Savi radiation treatment
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- Tampa59,
Glad you are back and on the path to do this again. Hoping no snags or problems this time, but you are more educated and experienced this time around. I hope all goes well this time and your treatment will progress smoothly. You are right, this was the only place where I found support, education and encouragement. Even the “SAVI Sisters" site was outdated. I found almost instant, up to date information and support on this site.
We are here for you as you go through this. Be strong. You will get through this. Hope all goes well on Wednesday. Your team will guide you through this.
Gld2b,
Hope you are feeling better. The next few weeks probably will bring twinges of pain and swelling. Remember that you have been through trauma and it takes time for the body to adjust. Before long, this will be a distant memory for both of you. Best of luck. Sending hugs your way.
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Tampa, welcome back and glad to hear you have healed well and have the option to try again--as much as none of us really want to go thru this!! I pray all will go well this time--I'm sure the surgeon will be extra careful this round!! Yes, by the end of the week, you'll know if it's a go, and by the end of two weeks, you'll be done!! Keep us informed and ask any questions that might come up. You're in our thoughts.
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Tampa59 - I'm so glad you checked in again. Fingers crossed that everything goes smoothly. Definitely ask if you need any advice or commiseration during your SAVI week. We're here to help. It'll be over before you know it and then you move on to whatever is next.
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Update: I made it through staging and 2 rounds Friday of radiation treatments. WOW! That's all I can say!
Before the surgeon attempted to insert the device Wednesday she went full disclosure that if she couldn't find everything she wanted to see on the ultrasound she wouldn't proceed. She also said she talked with the radiologist at length the day before trying to make the determination to move forward...my heart sank a little but as she worked through it (and had another nurse who seemed to be very familiar with the Savi in the room) they said they "found it" and it looked "beautiful" and it was a go. The only additional curve ball she threw in was while she was inserting it she says "a calcification showed up on your lung that I want to have checked out in 3 months on the x ray" ugh.....I started asking a million questions as similarly when we went through the diagnosis in April she mentioned I had to have a liver MRI because something had showed up there. Turned out to be nothing but ugh....it never seems to end.
The radiologist called me about an hour after I got home on Wednesday and asked if I wanted to come in at 8:30 am the next day for staging and I was like "heck yes" so that was about 2 hours but what they did this time was took one measurement and then did the cat scan and checked it was in the right place and miraculously it was so all was a go. What I didn't know is that with each treatment they do a cat scan first to ensure it hasn't moved and that takes longer than the actual radiation it seems to verify everything is right. Friday is done and as my husband said "I'm 20% complete."
Regular appointments 8:30 am and 1:30 pm Monday - Thursday and if all goes well then will remove the device Thursday. I am taking it pretty easy this weekend as last week I still worked around all these appointments and expect to do so this week. I wish I had made some meals ahead of time and froze them but didn't think clearly. Sometimes it hurts; sometimes it's ok. Work around the no shower the best I can and have hair styling appointments Sunday and Wednesday.
I was a little overwhelmed on the stretcher or whatever you lay on on Friday but a lot of deep breaths and just try to be thankful this is moving forward. It is funny how you can have NO idea someone is going through this but it does feel weird to have tubes sticking out of one side. I do have to change the dressing today - not looking forward to that. Fingers crossed I do it right!
Thanks for listening. It is good to get it out there because hard for others to understand. My husband is being great but if I had him change the dressing he'd faint so don't think I'll try that.
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Good for you, Tampa! So glad things are underway. Indulge yourself tomorrow with a movie or your favorite food (even if you get it as take-out). And it's great that you've already made appointments to get your hair done. That will make you feel so much better.
I'm impressed that you're going to change your own dressing! Mine was far enough towards my right side that I couldn't manage it so it fell to my DH to do it. I laughed when you said your husband would faint if he had to change it because mine almost did! He turned green & worked on me so slowly & gently (he was SO afraid that he would hurt me) that I wound up yelling at him to JUST FINISH ALREADY! Ahh, the memories. (I also wanted him to take a picture of me with the catheters sticking out of my side but he couldn't stand to look at it any longer than necessary, so no pic.)
