Savi radiation treatment
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Hello everyone,
I hope you all are doing well and that this year will be happier and healthier for all!
I did get to visit my daughter in Tampa, and spent a wonderful week there. I was still healing and doing wound dressing, but miraculously, by the time I returned home my wounds were finally closing up!
I begin radiation therapy today. Not looking forward to more abuse of my newly healed breast, but it had been put off for so long and the RO did not want to wait any longer, for fear of any errant cells growing.
patK and PatsyKB what’s up
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Irishgirl, good to hear from you and that your wound is healing. I hope rads went well today and do not hamper any healing. Let us know how you're doing in rads.
How are the rest of you ladies doing?
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hi all had SAVI put in. Had 2 days 4 treatments. Then told to massage SAVI over weekend. Anyone know anything about that? I do have a lot of fluid.
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Glad to have you here Jkh, but sorry for the reason for the treatment. You're almost half done!!! The massage is to keep the fluid from building up and allow for drainage. Hope it is going well for you over the weekend. Always a little more stressful when you don't have the daily contact with the nurses who dress the wound each day. Ask away if you have more questions, and please let us know how the rest of the treatment days are going. All the best, Ceanna
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hi thanks for your comment and great answer. I was able to sleep that night. The massaging did work. Still leaking like a waterfall. Today is my last day. The savi will be pulled out. Fingers crossed.
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hi all — Savi out after 10 doses of rad 5 days with a weekend in between. Was not awful. Onto inhibitor Letrozole. Good luck to all
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jkh, so glad to hear your updates and that the SAVI is out and you did well!!! All the best for quick healing of the wound. Mine took a few weeks to seal and heal, but now just a faint scar. Glad you could be done with rads in 5 days. Keep us posted. Gentle hugs!!! Ceanna
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Hi Everyone, I found the site around 2:30am this past Wednesday as I lay awake worrying about my SAVI implant scheduled for Thursday. I’m wondering how you all have coped with the device poking out, do you feel like it is secure and how to care for it so you don’t have complications. I’ve had a really rough time with ALL of my nurses/doctors not supplying helpful information. I wasn’t told to massage it. I’m wondering if it is staying in place ok - when I peek under the gauze it seems like more of it is poking out. It was implanted Thursday and treatment starts Monday. I’m pretty uncomfortable. And, it points out directly in front of me. Wearing a shirt is pretty hard to do. A co-worker donated button up shirts from her husband so I just stop buttoning under my breasts. I’m single, supposed to be working and really bummed out.
How did you all cope with wearing clothes and being out in public?
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mdpitts, welcome to this thread but sorry for the reason you're here! I'm not real sure about what to do if it is sticking straight out in front of you, but it sounds like it is under gauze so secure. Mine went in on my arm side and so the wires could be tucked into the breast binder I wore. I've posted pics of the binder before but I'll do again since you're new. I got one from my breast center after surgery and bought another through them (Amazon also has) so I could wash one, wear one since I continued to wear it until my wound healed over in several weeks--I am a DD cup and it worked well. I could wear it instead of a bra and wore it under a tank top and fleece jacket. Don't think anyone could see I had the SAVI in. Don't know what you can wear to work, but maybe that would work for you. You just need to be cautious that you don't bump into anything with the device in.
If your treatment is like mine, you will have to have CT scans before each treatment to check on the placement of the device to ensure the rads go where they should. It goes fast, as does the actual rads, so each twice-a-day treatment will go fast. I'm disappointed the nurses weren't more informative for you--keep asking them, or ask here.
I hope you got advice from your care takers so you know what to do to care for yourself over this weekend. You'll need to change the dressing over the weekend, but the nurses will do after each treatment. If not, send me a private message (option on blue tool bar on left screen top) and I'll try to answer any questions you have.
The massaging is helpful if you are building up fluid. If not, and I did not, you don't have to worry about it--the wound will drain itself if the wound remains open until the device is removed.
If you're not on preventive antibiotics, please ask your doctors Monday. Just a precaution, not a requirement. You need to keep the wound dry, but, believe me, you'll really love that first shower you are allowed to take after the device is out. Meanwhile, I carefully used a handheld shower on my lower half, and large wipes for armpits, etc. Just be careful. I accidentally pulled out one of the wire plugs (not a problem).
I hope all goes well for your rads next week. Just think, if you have 5 consecutive treatment days, by this time next week, you'll be done!! Please ask away if you have questions or problems. All the best, Ceanna
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Thank you for the reply and all the great information you provided. I had my first radiation session today. All went well. I was really worried that my SAVI device had shifted downwards after the weekend but it wasn’t too bad when they scanned it. The first session took 3 hours with all the measurements etc. and the afternoon was an hour. I’m relieved that I’ve only got 4 days left now.
