Savi radiation treatment
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I had the Savi treatment done in Feb. Breast still very dis colored but no pain.
What I am experiencing is droplets of liquid coming out of the nipple.
Have anyone else had that?
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I have experienced both the traditional breast radiation treatment 17 years ago and the new SAVI treatment recently. I chose SAVI this time because of the shorter duration and the targeted ability of this method. I have read some feedback suggesting the SAVI was not a big deal. I beg to differ. Any time you have a foreign object placed inside your body, it is a big deal. The treatment may be for 5 days, but I wore the appliance for 9 days. One day for placement, second day for configuration of it, living with it over the weekend where nothing is done and then the 5 days of actual radiation 2 times a day. The appliance is placed in the cavity created where the tumor is removed. Fluid goes to that area and I leaked this fluid for the entire 9 days plus a little after removal. I found the SAVI experience to be uncomfortable and at times painful. I went on a regimen of ibuprofen and the prescribed antibiotics (which ended up giving me a yeast infection). Now that it is over I can't say I am sorry to have done it, but it is a call. The old time radiation is now usually done for 3 weeks as opposed to the 6 weeks I experienced in the past. I experienced skin burn then and now (more in the past). I also experienced an accident where the table I was laying on while connected to the source was moved; quite painful and deeply distressing. Hopefully accidents of this nature are not common. I had a lot of support from friends and I am retired so did not have to deal with going to work. Removal of the SAVI was painful when the unit was being contracted in the breast not the actual removal through the entry wound which was well lathered with lidocaine cream. (Imagine pliers with the screw on the end combined with the head of an egg whisk). It may have been an issue for me because the SAVI was nearer to the skin. I am not yet fully recovered so I can't speak to any long term issues but I am hopeful that I will heal quickly and well. I should add that I experienced times of strange fatigue in the afternoons towards the end of the treatment and continuing now after the treatment.
I don't consider myself a Breast Cancer Survivor but a Breast Cancer Treatment Survivor. Whatever method you choose or how you proceed, I think the more information you have to make the decision the better. Good luck!
Follow up some 6 weeks later. The radiation burn I experienced was across the side of my breast not localized at the targeted spot which was on top of the breast. Also I no longer seem to have any hair growing under that armpit. I experienced this lack of armpit hair growth from the original radiation treatment I had some years ago on the other breast. At that time the beam crossed my armpit and hair above the beam still grows, below not. I shared this info with my radiation doctor and he had no answers for me. But it suggests that the radiation is not as localized as advertised. Also I was sent bills for the use of parts during radiation. The only part involved that I can think of was the SAVI appliance. I had been told that insurance would cover it all as radiation treatment. Evidently BC/BS broke out the billing into various sections. My insurance does cover "parts" so the bills have been resubmitted. But if someone does not have this type of coverage, they may get an unwelcome surprise. And lastly I shared all of this info with the SAVI website. I submitted it twice in case of any uploading error. They chose not to publish my story. As they have no direct competition, I wonder at their obvious attempt to show only glowing reports instead of a full unbiased account. If I had it to do over again, I'm not sure I would pick the SAVI method. It's a call.
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space barb, thanks for your experience. If I have a recurrence and needed a lumpectomy I would like savi to avoid skin damage. I had a simple left mastectomy and DIEP. I must say I experienced little physical pain, mostly emotional pain. My DIEP was more to recover from but I was glad to be whole again.
I guess I was lucky to not be that uncomfortable. But I agree we certainly need better treatments.
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If all goes as planned and the pathology comes out ok, tomorrow I get the Savi device placed. Today my armpit hut and the balloon spacer hurt some but I was only taking tylenol. I think Im gonna need to take my stronger pain medication to get through the next 10 days.
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Katszr, all the best to you as you undergo treatment. I am almost 2 years out from SAVI radiation. I experienced discomfort but little pain unless I bumped something (if you have kids or grandkids, watch out for hugs!!). Everyone's pain tolerance is different, but make sure you check with the RO before you take pain meds on your own. I wore a tight breast binder 24/7 for the whole 9 days the device was in and felt that really helped. I was placed on antibiotics and did not develop any issues. The worst part was not being able to shower (you cannot get the open wound wet) but I had bought the big wipes for bedridden patients and used those, and with extreme care used a hand-held shower on my lower half a couple of times. A friend helped me wash my hair in the sink, but I've heard of others who went to a salon for hair care. Self care is the most difficult over the weekend, but make sure the nurses show you what to do. They will take care of redressing the wound the twice a day you have treatment. I drove myself the 90 minute roundtrip and just had lunch and read at the site during the time between the twice daily rads. Most people would never have known since my treatment was also in winter and I was bundled up anyway. I wore the binder under a fleece jacket and was allowed to leave the unzipped jacket on during the CTs and during treatment since the room was chilly. Ask lots of questions of the nurses. They were very helpful to me. Best wishes.