You may have some less than comfortable moments while the SAVI is in but keep telling yourself it's only four more days of radiation. Side effects are few & post-SAVI healing is pretty easy. Do you have an appointment with an LE PT? I saw one immediately after radiation & she gave me exercises to regain mobility & range of motion that really helped me recover quickly.
I'm sending prayers that your lung calcification turns out to be nothing. You've had more than your share of challenges in getting to this point & I hope it's smooth sailing from now on. Keep us posted; we'll be here to celebrate with you when you're done!!!
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Tampa, so glad it is going well with the device and that you're already 20% done!!! Changing the dressing will go well, I'm sure. I remember when I first changed the dressing I had a little panic when a couple of the "wires" came out with the dressing, but was reassured that was not a problem. You can do it for 2 days and the nurses will be back doing it next week!! Take it easy and before you know it, you'll be 100% done!!! Hang in there and don't overdo. Let us help you if you have questions over the weekend. Ceanna
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Hi, Tampa,
So glad that the insertion went well and you are undergoing treatment. You are right that it is weird to have something sticking out of you. I tried to avoid looking at it as much as possible. I had a large SAVI device (size 10) and they used six of the probes, so I had a large cavity, also.
I was keenly aware of having the device in me, and sometimes the incision site pinched a little and the fullness of the device was uncomfortable. But, all in all, it was of short duration (10 days), and I could count down the days until removal.
I did not prepare meals ahead, either, because I was not thinking about that kind of thing while going through this. Happily, I have a wonderful daughter in law who prepared some pasta dishes and brought them over, and some friends who gave me gift certificates to local restaurants that deliver. My husband also did his best to make quick meals or went out and got prepared meals so I did not go hungry (neither did he). I am sure you can figure it out and you should treat yourself anyway. You are going through a lot right now.
Yes, they do the CAT scan before each treatment to make sure the device has not moved and the targeted area gets treated. My team was very kind and gentle when hooking up the machine and dressing the wound.
Remember to relax and get some rest. You may feel tired in the next few days, so take it easy.
Hope your treatment goes smoothly and the follow up checkup on your lungs shows nothing to worry about. Sending soft hugs your way and keeping you in my prayers.
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Hi, Friends,
I went for my one year mammogram today and the Radioligist told me that I have an “area of concern” in my right breast near the chest wall and I need a stereotactic biopsy.
I asked if it could be scar tissue or something related to the SAVI or lumpectomy in that breast and she said that there is a slight chance that it could be necrotic fatty tissue left over from the radiation, but she doubts it because it does not look like it and I need the biopsy.
I am not thrilled about getting another biopsy like this because it hurt before and since this breast is sore and has scar tissue, going through it again will be awful and the doctor said this one will be “worse” because it is hard to pull tissue from that area.
I am now worried and apprehensive. Having gone through this just last year and now having the possibility that cancer has sprouted again in another area of the same breast is disheartening. I thought I was done with this and looking forward to getting on with my life but I guess not.
Did anyone have something like this happen after a year
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Irishgirl, I'm sorry you find yourself in a place of uncertainty. I hope they can figure out what is happening quickly to reduce the worry. No, I haven't had a mammogram that concerned anyone. I do have fat necrosis that shows on scan. I pray you will have a clear biopsy. Extra (((Hugs)))!!
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- Thanks, Ceanna,
I have an appt. with my RO on Friday. It was to be my one year follow up,but I guess will now be a consult.
I will update as I get more information.
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Irishgirl - my prayers are with you and hope that your consult goes better than the current angst and limited news. Also hope they can figure this out quickly and ends up being a clear biopsy. I've appreciated your support during this savi experience and you are right - you just want to "get on" with your life. Although I'm convinced whatever "getting on" is - it will now always have a different meaning. Glad you are providing updates - even from me as one of the newer members.