Here’s a hair washing tip - if any of you have an inversion table (Teeter is one brand) position your head over the sink and have a friend wash your hair. No muss - no fuss
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mdpitts, glad your first rads went well and hope that you continue to have a good week. Yes, washing hair is an issue. I used my handheld shower head and could lean in enough to wash over the tub. Hope you have some clothes figured out, but sorry you have to work during the treatments. Congrats on being 20% done!!! Please let us know how you're doing this week.
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mdpitts, wondering how it went and are you finished with rads? Update us when you can. Hope you're healing well and enjoyed that first shower after SAVI removal!! Take care. Ceanna
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Hello fellow SAVI sisters! I had my lumpectomy 1/28/19 with lymph node removal, thought not bad, I can do this. I then had my SAVI put in the following week with starting radiation 2/4/19. I thought it was really painful, used pain meds for two days. I dont know if anyone else gets nausea after treatment, but I do, maybe an hour later, and I need to take phenergan. I keep telling myself only 2 more days (4 treatments).
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sunroomyellow, welcome to this thread, but sorry for your need to be here! Hope your treatment today went well and now you're down to one day left!! Sorry you are having problems with pain. I had more an uncomfortable feeling but everyone's pain is different and depending on those lovely nerve endings!! I was not nauseous, but again, everyone is different. I hope your device removal goes well and your wound healing fast and pain free. I'm sure you're looking forward to getting in the shower again!!! The favorite thing for those of us who went through SAVI!!! Please let us know how you're doing and if you have any questions or problems. Gentle hugs, Ceanna
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I had a five day rads - twice a day.
Except few times I didn't feel the vibration in my cavity. I am wondering if the seed really went into the cavity the other times when I didn't hear the vibration.
Last treatment the doc fixed the key himself to the rad and I was able to hear clearly the vibration sound.
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Karmic, sorry, it's been a few years and I can't say I remember a vibration. I just vaguely remember the clicking noises as the seed went thru the tubes, but I can't tell you if even that was all the time. It's a question only the radiologist could answer. I'm glad you're done and hope you heal quickly from the device wound. I'm sure you enjoyed that first shower after its removal!! All the best, Ceanna
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sometimes, I felt a vibration, but not others. But, I was told that the doctor and staff observe every procedure and watch the seed go through each catheter. One time, one of my catheters was kinked a little and an alarm went off, sending them in to check each line and reset the machine. I would suspect that the procedure is well monitored. I would discuss this with the RO to ease your mind though.
Congrats on the end of your treatment! Rest and heal. You will feel some swelling and discomfort for awhile, so don't overdo anything.
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Karmic108 - saw your message in my inbox and also your questions here; I felt a tiny vibration sometimes; not in each catheter. Not so much a vibration as a light "bump." Not sure how to describe it. I have a feeling that one's sensations of the SAVI process might depend upon where in the breast tissue the device is placed. I wouldn't worry if I were you but DEFINITELY discuss with your RO or whoever your primary doctor is in order to put your mind at rest. Customarily, the radiation oncology staff, the doctor and the physicist (or some combination thereof) are watching and monitoring carefully.
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Late reply to your "what's up" Irishgirl711 - all's well. Creeping up on 1 year since surgery (May 7). Latest screenings clear. Fingers crossed this will continue. Day by day.
Hope you're hanging in there too.
Onward!
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Finished six week radiation treatment post second lumpectomy/reconstruction on February 28th. I developed “radiation rash”, but that was expected. I am healing well, but have discomfort from a “biozorb” device inserted in the tumor cavity to mark radiation site and also to give “structure” to the breast. Reminiscent of the SAVI device, but smaller. They say it will be reabsorbed within a year or so.
Otherwise, all is well. Just waiting for the complete heal and Summer! I have had it with treatment and doctor visits.
Glad you are well, PatsyKB. You are right. One day at a time.
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Hi All.
Let us help future women who might get this device put in their bodies without proper discussions pre-surgery or at least force the maker to address the problems with their device. My radiation oncologist said the device made no difference to him and he thought it was unnecessary for his treatment for me. Again I am so happy that it was removed. I would rather lose my nice looking breast than have pain! Although, now I look tough with my surgery breast...so don't mess with us cancer survivors! Thanks to my surgeon, I am feeling so much better
FDA info:
Best to email questions on medical devices than to call DICE@fda.hhs.gov
Complaint forms are online but I am not allowed to post the link. So go to their website, search "forms for reporting to FDA". Then I believe the correct form for us is "FDA Form 3500B".