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Katszr, indeed, we too wish you all the best with this, and please keep us posted. Ceanna brought up great points! Please do keep us posted!
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Pathology came back :stage1a no lymph node involvement and clear margins!😀😀. The device was placed and is a little uncomfortable but not unbearable . I hope it feels better not worse as time passes. She used the size 10 full open. I can see the shape of it and that gives me the willies. Lol. Still ....9 more days to go cuz of the holiday break. Even if it hurts.... way better then weeks of full breast radiation. Wish me luck!!
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how are you now? I just got mine today. No loving it, lol but hope time goes fast
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Katszr, I'm glad you had a great path report. When do you start the actual radiation--tomorrow? I think I remember having 2 days between device placement and the beginning of rads while they do the calculations.
Yes, uncomfortable and you'll be glad to get it out after treatment, but I did not have worsening pain when the device was in. Just be sure to follow all the nurses suggestions for cleaning the area over the weekend and watch that you don't bump into something! Again, I wore a breast binder (I had two so I could always have clean one) and wore it to keep the breast and device from moving. Sorry you have an additional day because of Christmas, but glad you'll be free of it by New Year's! Yes, saves week's worth of rads! I felt the inconvenience of not showering and the discomfort, and lack of burns, was worth it.
I did not let the device slow me down and did most everything while it was in--following doctor's orders of course! In between the twice a day CTs and rads, I went out to lunch, read, and even went to meetings and shopping. It's probably about 6 hours between each twice daily rads so unless you live or work close to the hospital, you can do what you feel up to in between. It's only five days of rads and before you know it, you'll be done!!
Personally I am doing very well 2 years out. After the device was removed, it took a few weeks for the wound to close--they don't stitch it shut--but a little gauze in my bra protected it and I could shower without worry. I did have to take antibiotics while the device was in--I don't know if that's standard treatment--did they prescribe for you? I have a tiny red scar where the device was placed and other than some little stabs of pain as it was healing and the oddest of vibration feeling for a brief period in the wound while healing, I did well.
Let us know how you're doing and if you have any questions. All the best!!
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Tomorrow is the Simulation. Then treatment starts on the 22nd. Did you sleep in a recliner? That is where I am most comfortable. Gravity seems to hurt. Walking around with it makes it sore. Even my arm pit gets sore. I will be glad to be done. How did the actual radiation treatments feel? I hope to not have to mess with it over the break. I have not had fluid issues. I dont want to see it! Lol. I can feel it from the top of my skin though. Mine is a 12 o'clock 2 cm from nipple. The hole is towards my armpit. Did you need hormone therapy after?
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katszr, sleep anywhere you will sleep best! I was able to sleep in bed, but enjoyed my recliner too. I'm a DD cup and gravity was also an issue, but I found that wearing the breast binder 24/7 helped me. It kept everything in place--breast and the device. Nothing moved when I moved! My breast center gave me one and I bought another to be able to wash one, wear one. I was able to wear it under a fleece jacket instead of trying a bra and even wore it for a couple more weeks after the rads were finished to decrease movement until healed. This is the type I used http://www.eabmedical.com/product/breast-binder/ It was soft and cozy and has Velcro front closings and covers all around including the armpits!
There is no pain from the radiation itself. They will connect the tubes in the device--the parts that hang out of the device, to the delivery tubes and I could feel a little pressure from the added weight of those, but no pain. Just be sure to ask the nurses to make you comfortable BEFORE the treatment starts since you must not move during. I asked for extra pillows and pads to position my arms and kept my fleece jacket on (although unzipped) since the room was cool. Once you are connected, everyone else will leave the room during the radiation. My center had a picture on the ceiling so it gives you something to look at during the short time of the procedure. Otherwise, just think good thoughts and ignore the noises. There will be little clicks and some noise, but over in several minutes. The Savi device I had had 7 tubes and I just counted down as I heard each tube click and empty. I was kind of fascinated by the process!
My device was also placed facing my armpit. I had had a seroma (large, fluid filled) over the location of the sentinel node biopsy when the device was inserted, but the radiation actually helped the seroma heal!!
Sorry, but you will probably have to look! You will need to clean the wound with the device in over the weekend unless you have someone's help. Make sure they show you what to do. I first panicked then laughed after I called the nurse and she wasn't worried at all when a couple of the purple plugs fell out while I was cleaning the area and changing bandages. Another reason I wore the binder all the time!
