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Savi radiation treatment

Hi,

I just completed the 5 days of radiation treatments 2x per day within a 7 day period. The whole process was very painful and exhausting. The removal yesterday was very painful. Today I am exhausted and my breast is swollen and very sore. Is this normal?What is the time period before things start to get better?

Thanks for any information.


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Comments

  • 2ndGenBCA
    2ndGenBCA Member Posts: 28
    edited March 2016

    Hello Sweatpea5741, 

    I just finished my Savi radiation treatment yesterday and had the device removed, too. Yes, it did hurt when the device was removed, but I expressed my pain concerns to the doctor and he was very good at explaining every step and preparing me as best he could. He also let me count down to the final removal, which helped. The immediate pain from the removal got better almost right away, however, I took two of my pain meds from surgery before I went for treatment so I'm sure that helped a bit. Later in the day I did start to hurt again and I took a pain pill. I slept heavily last night - only awoke one time to go to the restroom. Today, I am also sore - but I have been through two surgeries before the placement and removal, so I have been living with pain in my right breast from one thing or another -- off and on -- for some time now.  

    Regarding the brachytherapy, I am finding that my food tastes like a the smell of an electric burn and I am battling a headache that is causing some nausea. I also feel some sporadic "burn" pain in my treated breast, but it does go away. I am trying to stay focused on how this cleaned the cavity from the dangerous cells rather than the pain and discomfort. 

    Overall, I am fortunate because I qualified for a clinical study that allowed me to keep the device placed for a three day treatment (entire placement encompassed 6 days) - the radiation levels I received during one treatment were about 750 rather than the 225 or so I believe the 2x day treatment delivers. While the device was uncomfortable, but not unbearable, I was limited in what I could do physically during the time it was placed in my breast.  I am thankful that I did not have to have whole breast radiation. 

    I hope you are feeling better today and that the pain continues to subside over time. Use your pain meds - that is what they are there for. If you don't have any, ask your surgeon to prescribe them. If you hurt, they are necessary. You will probably have to have someone pick them up for you at the doctor's office because they can't call in prescription narcotics due to federal law (just to remind you). 

    Wishing you a speedy recovery - just remember how fortunate we are to avoid treatments that could cause us even more discomfort. 


  • ceanna
    ceanna Member Posts: 3,120
    edited March 2016

    sweetpea and 2ndgen. The worst is over and now the healing can begin. I had SAVI radiation just over a year ago. While I did not have the exhaustion, swelling, or burnt taste you experienced, I did have some pain that I guess I expected, and therefore, didn't think much about. The pain was more from the additional wound from the device placement than the lumpectomy and it took me a couple of weeks before that extra wound closed. The pain will gradually go away and each person is different, so it's hard to predict how long yours will last. I still, occasionally, get a sharp or gentle little stab, but because I recently had my annual follow up exam and everything is great, I know there is nothing going on.

    I don't know if you have a follow up scheduled with your radiology staff, but if the swelling and pain continue, please be sure to check back in with them.

    I was just so grateful I did not have 6 weeks of external radiation so the SAVI short term problems outweighed the possibilities with long term external rads.

    Best wishes and let us know how you both are doing.

    Edited to add: I found that the pain was lessened by wearing a breast binder 24/7 for a couple of weeks. I am a D cup and it helped keep everything in place while healing.

  • Kaneli
    Kaneli Member Posts: 65
    edited March 2016

    Hi 2ndGen, Ceanna and Sweet Pea,

    I just had my SAVI put in this morning. My lumpectomy was 4 days ago. My pain was subsiding, but today, after the placement of the SAVI, I'm hurting again. My BS did give another script for pain meds and I am using them. I will start with the radiation on Monday morning, for 5 days. There aren't many of us out there so I am happy to read or learn anything that you all can offer on the SAVI. I know we are fortunate to qualify for this kind of treatment, but since there's not a lot of talk about it on this forum, it's hard to know if what you're feeling is normal. Anyway, keep me posted on your healing, and I will do the same! Cheers!