I did make it through the weekend and changed the dressings myself on Saturday and Sunday. Looked much better Saturday than it did Sunday (I can definitely tell when I take it easy more.) JKL2017 I loved your story about your husband changing your dressing - at least he did it! It is somewhat nerve wracking without that medical background as I really wished my PA daughter would have been home (although I don't think she would have wanted to change her Mom's dressing - lol). Also Ceanna you're update helped because I had one long loose wire I kept "tucking in".
I now have 4 treatments left. Blood pressure was sky high so that wasn't good but they still moved forward. I shut down earlier at work today and have been resting and just retook the BP and it was fine. I was worried they wouldn't do it this afternoon but they still did. If all goes per plan, the Savi should come out after my 1:30 on Thursday ...so just 2 more days....2 more days... I have another hair appointment tomorrow and then also will look forward to shower on Sunday - a shower - wow that sounds so good. This sponge bathing is for the birds. However, the idea of having this complete will be wonderful.
JKL 2017 I also noticed you take Arimidex? Any side effects or problems with it? That is what I'm to start after radiation and healing are done. I think there will always be even more angst every appointment and every mammogram but time to eat healthier and get back in shape - even if that means just walking more. I feel for so many I see at the radiation center and clearly what they are going through is not easy so I tell myself I should feel lucky - even though my surgeon keeps finding stuff.
Thanks for listening....
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Glad it's going well, Tampa. Only two more days? I'll be celebrating with you on Thursday (I'll bring cake)!!! And hooray for that Sunday shower too.
In answer to your question, I did take anastrozole (generic Arimidex). I experienced some significant SEs but please understand that a lot of people have no (or minimal) problems with it. After one year, my MO suggested a one month vacation from anastrozole (I think she believed that my SEs were unrelated to the AI & that a month off it would convince me of that). However, within a week or so most of my SEs had disappeared or diminished & I felt great! At the end of my month off, instead of going back on anastrozole, I switched to exemestane (generic Aromasin). So far my SEs on this second AI have been mild so I'm hopeful that I can stay on it as long as necessary.
My advice is to assume that you'll do well on Arimidex. If it doesn't work for you, try one of the other AIs. These drugs are a powerful weapon against recurrence & chances are that you will do well on at least one of them. Your ideas of healthy eating & exercise are also excellent. I lift weights & get aerobic exercise regularly & am more fit now than I have been in years (& I'm 68!). Exercise will help you cope with SEs & maintain bone density (& also make you feel good!). Last month I began eating paleo & it, too, has made a huge difference in how I feel. There are many ways to become more healthy; just find the ones that work for you.
You have a great attitude - good luck & keep in touch!
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Tampa,
How did your final treatment and extraction go? Hope all is well and you went out to lunch or dinner to celebrate!
Take it one day at a time as you heal.
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Tampa, hoping to hear how you're doing. Have you gotten in that first shower yet?!!
Irishgirl, how did your appointment go today?
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Irishgirl - how was your consult? I sure hope it was good news.
YES, I finished radiation Thursday afternoon and they took the device out. HUGE relief, tears of joy and a spring in my step all afternoon! It is soooo nice not to have that in my side. I did learn that it was a Savi size 6 and used 3 wires...1...4...6... got it memorized. The amount of precision, cat scans, reverifying images, checking for "chirping" are all images hard to leave behind and I'll be curious to see what this cost - my background is financial so I can't help myself. It feels fine...a little tender and have to go for a follow-up to make sure it's healing next week. No shower until Sunday but I went and had my hair washed and styled Wednesday night so since it's the weekend hair's in a ponytail and good to go.
I can't get through yet to my husband I'm not totally healed; he has a full list of stuff he wants me to do tomorrow. I just will have to see how it goes. My boss said I set the bar high since I didn't skip a beat at work...to which I said you don't get it. This was high targeted radiation in a specific area and I really didn't have side effects so I said this is not what you should use to set any bar for when team members may need radiation and then just gave him a look. There is a theme here...men. Again, many times it's been humor that has seen me through this. I am now very glad I tried this again. I'm still not sure why it wasn't in the right place the first time but now at least my radiation is complete and again I know I'm lucky I had this option.
