Experience with Brachytherapy
Comments
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I was swollen after LX......and it was awhile after Savi that the swealling was completely gone.....a couple months if i remember right.
Glad its over for you ladies and youre done -
Finish up Tuesday and I can hardly wait to stand under a hot shower, sleep in my bed, and return to a normal routine. I know this beats the 7 week rad schedule but it is tough none the less. Glad you ladies have had the harpoon removed. Have had reaction to two antibiotics and can't take pain meds so it has been a rough road but this will be behind me in a few days. Sorry if there is a negative note. I really do feel positive about this procedure but it is not a cake walk.
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One week post radiation treatment. Felt tired all week but the doc says that is totally normal. The incision is healing nicely but I still can't swim for a week or two, that's tough in AZ in the summer time! This stills feels like a bad dream that I hope I wake up from.
Next stop is the hematology oncologist and AI Inhibitors. So not looking forward to that. I am ever hopeful that I will do well on the meds and life a normal life. -
I too just finished partial breast radiation (brachytherapy)using the Savi device. The choice of which device depends on many factors including what is available from your radiation oncologist and the shape and location of your cavity. I had to wait almost 4 weeks after surgery before insertion because my lumpectomy cavity was so fluid filled it didn't close up enough earlier. Waiting and checking each week was hard and I found the treatment process more difficult than I was prepared for. I'm glad I chose that method but it wasn't a walk in the park. I'm a psychotherapist with flexible hours and worked pretty much full time throughout the treatment. I spent at least 4 hours each day devoted to treatment, even though I was only 10 minutes away from the hospital, including driving, parking, walking, changing, an x-ray before each tx, waiting for this and that, etc.
Two more things: my treatment team really likes the Savi device because of its versatility and their greater ability to control exactly where the radiation is distributed, so that certain tissues can be avoided like in my case, my ribs. Secondly, I want to thank everyone here for their contributions to this wonderful website. It has been so helpful to me!
It was never really painful, but at times sore as the device was very close to my chest wall and would hurt if, during treatment, it was pushed into chest wall. Insertion under local anesthesia was difficult but not painful. I felt quite tense and stressed throughout the 8 days the Savi device was in place. I had a hard time dressing to cover the lump formed by the exterior part of the device resting between my boobs, covered over with 4x4's. Usually it's under the arm. I slept as well as I usually do. I broke out in an intense head to toe skin rash, like measles, one day right while I was changing into a treatment gown, which I think was caused by nerves. My doc thought it was an antibiotic reaction. Benadryl took care of that nicely. Even though the Savi device wasn't painful, my body didn't feel right the whole time, like I was having an inflammatory reaction to this foreign body. I was never so happy to have something removed, which also was not painful. The device was in for 8 days because of an intervening weekend and 2 days between insertion and the actual treatment starting. Everyone at Beaumont Hospital in Royal Oak, Michigan was professional, kind, helpful.
Again, I'm glad I chose this type of radiation treatment in spite of the challenges, mainly because of the lack of radiation exposure to healthy tissues and the short time frame. If I had the option, I could certainly see myself not working, getting a driver, and taking something for anxiety during the treatment. It was kind of like having a root canal twice a day.
One week later I'm healing well. I'm still a little tired, although I went for a two mile walk this morning. I felt ill for one day, like the flu, about three days after completing treatment. Other than that I carried on in spite of fatigue. I'm 70. I loved the 'holy shit' and 'thank The Lord' comment above. My thoughts exactly! -
Glad you ladies are on the other side of this.........
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Am going tomorrow to have the savi device implanted. I will be glad to share with you my experience. I was where you are last week with trying to decide. But this device is cutting edge and only available under certain conditions
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Good luck Patti!
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I have been thinking about things I wish I would have known before starting brachytherapy. Firstly, my oncologist will only insert a cath within 2 weeks of original surgery. So, if you are just diagnosed and interested in brachy make your appointment to see your radiologist within a week of surgery. Second, if you have the choice, have your radiation oncologist insert and remove the device. It will save you considerable time and trouble. Professional courtesy would dictate sending you back to your surgeon. In my case, she was out of town so my oncologist inserted the device. It took some painful adjustment to seat the SAVI just right with cat scans between each. If I would have gone to the surgeon for insertion I think it would have been worse.
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Had 'savi' brachy therapy also. Had device removed a week ago and I agree while it was no walk in the park, very grateful to have been a candidate for this type of rads. My surg onco inserted device and rad nurse removed it. Insertion and removal while a little painful was the easy part. Having this device in place for 9 days was rough but constantly reminded myself the alternative was rads for 7 weeks for 35 treatments. That helped bring it back into perspective. The rep from the savi company was present when my device was inserted and said savi company recommends that device be placed within 1 month time frame of surgery. However every doc has own preference. Mine was placed one day before the month was up due to scheduling problems. Ended up with air pocket in cavity which required a pressure binding and delayed rads for one day. My best wishes to all of us for a good outcome to all of this.