  • Sweetpea5741
    Sweetpea5741 Member Posts: 5
    edited March 2016

    Thank you 2ndGenBCA,Ceanna and Kaneli for your replies.

    I too had two lumpectomies prior to the catheter insertion, and I also feel as if my breast has been through very much. I also try to remain grateful, that my treatment was minimal compared to others.

    Kaneli I would say continue to take your pain medications. My surgeon told me I wouldn't need them, she said Tylenol would take care of the pain. Every one I was in treatment with advised me to take pain meds. Finally the RO could see the amount of pain I was in and prescribed meds. The treatments were definitely better tolerated. The techs also told me that the Savi is more painful for thinner, smaller women.

    3 days post removal I am healing, I rarely need anything for pain, but I am still fatigued and I get sore if I do too much.

    Kanei, rest and take care of yourself, I was grateful to be able to use the Savi method vs. 6 weeks of day to day radiation It is still radiation though and self care and pain meds are important

    Stay in touch

  • 2ndGenBCA
    2ndGenBCA Member Posts: 28
    edited March 2016

    Hello Kaneli, Sweetpea5741 and Ceanna, 

    Just wanted to offer positive thoughts and prayers to Kaneli as she begins Savi radiation. So far, I am glad I did it and I hope you feel the same way very soon.

    I don't get on the forum every day as I'm trying to keep things at a manageable pace during healing (Yes Ceanna!, thank you for that affirmation!) -- for me that means slowing down life a bit and realizing I don't have to cram so much into each day.  I'm glad you are feeling better Sweetpea5741 and that the meds helped you tolerate the radiation treatment better. I have moved to Tylenol only now - four days after the device removal because I made the personal decision that the rx was not as necessary at this point. While I do get some pain, I'm hoping the Radiation Oncologist will allow me to take ibuprofen when I go in to see her on Wednesday for my follow-up. Tylenol has never been my "pain reliever of choice" because it just doesn't work as well for me personally.  My biggest challenge right now is getting nighttime sleep. I can doze off in the day for a short period or need to just sit and rest a bit because I reach my activity level threshold earlier than typical (I'm taking some time off work), but a solid night's sleep is still elusive. I still can't shower due to the incision/placement wound not being fully healed, but I am hopeful that, too, will be possible soon - it's difficult to feel clean with "hand baths." 

    Taking it one day at a time; focusing on healing and being good to myself. :)  My next phase will include a five year course of medication. The medical oncologist has recommended Arimidex for me. I am doing some reading and I'm open to giving it a try vs Tamoxifen. 

    Wishing you all continued healing. :)

  • Kaneli
    Kaneli Member Posts: 65
    edited April 2016

    Hi Everybody! I am a 4 day survivor! :) I haven't posted for awhile, because my tumor type and choices have been a little different from most of the folks on this forum. At any rate, here goes. I had my lumpectomy 2 weeks ago today, (Mar 22). At that time, my BS put a spacer in the tumor cavity, in preparation for Brachytherapy. 3 days later, on Friday, after finding my margins were clear and my node was negative, (yay!) my BS put in a brachytherapy device: SAVI. The following Monday, last week, I began internal rads which lasted 5 days, 2x per day. I finished that treatment last Friday, April fools Day! They took the device out, and sent me on my merry way. As far as the experience, I felt it was a little rough, and there were days I felt it kicked my butt! My fatigue was overwhelming, but I realize that my emotional state could have played a part in that. Aside from that, I felt the device inside of my breast, and it did border between hurting , and just general pressure. I talked to others who were on the same timeline and treatment who were having an easier time than I was, I learned that the placement of my SAVI device was in an awkward position, which had to do with the location and whatever about my tumor, so maybe that's the reason I had a harder time. That being said, I am on the other side of it, and I got all the rads done in 5 days! I have no external burns and I am getting back into the groove of things. At this point, I just have a gauze bandage on the wound from the SAVI device, and I can stop that as soon as my minimal draining stops. My most troubling surgical effect is where they took out the sentinel node. It's still very tender and hurts quite a bit, at times....the surgery was only 2 weeks ago, so I realize that the node areas take a bit longer to heal. I have my first MO appointment this Friday. I don't know what he'll recommend, but it may be Hormone therapy. I have read different articles on the protocol of adjuvant treatment for my diagnosis and results, so we'll see. I know there are not many on this forum who have done the APBI (Brachytherapy) thing, but I thought I'd post it here. If anyone has the opportunity to do this type of rad, while I am not an expert, I would be happy to share my personal experience with you. All in all, even though it was not the easiest week, I would do it again, in a heartbeat. I feel fortunate that I was a candidate for this type of internal radiation, and if it is suggested to any of you reading this, feel free to email me, or ask me on this site. I will share this post on the Brachytherapy topic as well.