Next I need to pick up some calcium and Vitamin D and I think I'll wait a few weeks before I start the Arimidex. I just want to try to pretend normal and get back to some sort of routine. Thanks again for all the kinds words and support - trust me - it is nice to have others who have gone through this. THANK YOU!
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Congrats, Tampa, I'm doing the happy dance for you!!! I'm so glad all went well this time. Enjoy your weekend, but don't feel you have to "do everything". (And, by the way, that first shower will feel amazing.) You may experience some fatigue but that's normal. Just take it easy for the next week or two.
I didn't start Anastrozole for almost two months; my MO wanted me healed & back in the gym lifting weights before I started depleting bone mass. So I'm sure you'll be fine waiting a few weeks.
And you're certainly right about men not getting it. It's not that they don't try. It's just that cancer & its treatment is like inhabiting a foreign country - you never quite understand what it's like until you've lived there. Your DH & your boss will learn more about all of this as time goes on because they will watch & listen to you.
For now, enjoy being SAVI-free & have a great weekend!
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Hey, Tampa,
Wonderful news! Sounds like things are going well for you, but don’t overdo it. Tell you hubby that you are not “all better” and have to heal from the inside out. You went through trauma. You have to heal.
I developed a skin rash a few days after treatment and my skin itched and was a little scaly, especially around the nipple area and it still acts up there sometimes, but that was the worst of it.
Now, a year later, I have a tiny scar where the SAVI was placed. My other scars from lumpectomy and sentinel node removal are so faded as to not be noticeable.
As to my consult, my BS showed me the area of concern. It is the tiniest speck of microcalcification. It was not there in January. She said that going forward, anytime that something like this shows up on a mammogram, they will need a stereotactic biopsy to see what it is. Oh, Joy!
We all know how much fun that biopsy is, and I am not looking forward to it on August 8th.
She said that if it is DCIS again, the good news is that because I had the SAVI instead of full breast radiation, I can have another lumpectomy followed by full breast radiation. I knew this from research I did before my surgery last year and this was one of the reasons I choose it, in addition to the short term radiation treatments. But, I was thinking that I may have a recurrence maybe five years after the original surgery, not one.
She also said that if she has to do surgery again, she will do a “lift” on that breast and do the other breast to match. I am not too concerned about having “perky” breasts, but I guess because she will have to cut the top area of my breast this time, and the other surgery was on the bottom, my breast would be cut in half and she wants to work on it cosmetically so it won’t look awful and she will do the other breast so that I don’t have one “lifted” breast and the other sagging.
Of course, if I get cancer again in the future, it is the third strike, and I will need a mastectomy. We will cross that bridge if it ever happens, which I hope it does not.
I won’t know what is in store for me until after the awful biopsy.
I will say that even if it is DCIS again, I am one of those in the unlucky 2% or so who have a recurrence after SAVI in the same breast, for some reason. The BS said that there is no reason to think that if I had full breast radiation last year (and they did not recommend or think it was needed anyway then) that this would not have happened. But, of course, if I had, Iwould need a mastectomy for a tiny speck of cancer.
So, if I do need surgery again, I am still lucky, thanks to the SAVI. But I may need to start a new discussion thread “DCIS after SAVI”.
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Tampa, I'm glad to hear the final treatments and removal went well, and hope by now you've enjoyed that first shower!! Don't let others push you to do too much too soon--our bodies need time to regroup after radiation, and SAVI incision needs time to heal. The nerve endings need time to settle down as it heals also. Isn't it strange how people think because we pushed through something difficult, that we didn't have pain and moments of worry and exhaustion. Maybe we women are too strong for our own good!!! Anyway, glad the treatment is behind you and praying for total recovery and good results from ongoing meds. Please keep us updated.