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Hi, I really appreciated your post. I found it very helpful. I had my lumpectomy which included removing some lymph nodes last Wednesday and although I'm a bit sore, I am quite surprised at how comfortable I am. My good news is all margins were clear as were the lymph nodes. I will be having my radiation device implanted a week from Thursday and treatment the following week. Thank you for sharing your experience. It is very comforting to know what to expect.
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Hi Phoeboo, and welcome to Breastcancer.org,
We're so sorry for the reasons that bring you here, but we're really glad you've found us! Our community is an amazing source of information, advice, and support, so thank you for joining and posting!
Please come back often, ask lots of questions, and share your experience. We're all here for you throughout your treatment and sending you healing thoughts for a successful recovery.
Let us know if you need anything at all as you navigate the boards, and welcome again!
--The Mods
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Phoeboo, welcome. Sounds like you are doing well after LX. If you have any questions about SAVI radiation or just need to talk, please feel free to post here or Private Message me. All the best. Ceanna
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I am four years out from APBI, I had the catheter placed on a Thursday, and started therapy on Monday, two times a day for five days. For me the worst part was that weekend in between. I wasn't in a lot of pain, but it was uncomfortable, sleeping sittting up was hard, and it kind of weirded me out to have that sticking out of my body. What I hated was having to clean the insertion point (at armpit) at home, alone over the weekend, twice daily. I was so afraid of getting an infection. I am lucky that my job allows me to work from home. Even sit baths get old after a week!
A week after treatment I developed radiation burns. I had not been warned about that, and was on vacation in New Orleans, in July, not a place to be when you have radiation blisters (it was about 95 degrees every day! Sweating and blisters are not comfortable). On this same trip I developed Mondors Cord from just below the areola, down the breast to about three inches below, something else I had never heard of. I don't know if this was the result of the lumpectomy or the radiation. Again, not painful, but uncomfortable. It AUDIBLY snapped about a week or so later, which provided a lot of relief.
The one thing that no one told me about, but, several doctors have told me since is a “known side effect" of brachytherapy radiation, is the fibrosis and necrotic tissue I developed where the catheter was. I noticed a very hard lump about three years out, and it was visible (only nude) and somewhat painful four years out - this increased visibility could have been due to recent weight loss. BS suggested massage, which was painful (so probably didn’t do as much as I should) then PT, which could also be painful (why is it easier to have someone else inflict the pain?). It would start to dissipate only to return the next day.
I was surprised that with all my research, multiple appointments with BS, RO, etc, (they were very patient with me), and various second opinions, this never came up.
I am now one week out from having reconstruction on the left breast, removed the fibrosis and necrotic tissue, redistributed the remaining tissue (not much, with the weight loss, I was down to an A cup), and had silicone implants placed to even things out. I understand it is risky to work on radiated tissue, my BS recommended a PS with experience with this, and she felt that I am a good candidate.
I had my first follow up two days post surgery, and didn't really spend a lot of time with PS, and it was first day without pain killers, so I may still have been a bit scattered. I hope she books a lot of time for my follow up in five days as I have a lot of questions after reading other stories. But, so far, everything is going great, wearing the surgical bra at night, and a sturdy, UNDERWIRE, sports bra by day. PS said I should do this to help the left pocket - one of myriad of questions I have for her, as I everything I've read strongly suggests not to use underwire. Which makes sense, since it is rubbing on the incision.
If you are considering any brachytherapy radiation, ask about the risk of developing fibrosis and necrotic tissue
I should add that the dermal fibrosis and fat necrosis that was removed all tested benign!
Good luck everyone
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I have read through most all the postings and I am so grateful for all that you all have shared. I have my first visit with the RO this coming Wednesday. Since I am a good candidate for brachytherapy I am already scheduled to have the device implanted the following day. I will start treatment the day after Labor Day. We will be staying in a hotel with a full kitchen for the course of treatment to be near where it is done. I expect to be uncomfortable and can see from reading different posts that it is different for everyone. Since we live a good distance from the place where therapy will take place, my husband and I will be staying at a hotel with a full kitchen nearby the RO office. I would appreciate any suggestions you all may have that will help me get through more comfortably. I plan on preparing main meals ahead and freezing them. Thought of things like protein smoothies and such, but not even sure what to expect as far as appetite goes. My head just swims thinking about the whole thing. Looking forward to putting it behind me and moving on to the healing process.
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Phoeboo, glad you've read the many postings about our experiences and hope you found them helpful. Everyone is different as far as how they feel, and their experience with SAVI. I was uncomfortable, but able to do most everything except lift anything heavy--let your DH handle the luggage!! One of the hardest things is not taking a shower, so with you staying in a hotel, you might want to consider checking if they have a handheld shower, any nearby hair salons for getting your hair washed, and also, possibly, figuring out the most comfortable position to sleep. You might want to get some bigger wet wipes for body washing if you can't figure out a way to keep the wound area totally dry at all times. I was able to lay down, but I've heard of some who use a bed pillow to prop themselves more upright. If your breast center has a nurse navigator, you can also check with them about suggestions for dealing with being in a hotel.