    Finally, to all of us, let's continue healing, stay strong and stay positive!

  • ceanna
    ceanna Member Posts: 3,120
    edited April 2016

    Kaneli, Sweatpea, and2ndGenBCA,

    Kaneli, glad to hear you're done with radiation and now recovering. You had a lot in a short timeline (my SAVI device didn't go in until 3 weeks after lumpectomy so I had a little time to recover in between). Hope Sweatpea and 2ndGen are doing well too. I remember that stage of having pain, some drainage, and pressure from the SN biopsy and the device placement, but truly, it does get better!!!

    I looked at it that within 5 treatment days, I was done with radiation with minimal side effects and no radiation burns. I didn't have to spend another 5-6 weeks in radiation and by the time I would have been done with regular radiation, I was already well on my way to my new "normal."

    Best wishes, all. Let us know how you're doing.

  • Tibbs11
    Tibbs11 Member Posts: 4
    edited April 2016

    Thanks for your post on this topic.

    This is my first time posting. I just had my SAVI device implanted on Thursday, and I start the rads on Monday, 2x a day, 5 days. My lumpectomy was Feb 26, but for several reasons, the radiation is just happening now, which everyone assures me is just fine.

    So far no issues with the device inside me, I can't feel it at all, and I'm feeling good generally, lots of energy. No swelling, no pain, no issues. Did the scan&plan session yesterday. Looking forward to having it all behind me!

  • ceanna
    ceanna Member Posts: 3,120
    edited May 2016

    Tibbs, best wishes for your next week. Just think, by next Friday, it will be done!!! Since it is the weekend, dressing the wound from the device placement will be on your agenda. I was surprised when a couple of the little blue wires fell out when I was changing the bandages!!! Don't be shocked--you can put them back in after you clean and dry them. And remember, next week you can take a shower again!!! Let the doctors and nurses in radiology treat you right. If you're not comfortable with the table or placement, speak up. I found them so sweet and willing to help me, but I had to speak up. I don't know if it's standard or not, but I was on an antibiotic while the device was in to avoid infection. It took a few weeks for the device wound to heal once they remove the device, but now, 15 months later, it's just a little reddish spot.

  • crazemaze
    crazemaze Member Posts: 4
    edited May 2016

    Hi everyone...I start my SAVI treatment May 16 and will have the insert May 12. Have any of your doctors offered slight anesthesia ( laughing gas) when they insert and take out? Curious if this is an option? I'm getting anxious thinking of the pain. Had my lumpectomy and SNB and still really sore from the SNB ( but grateful my nodes are benign and margins are clear). Also can you at least take a bath with the device if u don't get it wet? Thanks for the helpful info!!!

