansation in my breast, also, and irritation around the nipple because the SAVI was pointed there. I had a large SAVI also. I did not have arm pain, but they did have two bars for me to hold above my head during treatment. The nurses did tell me not to clutch it too hard so as not to strain the muscles. Maybe that is what happened to you.
Almost done! Take it easy on yourself and relax during treatment (as much as possible without moving! :
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Lovemyyorkies.. I hope your day two went better and you are not experiencing the same muscle ache and burning. I had a bit of aching, but after talking with the nurses who set up positioning, they placed lots of pillows and foam supports around me from day two on and I did not experience the same problem again. They were such nice people and did everything to make me comfortable. Hope you are having a similar team!! All the best!
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Maybe since we're all wearing Fruit of the Loom we can think of ourselves as a bunch of fruitcakes. Kiki13 - now I have bra-envy! I'm going to have to check the colors out on Amazon!
Lovemyyorkies, I'm glad all is going well, or at least as expected and in a manner that seems pretty much in keeping with the experiences we all had. I had some aches in my shoulder and arm, too, and I'm guessing it was because it was raised for so long during the pre-radiation scans and then during the radiation period. It'll all be over before you know it! If I'm counting right, you'll finish on Friday, is that correct? Woo-hoo! If not, then enjoy the treatment-free weekend. (I had a 3 day weekend - memorial day weekend) in the midst of my treatment and believe me, that weekend seemed endless!
Keep us posted.
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Ha, that's cute, Patsy! The SAVI fruitcakes. I do remember it brightened my day as I was getting ready for treatment, finding those pink and purple bras in Wal-Mart. 😊
Lovemyyorkies hang in there- you're right, the days will go fast! Rest, find things to keep your mind off the device, and let others help you (I had to make myself do all of these!)
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Lovemyyorkies, how is your radiation coming along? Has the discomfort lessened? Hope you're nearing your last day & having your SAVI removed. We're here to celebrate with you when it comes out - keep us posted!
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Its going better. I finish tomorrow. I like the idea we're frut cakes😂. So glad this is all the treatments I needed. Everyone here is a blessing and encouragement. It has helped me get through the week
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Glad to hear it's going better. We'll celebrate with you tomorrow!!!
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Fruits and nuts, Lovemyyorkies! Not to make light of all of this, but humor really helps. Just think - you are almost done!!!
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Celebrating Savi free!! When do most of you shower. They said a week. I don't think I can go that long with bird baths. Will see BS July 9. I'm still confused about pathology report. He said I didn't have true TN but DCIS with microvasion. Will get him to clarify. Will be glad to get back to walking
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Did anyone have steristrips applied? I have them on and worry about fluid build up again since it can't drain. The removal went pretty easy. About the time I said ouch it was done. Still tender but grateful it's over
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livemyyorkies,
CONGRATS! Now the healing begins.
I think I took a full shower 48 hours after removal. They just told me to be careful of the open wound and not wipe or rub it, and they gave me special gauze strips and told me to use triple antibiotic salve on it until it healed completely. I did not have steristrips on the SAVI site since it was a small hole and I had very little oozing except for the first couple of days. It healed up nicely and I only have a tiny indentation where the site was. It is just a small dimpled line and that’s it. I don’t know why they told you to wait a week to shower fully. Did they give you instructions on how to treat the wound and what’s complications to look for? Do you have a large incision? Maybe they were being very cautious about possible injury to the area by bathing or scrubbing too vigorously.
In any case, be careful and take your time. You may have soreness and swelling for quite some time. Take it easy.
(Hugs
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