Preparing meals ahead is a great idea, and also ensures you have something you like if you don't feel well enough to go out to eat. I felt pretty good and was able to drive, and didn't have any problems eating out, or preparing my own food, but since you're not home, it's great you're planning ahead. Just eat healthy, and no junk food, even when that might seem like the easiest. If you're like me, they'll put you on an antibiotic while you have the device in, to prevent infection. Keep that in mind if you have a problem with antibiotics, but I always find having plain yogurt, non-sugary, helpful for the digestive system.
Take along a good book, or three, or your favorite hobby/craft, or a puzzle, but don't think you have to stay indoors or just sit. If possible, walk, sit in a park, and enjoy sunshine if you have good weather where you're staying. While not a vacation, it is good to treat yourself to a time to relax. I can't say I felt more fatigue, but I made sure I got enough sleep, which may be harder in a hotel! Throw in a movie, a pedicure, and other non-strenuous activities, and it will help take your mind off the rads. If you're like me, you will have twice-a-day treatment with hours in-between to do something special. Just keep some hand sanitizer handy--you do not want to get sick in the middle of treatment!! You might want to consider taking along a little pillow to pad yourself from the car seatbelt if you take a drive, or for on your long drive home.
The rads, themselves, go fast--it's the CT scan before and setup that take a little time. Do ask the nurses to make sure you're in a comfortable position. I asked for extra pillows for my arms so they would not go numb in the positions they wanted me in even when that only lasted a few minutes.
Since it sounds like you will have an extra day over the Memorial Day weekend with the device in, it's important you talk with the nurses who will pack your wound after the device is implanted, and ask them very specifically how to care for the wound over the long holiday weekend. You will need to clean the wound and redress it daily over the weekend--they will do that on the days you have treatment. Have a backup plan with hubby if dealing with a wound bothers you. I had a little incident when one of the plastic tube caps came off over my weekend, and I hadn't asked about that (learned it was not a problem, but it worried me a little until I knew!). I check these BCO threads most days, so ask away here, or in a private message, if you have more questions as you go, but your best bet is to have the Breast Center phone numbers for specific holiday weekend questions!! Not always easy to get medical personnel on a holiday!!
All the best as you have the implant and get started. Before you know it, you'll be done!! Please keep us posted and I'd be glad to answer any other questions. Extra gentle hugs!!! Ceanna
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Good Morning ladies. I had Savi placed yesterday (Tuesday) and won’t start the treatment until next Monday. This will give me almost two weeks with it in place. The position of it in my left breast is kind of an odd angle making the key part really press into my skin. This is making it sore already but hopefully will get better. I do go back in Thursday because there was a small area of fluid and they are re scanning to make sure that goes away. If not I’m scared they will take it out. I am a side sleeper and I tossed and turn a lot. I was never given any “do’s and don’ts” other than no heavy lifting or side to side motions. So my question is how easy is it to displace the device or have it move? I keep wanting to shift my arm because if the burning/stinging sensation at the incision.
Thanks for any advice.
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Denmother, although we are sorry for what you are here, we wanted to send you a warm welcome to the Breastcancer.org Community! We're sure you'll find it an incredibly supportive and helpful space. Until you get responses from other members here, you may want to read what we have in our main site on internal radiation.
We hope this helps, and we look forward to hearing more from you soon!
The Mods
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Denmother, sorry you have to join us, but you've come to the right place to feel supported. I had SAVI in place for 10 days-Wednesday to the following Friday (they remove right after the last rad). The first days are the worse, I thought, because the incision is fresh and you're getting used to having the device there. I did wear a breast binder the whole time I had the SAVI in place so that it felt secure and did not shift. The binder was soft and cozy but held the device and dressings in place nicely--I padded underneath where the device part that hangs out pressed against my skin--and that might help you too. I got mine thru my breast clinic but you could order thru Amazon or a medical supply--picture below. I don't know of many restrictions other than no showers while the device is in, but each person may have specific things recommended for their situation and they may have changed since I had it almost 5 years ago (Wow!! I can't believe I just said 5 years!! Time goes fast!). They do a scan everyday before the rads and that will show if the device is moving. I hope they showed you how to change the dressing over the days/weekend before your rads start. Are you on a preventative antibiotic? I was during the time the device was in. Ask lots of questions when you have your appointment Thursday and get a weekend contact number just in case you need it the weekend before treatment starts. We are here for you and ask any other questions you want!! Please let us know how you're doing! All the best. Ceanna
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