Irishgirl, sorry you are facing a new challenge. Keeping you in thoughts and prayers for the biopsy and beyond. Good to hear about the positive aspects of SAVI treatment and how it is giving you more options now. One day at a time. Please let us know how we can help, and let us know how you're doing.
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Irishgirl, thinking of you as your biopsy date approaches. Let us know how you're doing.
Hope everyone else is doing well.
Extra ((((hugs)))) everyone!!!
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had the biopsy this morning. It was difficult because the microcalcifications were close to the chest wall and it was nearly impossible to pull the breast in far enough to show the affected area. After countless repositioning, compressions and trials, it looked like I may have to undergo surgery just to have the biopsy.
But, in a last ditch effort, the technicians had me reposition one last time, lying on an exam table in a most uncomfortable angle to try yet another shot at viewing the area. The doctor came in and looked at the pictures and said that he was able to see the area, albeit just a little, but he felt confident that he could get the sample.
He did the stereotactic biopsy and confirmed that he had a good sample! He put the metal marker in and sent me on my way with tons of ice packs.
It was uncomfortable, but the biopsy itself went smoothly with relatively no pain. I am grateful for that, since my experience last year was quite painful and I wasapprehensive about going through that again.
Now, I have to wait for the results. Fingers crossed!
Thanks, Ceanna, for your hugs and support as I go through this and thanks to everyone on this site who are a sounding board for the various frustrations and things that we all go through.
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Irishgirl, I'm glad they persevered and were able to get the biopsy done without surgery, and very glad you experienced little pain. You must be quite flexible--sounds like a real workout!! I just remember the biopsy table being very uncomfortable!! Praying for a benign outcome and peace while you wait for results. Extra gentle hugs! Ceanna
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hello. Been reading SAVI posts for a few hours thank you for sharing. I'm going in right now for my scan to see if I am a candidate. Lumpectomy was 2 weeks ago today. IF I am a candidate, treatment probably won't start until the 27th.... isn't that a long time to wait? A full month post surgery? Still having lots of fluid build up and pain from surgery - breast surgeon thinks my fibromyalgia was triggered. Worried about the pain of the device, insertion, 8-10 days with it in, treatment, and removal..... and thoughts, advice would be appreciated. Thanks.
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myyoga, glad you found us even though the reason you're here is for future treatment. Glad you might be a candidate.
I had almost a month between my LX and the insertion of the SAVI device, then another 10 days before I was done with treatment. Sorry to hear about the fibromyalgia and problems with fluid build up. I had a seroma in my sentinel node biopsy incision but they went ahead with the SAVI, and strangely, the seroma improved with radiation! They will numb you before insertion and you may experience pressure as its placed. Most of us did not have pain, as such, while the device is in, but you may feel uncomfortable and have to be careful about what you do and how you do it. You will probably be on an antibiotic while the device is in also. No showers, so make plans for hair wash and refreshing cleansing wipes. Fortunately, it's only 10 days, and with twice-a-days, you'll be surprised how fast those days go!!!
Let us know if you're a candidate and please ask any questions you have. Several of us here will probably weigh in with answers or ideas. All the best. Ceanna
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I, too, was a month post lumpectomy before SAVI insertion. I think you need time to heal from the primary surgery before your body is assaulted further.
If you are a candidate, remember that treatment is of short duration, instead of six weeks' every day treatment.
It is uncomfortable, to be sure, but not really “painful", more like a huge splinter inside your breast. But, once treatment is done, you feel an immediate release and then can begin your healing process.
I do not regret it at all. And, as those who have been following my journey know, I have had a recurrence of microcalcifications one year after treatment. I am hoping it will be begnign, but if it isn't, the SAVI has given me one more chance to have a lumpectomy and full breast radiation. Hoping I do not have to do that, but extremely grateful anyway.