I chose not to take tamoxifen due to other health issues, so you might want to start reading in the tamoxifen or AI threads. Lots of mixed stories there. See what your doctor recommends.
Best wishes on the simulation and the beginning of treatment. Keep us updated.
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The simulation went well and I am cleared for tomorrow. They enlarged the device a little bit more to it's max open. I can feel the stretching pain but it's not too bad. Mine goes in from the armpit area towards my chin I guess. So that area is just 12 o'clock and two centimeters above my nipple. The doctor was afraid since I didn't have much drainage on the Band-Aids that I would need him to drain it with a needle but I did not have any fluid buildup. They told me that I did not have to change any thing over the days I would be away unless it had fluid on it. I can have my mom help me if I need to though because she will be around. As far as pillows go they made me something they call a cradle that was formed in the position that they want me to be in and is now where my body will go back in during the radiation. Kind of like a padded mold. I also find it all fascinating and have done a lot of research on it. It's not fun but it's definitely much better than the alternative. I think that the binder would bother my armpits. They're so sore as is. What they have me wear a sports bra with zippers in the front. They also gave me after surgery a surgery bra. I didn't like it as much as my Danskin's sports bras. I had a friend come over today and she help you wrap every single Christmas present I bought for my family and friends! It took about three hours and during that time I'll she would let me do is write the tags. So despite all of this I am still enjoying my Christmas holiday in fact maybe more than any other year, because everyone has been so kind to me. So by the 29th I will be done all of this and back to normal life, well other than constantly getting checked and making sure things haven't come back. Thank you Ceanna for all the help you have given me. It really helped to talk to you since the Savi sister site
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Hello all,
I am glad that this thread has been helpful to those who are undergoing the SAVI treatment. I too tried to add my comments to the SAVI sight and it was not published. They do not want you to think that it is an involved and for some, painful process. I am nine months away from my treatment and today I am feeling grateful for my health. I still have minimal soreness and feel very lumpy. I did feel a sizable lump under my arm on the same side of the treatment. My breast surgeon said it is inflammation from the treatment and that it can take up to a year to fully heal. She did recommend massage therapy for the lumps, and showed me how to do it.
I think it is important to recognize that this treatment is not a piece of cake and I continue to encourage those in treatment to care for themselves, rest, stay in contact with your physician, take pain meds if necessary. After the treatment I recommend that you do whatever you need to do to build up your immunity as it is greatly diminished from the radiation and this is what causes the fatigue and reactions.
I did a clean eating detox, take natural supplements and acupuncture greatly helped the pain and mobility issues I had.
Thank you all for your responses.
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3 down 7 to go! After this afternoon , I will have a 3 day break for the holiday. All is going well. The device doesn't feel comfortable, but it isn't too bad. Worth it! I even drove myself in today! I am ok on just tylenol now. I will be glad when it is removed and I can just heal back up though. Tired of being careful of it and making sure it doesn't get bumped. It all kinda rubs stuff that is already sore. It feels good when the dressings are changed. They gave me stuff to change it over the break. Where mine is located I will need help but my mom used to be a nurse so she can help me out. So far I have not been "draining" much at all and no pocket of fluid that needs to be delt with. If one more person says " God only gives things to the ones that can handle it" I might punch someone though! LMAO! Seriously!?? Like God looked down at me and said wow, she's strong lets give her cancer! I guess they mean well...but still!
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katszr, glad all is going as well as it can. Just think, this time next week you'll have had the device removed, a full shower, and free of the irritation of the device. Sorry some comments are inappropriate. They mean well. I'm glad I told very few people and with the short term of rads delivered via SAVI and no chemo, most people were totally unaware of my situation, hence no comments like that!
Best wishes for the Christmas/Hanukkah break and gentle (((hugs))).
Sweetpea, sorry you're dealing with lumpiness. Hope the massage helps. Yes, it takes time to heal. I think the doctors always use the one year timeline, but each person heals at different rates!! It will never be the same but as time goes by, I seem to notice less and less. Sounds like you're taking good care of yourself. Keep it up and best wishes for the coming new year!
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Katszr, how is it going? I hope you had a good Christmas, despite the uncomfortable device!! Are you almost done with rads?
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Tomorrow is my last day!!