  • ceanna
    ceanna Member Posts: 3,120
    edited May 2016

    crazemaze, the doctors had numbed the area of insertion so it didn't really hurt. When the device is in (basically 10 days) I had a pressure feeling and only slight pain occasionally. Yes, I too, had more pain for the SNB and swelling from that than the lumpectomy or SAVI device. You are not to take a shower and get area wet since the wound is open and you can't risk infection, but I have to admit I did cheat and wrapped myself in a large towel on the top and used a handheld shower for my bottom half a couple of times,but really felt ok with using washcloths/soap a couple of times a day and I had also bought the big pre-moistened wipes meant for bathing someone bedridden!!! I could also wash my hair with the handheld by bending over the tub as long as I covered the device area and wore a breast binder to keep everything in place while I bent over. I was also prescribed an antibiotic to take while the device was in to prevent infection. I bought two breast binders and wore one of them each day of the radiation. I could wear under a fleece jacket (I had my treatment during winter months) and since the radiation rooms are cooler, I used to leave the fleece jacket and binder on and just open the front of each during the CTs and treatment and at least keep my arms warmer!! Best wishes and let us know if you have other questions and keep us up to date on your progress.

  • crazemaze
    crazemaze Member Posts: 4
    edited May 2016

    Ceanna, Thank you so much for the super helpful information and you time. You have provided some great suggestions. I will keep you updated on my progress. All my best!!!

  • Kiki13
    Kiki13 Member Posts: 245
    edited May 2016

    Hi there crazemaze and everyone,

    I haven't been on the boards in awhile, but decided to check in and see what's new, and this post caught my attention. I did APBI using SAVI a year and a half ago now, and I am so glad I made that decision. I know there aren't many of us on the boards who went that route, so I'm happy to answer any questions you might have. I had the device in for 10 days, start to finish, and I was uncomfortable, but not really in pain, I had local anesthesia when my surgeon placed the device, and the nurses who removed it on my last day of treatment did a great job and minimized the pain. I had an excellent medical team throughout the process...can't say enough good about them. I asked lots of questions and told them if I was nervous about something. So don't be hesitant to share your concerns with them.

    Also, my hairdresser very kindly offered to wash my hair for me at no charge at his shop - this saved me from trying to go about it on my own. You may be able to find a salon where they will do this for you. I managed a few very shallow baths (keeping my sports bra and all the bandaging in place, and NOT getting wet above my waist), but mostly washed at the sink.

    Best wishes to you all! I've had a good outcome so far and hope the same for you too.


  • crazemaze
    crazemaze Member Posts: 4
    edited May 2016

    Kiki13-thanks for the suggestion of the hairdresser to wash your hair!! Never thought of that but my salon is literally under my condo..so I am definitely going to do this! Unfortunately my BS does not offer anesthesia before the insert ( I called) so will just take a pain pill and pray for the best. I'm sure it will be fine....and will keep thinking how grateful I am to be a candidate for the SAVI treatment and live in a city where this is an option. All My Best

  • ceanna
    ceanna Member Posts: 3,120
    edited May 2016

    crazemaze, I would suggest you not self-medicate before the procedure. I've read somewhere on these boards that doctors won't do a procedure if they find out you've taken a medication without approval or if it could interact with what they want to give you. You may want to call the BS office and see what they suggest and if they will numb the area instead. I can't imagine they would do it without numbing which is very different from general anesthesia.

  • Kiki13
    Kiki13 Member Posts: 245
    edited May 2016

    Hi crazemaze - I agree with ceanna. I was told ahead of time that there were certain over-the-counter meds that I was not to take before my procedure. As far as the placement of the SAVI goes, I was fine with just the local numbing that they did. Ceanna mentioned that general vs. local (numbing) anesthesia are very different - I only had numbing.

    As with most medical procedures for me, the anticipation was worse than the actual event! I do believe knowledge is power, so ask them as many questions as you need to feel comfortable. I agree with you about feeling grateful that I could do the SAVI treatment - it was the right decision for me. Best of luck! I hope you'll let us know how it goes.

  • MaryJ97496
    MaryJ97496 Member Posts: 3
    edited May 2016

    Did you get lumps in your breast after the procedure?

  • MaryJ97496
    MaryJ97496 Member Posts: 3
    edited May 2016

    How are you doing now? I had my surgery in February and SAVI treatment in March. my breast is still very sore and lumpy. One doctor told be in was fluid retention and another said it was calcium. Have you had this problem, or heard from someone who has?