Life is a journey and there are hard times sometimes. We do what we must and keep going forward. I am grateful that treatment options have changed so much since my grandmom has breast cancer 40 years ago.
myyoga,this is doable. You will find an incredible team to help you and friends here to listen and encourage you. You will do what is best for you. We are here if you need to vent and if you want to contact any of us privately, you can do that too.
Best of luck to you as you move forward in your treatment. Sending love and hugs your way.
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my biopsy was positive. I have DCIS again in the same breast. My only option now is surgery again, sentinel lobe removal and six weeks of full breast radiation. At least that is what it seems at this point. I see the BS and radiologist next week to plan treatment.
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Irishgirl, I'm so sorry for your results. I'll be praying for good news from the doctor appointments next week and your strength in moving forward with another round of treatment. Blessings, Ceanna
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So sorry, Irishgirl. Stay strong - we're right here with you.
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Oh, Irishgirl, I’m so sorry to hear this news. Keep us posted and know that we’re all with you
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Irishgirl, how did your doctor app'ts go this week? Thinking about you.
myyoga, did you end up a candidate for SAVI? Hope you are doing well.
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Hello Again,
Irishgirl, sorry to hear the news. How did appointments go this week?
I decided against SAVI APBI. I was having a really, really tough time post-op lumpectomy, sentinel node removal - tons of pain and swelling, lots of fluid accumulation, fibromyalgia was triggered and the nerve pain was almost unbearable. Surgeon was so worried about my pain that she suggested, if I chose to go ahead with the SAVI, that she do the insertion in a surgical procedure instead of in the office.... BUT, I also have a terrible time with surgeries (17 so far!) and have a genetic tendency for malignant hyperthermia and even with all the precautions I have trouble... so she was worried we'd be inviting 5 more problems to fix one or two problems. Then my radiation oncologist - after reading through the reports from the two weeks post-op (breast surgeon, radiologist who drained me twice, medical oncologist), he said if I was even slightly worried about pain, he recommended NOT doing it. Even with all that, I was still thinking, "I can do this! I can tough out! I can make it through this!" It took a dear friend who is a 6-year survivor of a hellish breast cancer (dx at 28, triple positive, radical BMX, 40+ nodes removed, hysterectomy, 18 mos of chemo, 12 mos of radiation, tamoxifen plus other meds... hellish!) .... she said to me, "I have no doubt you CAN do it, but why do you have to? Who says you have to do the treatment that seems and feels hardest for you? Same outcomes, why do you feel like you HAVE to choose the toughest one?" (Long story there, childhood/adolescent trauma survivor.... "toughing it out" is what I do to survive!). Anyway.... decided to pass on having more incisions, 10 days of a device partly in and partly out, 10 days of no showers, 10 days of trying not to move very much to avoid moving the device to avoid the pain that comes with readjusting the device, 10 days of a large dressing in an area that is STILL severely swollen and hurting like hell, 15 days of antibiotics (great for my messed-up-from-surgery-still GI system), missing 8 straight days of school, 10+ days of intense heavy pain medications again and the nausea and headaches I get with all of that, 14 or more scans in a very short time..... just did not feel like the right choice for me.
So.... I will be having traditional external full breast radiation - likely 16 to 21 sessions, accelerated doses (incl boost). We're waiting on a tumor board decision on whether to do chemo or not...... my oncotype dx score was 14, Ki-67 was 56.8. Lower edge of intermediate, my MO felt no chemo but I'm not sure and he was going to present to tumor board anyway, so we decided to have him do that and use their recommendation as our 2nd, 3rd, 4th, etc opinions on chemo or not. Find out that decision on Tuesday afternoon. Following chemo (maybe) and radiation, I will then likely go on an AI (Letrozole).... pretty sure my blood work is menopausal... had it done a few weeks before I was diagnosed, just can't remember the results! MO is getting those results. Hopefully, by Tuesday afternoon we'll have a better idea of what's to come. Then meet with RO on Thursday to plan radiation (if I end up not having to do chemo.) Thanks, ladies!
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