I had a wonderful Christmas . Would have preferred to not have the 26 th off cuz I'd be done today. Did you feel the radiation on the last few treatments? I did some and had a nerve that "screams" out every now and then. Doc confirmed it could be a nerve affected. Still not unbearable. Today after the CT they had to deal with an "air pocket " but it didn't hurt too much. I found out though yesterday that one of my Aunts was BRCA2 positive so now I need gene testing. If I am positive I will have them remove my ovaries. Already had the other stuff out during a partial hysterectomy. Bummer, huh? It is kinda a game changer. 0 -
katszr, wondering how you turned out??? I hope that screaming nerve calmed down once the device was removed. Sorry about the need for gene testing and wish you all the best in results.
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I am doing great now!
Healing well and only slightly tender. Yes...the gene testing is looming over my head like a very dark cloud and hard to feel good till I know one way or the other on that. I really lost it after todays appointment. The PA for the surgeon is also the same person that was the one to tell me the "first" bad news after the biopsy. She is not "mean" but not diplomatic or empathetic at all in how she delivers information. When I told her that I might be BRCA2 and that I know it is a "game changer" I asked her what they feel about it and she looked me straight in the eye and said. "We recommend double mastectomy and removal of your ovaries". Said in the same way as "we recommend you wear a coat when it is cold outside". I just stared at hera minute...then imagined how good it would feel to punch her in the face...(I did not of course) and then told her, well... I will wait to talk to the genetic counselors and that I hope just keeping an eye on my breasts and the ovaries out would be enough. I truly pictured punching her. I think it was the "fright or flight" instinct. 0 -
katszr, I hope you don't have to wait too long for the gene test results. Waiting and wondering are the worst! Glad you are recovering well from rads. I'm sure you enjoyed the first real shower after the device was removed!! Sorry you encountered such a non-feeling medical practitioner and real sure you felt like punching!! Perhaps a punching bag or pillow will have to do!!!! Let us know how you're doing and if you want, PM me, if you have other questions or want to talk.
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I finished Savi radiation about a month ago. The actual treatment was not too bad. Had trouble sleeping from the discomfort of the device. I don't have much pain and I've limited my activity. My issue is that wound will not heal. I am on my second antibiotic and also did a pill for yeast infection. If this second round of antibiotics doesn't work I may have to see a wound specialist or have another surgery. Has anyone experienced a similar situation. Are there any helpful suggestions?
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Hi Trucker, we're sorry you have to be here for this reason, but wanted to say welcome!
Hope you get answers from other members soon. Let us know if can be of any help navigating the forums or the main site.
Best wishes,
The Mods
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Tucker, I'm sorry you find yourself here. I had SAVI over 2 years ago and was a slow healer also. You don't say whether or not the open wound is infected or just open but perhaps with the antibiotics you mean it is infected. Being on long term antibiotics will often lead to a yeast infection. I always eat plain yogurt when I'm on antibiotics and it's never too late to start yogurt (get no sugar, unsweetened type with active probiotics).
My wound took about a month to fully close (and longer to heal) although it was not infected (I had been on antibiotics while the device was in). I feel part of my problem was the large size of my breasts. I learned the difficult way that I needed to wear a cozy breast binder most of the time while it was healing to hold everything in place as much as I could. I still have a slight scar but having scars a long time is normal for me. I suppose a lot has to do with where the wound is and if I moved too much. My wound was almost half way down the right breast on the arm side and with moving my arm, I could feel if I moved too much. Despite that problem, I was very glad I did SAVI.
I did up my intake of Vit. D (5000 IU) and Vit, C (5000 mg) daily when I was not healing and it seemed to help within days. You might want to have your doctor check your Vit. D level.
Please feel free to ask any other questions. All the best for the healing process!
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Thank you for your reply. Yes my wound is still open. It has been 5 weeks since the Savi device was taken out. I am on my second round of antibiotics. The infection seems to be better. I will see my doctor on thursday. Thank you for the tips about vitamins and yogurt. I will definetely try these. Thanks for sharing your experience.
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Tucker, hope that the healing is far enough along that at your doctor app't Thursday, you will be off antibiotics and on the road to complete healing. All the best!
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hello SAVI folks! I did post on other forum, but think I should post here, also.
I had lumpectomy on 07/26 and will have SAVI installed on 08/22. Simulation scheduled for 08/24 and I suppose actual treatment will start 08/28. So, I will have the device in for about 10 days total. I, too, am still swollen and sore from SNB. I am anxious about going through all this, but the RO said it is the best option for me and he would not recommend full breast radiation for me anyway. I did have clear margins after surgery and no sentinel node involvement, but my DCIS was high grade, so radiation is best option to prevent recurrence.
So, I will go through it and I am really glad that I can turn to experienced folk to let me know what to expect as I go through this. Thanks to all of you for your posts.