  • crazemaze
    crazemaze Member Posts: 4
    edited May 2016

    HI, I had my SAVI device inserted this am and was very nervous before my procedure! I have to say it was way better than expected. I felt some pain about a level 4/10 I would say. It does feel uncomfortable and heavy but besides that I have to say I am surprised how easy it was. My MRI biopsy was way more painful. I start radiation Monday and excited to be close to the finish line. Goodluck to all who are having this procedure... So far so good for me! All my best! crazemaze

  • Kiki13
    Kiki13 Member Posts: 245
    edited May 2016

    Hi MaryJ - I finished my SAVI treatment almost a year and a half ago, and I really don't have any lumpiness now except for underneath my incision. I remember feeling a little sore and "lumpy" for a few months, but felt mostly OK by the time of my first six-month appointment. The "hollow" that is left from the lumpectomy and where the SAVI was placed is probably still healing, since it's only been a couple months for you - I am not an expert, so you may want to look for articles on this website or ask your doctor. I feel great now and am having no problems, so no complaints.

    Hi crazemaze - so glad to hear it wasn't as bad as you were expecting! Yes, it's uncomfortable and you have to be careful about lifting or anything bumping the area, but it'll be manageable. I tried to do too much by myself the first day or two, then I gave in and let my friends cook for me and drive me places! Best of luck with the start of your radiation Monday.


  • ceanna
    ceanna Member Posts: 3,120
    edited May 2016

    Crazemaze, best wishes as you go through next week. I'm glad it was easier than you anticipated!! Just think, next Friday it will be done!!! If you have any questions, don't hesitate to ask the radiation oncology nurses or post them here. I think my toughest time was over the first weekend when I had to clean and dress the wound myself. Next week, the nurses should do it for you after each twice a day treatment.

  • Sweetpea5741
    Sweetpea5741 Member Posts: 5
    edited May 2016

    Hi Everyone,

    I haven't been on this board in quite some time. It's amazing to me how others have had different experiences with this procedure. Overall though, it was a good option and I am glad it is over. I am about 2 months post radiation and I am just now starting to feel better. I did go to a naturapathic doctor who is helping me recover. A week or so after my treatment, I broke out in a terrible rash across my chest. My BS said it was a yeast infection which is very common after radiation. It is also very common after your immune system is compromised and that is one of the side effects of radiation as well. Even though the procedure is less invasive, it does not mean that we haven't been exposed to inordinate amounts of radiation not only from the treatments, but I also had to have a CT scan before each treatment. A total of 11 CT scans that includes the initial CT scan for placement. Prior to this treatment, I also went through MRI, and the mammograms. It is really important to build up the immune system post treatment.

    Since my treatment, I have had difficulty with pain in my left arm, limited mobility and tremors. My BS states it is a mild form of lymphedema. I did not have any lymph nodes removed, so I find this hard to understand. The lymph nodes do play an important role in our immune system as well so it does make sense.

    I've decided to decline the tamoxifen treatment. I am tired of side effects and want to get back to my normal active self. I miss working in the yard and being able to hold my grandbabies. Even simple things like cutting a potato can be painful. I power through, because that is my nature, but it is annoying.

    My treated breast is still tender, It is hard to tell how it will heal because it still feels swollen and lumpy. I can finally sleep without a bra, and I am going to go shopping for new bras that are wireless. I've started a good naturopathic regiment that includes essential oils, and I'm using castor oil warm packs to treat my arm pain, and I am beginning to feel better and relief.

    I support all of you during your journey, and I wish you all the best. I would encourage anyone starting the treatment to take care of your self. Get plenty of rest and manage the pain. I did too much in the beginning. I had a son home from college that I cooked for and another son that I prepared a special dinner and his favorite cake for his birthday. I didn't want my family to see me struggling so I tried to keep things as normal as possible. It's not though when you are going through something this abnormal. Rest, drink lots of fluids, and let others help you.