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Irishgirl, I had posted on the other brachytherapy thread to you also, and want to wish you all the best now that you have a schedule for SAVI. My device was put in about 25-30 days after LX. I didn't have much swelling, but had a seroma from the SNB and my radiologist thought it was okay to go ahead. The seroma actually got better with the rads! Go figure! Not the norm, I guess.
I, too, had the device in for 10 days. From my experience, please ask your nurse how to care for the open wound before you experience that first weekend after insertion and before rads start. If your experience is like mine, the nurse did the cleaning and dressing of the device area on the simulation day, but then you have the weekend on your own. Also, I was on antibiotics preventively from the day of insertion for 10 days until the device was removed. I did not get any infection and the wound healed naturally from the inside out (although I am a slow healer so it took a few weeks to totally close--not typical healing time of others).
Again, if your experience is like mine, you will not be able to take a full shower during the time the device is in. Prepare by buying some bath wipes (meant for bedbound or baby wipes) or having access to a handheld shower (I used on lower half while carefully not getting upper, still covered, half wet). I was able to wash my hair in sink, but others have said they had their hair washed at a salon.
I did not limit most of my activities during rads. I drove myself roundtrip 1 1/2 hours, walked, shopped (limited how much I lifted), and went out as much as normally. I might have slept a little more, but other than avoiding direct hugs, and little kids on my lap, I did okay.
All the best and let us know how you're doing. Ask here if you have questions or send me a private message.
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Ceanne,
Thanks so much for the tips. Your posts have eased my fears somewhat. My BS will install the device under local numbing. I don't know where she will put it, but my lumpectomy scar is at the 6:00 position. The SNB scar is about 2 inches below my armpit (and has been the worst, healing wise, due to the bra coming up to that exact spot and the swelling).
As someone else has suggested, I bought a couple of front fastening bras and they are more comfortable than the support bras I had previously bought.
I am counting down the days with anticipation. However, were it not for this community, I would have had no clue what to expect, so at least I feel better informed and know what to expect.
Thanks again for being here and helping me and anyone else getting SAVI.
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Hey Irishgirl! Ceanne was a big comfort to me as well when I did SAVI radiation several months back. I wanted to toss my experiences here on this thread as well, maybe to help ease peoples stress a little.
I found the SAVI treatment process to be a real breeze - so it can happen that way. Obviously not everyone reacts the same way, so I count my blessings that everything went as great as it did.
Mine was inserted Monday morning - I drove over, did sim, then did the first treatment that day. Two each day, then on Friday after the last treatment they pulled it out. The one part I really disliked was when it shifted and there were air bubbles and they had to manipulate my breast to try to get things in place again. I actually told my poor RO that I didn't like her any more. LOL.
Note - I had a small tumor, and thus a small cavity, and thus got to have the "mini" SAVI. This undoubtedly played into the entire experience going so well. I also have a notoriously high pain tolerance - but, I wasn't tolerating pain there just wasn't any. I too was on antibiotics for the entire course of treatment, and was asked not to shower. I washed my hair in a sink - they told me that might be why I got air bubbles twice (that's lots of moving around...)
From reading other peoples experiences - I think another factor in my treatment going so well was that the nurses used no tape for the entire week. My nurse told me that the tape really irritates patients skin going on and off so much; so he would just pack the gauze on and then I had a LOVELY mesh tube bra that held it on there. So it was gauze - mesh bra - front closing sports bra - clothing.
Probably wierd, but I asked to keep my savi. It's in a bag.
On the other thread that you posted in I did a daily blog style entry for what happened each day. Perhaps that will help you?
I will send great thoughts your way that everything will go smoothly and routine in your SAVI treatment
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Hi, Pyrrh,
I did see your day to day blog and it really helped me to understand what to expect. I would have wished that I start therapy the same day as the insertion, but I guess my team doesn't do it that way. I also hope that I don't have tape all over me, as I would like to forego the irritation that the adhesive causes, but will wait and see what happens. The RO already told me that there will be no showers, so I expect that I will have to do sponge baths and sink hair washing, too.
My tumor was small, but they took out a large area to be sure they got clean edges, so I don't know if I will be lucky andhave the mini. I am large breasted, too, so maybe they go by that. Whatever size, it will be all over soon, and I have to say that I am glad that I am a candidate for it, because I am very fair, freckle easily, and sunburn badly, so I think full breast radiation would do a number on me.
Thanks for your posts. They really help me understand the process and help allay my fears. I will post, too, as things occur. I hope I don't get any air bubbles! Manipulating the breast must HURT!
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