    Bless all of you for your courage.

  • Sydneyluv
    Sydneyluv Member Posts: 3
    edited May 2016

    Sweet pea, glad to hear your Savi procedure went well. I too had Savi radiation almost 3 years ago. It was essentially pretty easy and I worked throughout. I was left with a significant dimpled scar, where I had none from the lumpectomy. I was exhausted for a few days following the procedure which was to be expected with radiation in any form. I occasionally check in here to see what's new and almost always log in to comment on the Savi procedure as it was such a positive experience for me.

  • MaryJ97496
    MaryJ97496 Member Posts: 3
    edited May 2016

    Did you have lumps in your breast for a while? Did your nipple turn from pink to brown? How long was your breast sore?

  • Sweetpea5741
    Sweetpea5741 Member Posts: 5
    edited May 2016

    The color of my entire breast has changed as well as my nipple. Everything is darker. My breast is still tender, I want to start working out again, but it is too much and hurts if I try to run or even walk fast. Sydneyluv, I'm amazed that you could work during treatment. Everyone I was in treatment with ( 7 of us) were not only unable to work, but most of them were on pain meds during the treatments. Everyone is different, but it was supportive to me that others were having similar reactions. Time heals both physical and emotional woulds. I remember my Radiation oncologist saying, " a year from now this will be a distant memory". I look forward to that!!


  • Zola99
    Zola99 Member Posts: 1
    edited June 2016

    Dear all, I'm a newbie here, but I wanted to weigh in as a survivor who had SAVI radiation treatments (5 total, 2x per day) in October 2015. I am very small breasted -- barely a B cup, and my lumpectomy and re-excision left my affected breast very VERY small. I've been wearing a homemade prosthesis, but when I had my first post-rad mamo, I experienced pain and inconvenience (the whole thing took twice as long as usual because the breast is just so small). I'm considering reconstruction now. Have any of you thought of reconstruction or had it? Do you have any tips?

    Thank you all for sharing your experiences. I, too, couldn't work during my treatment because I was too exhausted! I was having pain, but I think it's just because of my small breast size (and, I'm thin, too). Luckily, however, I have minimal lumpiness and no discoloration. Sweetpea, I'm feeling more and more like my treatment is a distant memory, so hang in there!

  • moderators
    moderators Posts: 7,682
    edited June 2016

    Hi Zola! Welcome, and thank you for sharing your experiences with radiation here too. We hope you're also finding support and information. If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here!

    Best wishes,

    The Mods

  • meow13
    meow13 Member Posts: 1,363
    edited June 2016

    bumping for a friend

  • meow13
    meow13 Member Posts: 1,363
    edited June 2016

    bump again for tiger lilly

  • 61yearsyoung
    61yearsyoung Member Posts: 1
    edited July 2016

    I had my SAVI inserted in on May 31. what was really important to me for comfort was having some good comfortable bras to cover it all. I am a plus size, and they weren't easy to find - try Hanes, My size, (on line) for a really good front closing no-wire bra. They aren't expensive ($17) so a I bought a few so I could swap them in and out. they were a Godsend.

    I had my SAVI port removed about a month ago. My RO said removal shouldn't be bad, but I should take some pain medicine before I came in. I thought that was conflicting advice, and when they tried to take it out there was a LOT of pain. I called a halt and asked that the lidocaine be used (which was used when it went in). It was a breeze after that.

    I wish I had seen this discussion chain before I went in - I read the SAVI Sisters website and it sounded like a piece of cake. I would have liked to be better prepared.

    But the good news - once you are healed, there are therapists in light-touch lymphedema breast massage who can help return the breast to a much better state - they can break down tissue that will be scar tissue if nothing is done, and can help remove lymph fluid from the breast. I've had one treatment and it has been a big help. A friend of mine used the service a year ago and has virtually no scare tissue. My therapist was a referral from my breast surgeon and my hospital's Holistic Center.

    Thanks for writing everyone - it was so good to have some of my issues validated.