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I completed my rad with SAVI on June 14. It still feels warm to the touch and now a bit itchy internally. I was surprised by how painful and uncomfortable I was with the device for the 9 days, as most posts only talk about mild discomfort and how pleased not to go thru the 6-week external rad. The surgeon and rad dr also never warned me how painful it might be, and I do think this should be taken into consideration when weighing your options. I would still have gone with the SAVI, but at least I would have known what to expect.
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I had NO pain whatsoever during my experience - I did hear from a friend of mine that had it done, that she experience discomfort when putting the device in, and was told it was because her breasts were small. Everyone experiences treatment in such different ways, with their pain threshold and their individual situations.
Glad its over for you! -
Diane MS1- I too wish I had been better prepared. I would choose savi again only because I know what it is and would be better prepared, but I too found it somewhat painful. I still have minor pain and the savi sight still drains somewhat at night. I still have a very red breast and I completed rads on 6/18. Being a candidate for brachytherapy meant that we were very fortunate to have early stage BC and required no chemo and for that I am very thankful. I start Femara next week and am dreading it. Praying I don't experience the dreadful side affects that I have read about. None of us asked to take this journey but here we are and I pray for good outcomes for all us.
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Thanks, Sbab. I have heard a lot from people saying what a breeze it was, but not too many whose experience was like mine. I'm a C cup and the tumor was not close to the chest wall, but the Savi went in near the node removal site under my arm and across my breast to the 1030 position. The drive to the rad was 20 minutes of bumps and ruts, and every movement was painful. The woman getting her rad at the same time as me was more a D cup and she said she considered asking the RO to remove it after a couple days. Her husband talked her out of it, thankfully. I get my oncotype score on Tuesday and prescription from MO. He wants to put me on an AI but I'm very fearful of the SE. I'm retiring Dec 6 and thinking of asking him if I can begin then rather than now. My breast is also still warm with a red rash over the rad site, but don't see the RO til the 24th. The shooting pains are gone now, but still numbness under upper arm, so hoping I can still type when I go back to work on 30th
. Hope you're not too hot over there!!
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wow - didnt realize that people had such discomfort. I went to the office of the doc who invented the SAVi - tho I had his wife for my doc. Not sure if that is why my experience was so pain free or not.
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My lymphnode site has healed well but still have a lot of discomfort from under arm to elbow. Don't see rad onc for another 1 1/2 weeks. Under arm still numb and savi site very tender. My breast looks like it has been through a war but hoping it will return to normal soon. My surg onc would not do onc dx. Said it was not necessary for such small-early tumor. I am not completely comfortable with that decision but I guess I have to trust my onc surg.
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I consider myself insensitive to discomfort/pain. That being said how long before I quit getting new blisters and the redness and the burning completely disappear? I'm in my 5th week post SAVI. My tumor was stage 1, grade 3, 0 node, ER+, PR+, HER2- invasive carcinoma very high on my right chest. I am radiosensitive (no more dental x-rays because of blisters and sores). My site is not infected. I guess external radiation would have been much worse for me, than the internal SAVI. given my radio sensitivity. -
Hello everyone,
I'm new to all this, as I just got the first biop results Oct 21, which was DCIS intermediate grade. I did do a lumptectomy and that biopsy came back with clear margins, DCIS grade 3 comedo type with necrosis. I had been contemplating skipping all therapy after the lumpectomy but reading the literature and knowing the higher grade of cell dysplasia made me opt for brachytherapy. The rad onc told me I was Van Nuys score 7, for which radiation was pretty much mandatory.
The real reason I'm writing it to share with someone who's contemplating going thru brachytherapy it just HOW MUCH MORE this hurt than I anticipated. The Savi catheter insertion felt pretty brutal despite the local anesthesia used and the pointy tip of the catheter is poking me from the inside and really hurt a lot for the first 48 hours. I have now had the catheter repositioned once, and it is better. It does seem to get better with the passage of time. All this kvetching notwithstanding, I do firmly believe I will be glad I did the short version of radiation rather than the long version, once it is over.
The other thing I'd like to share is for others not to try to just guts it through with a stiff upper lip and believe the "all you need is tylenol" advice from the surgeons and radiation oncologists. I am actually a trained medical professional (a nurse practitioner) so I guess I should have known better...but I would definitely suggest to others contemplating an internal catheter for brachytherapy to anticipate some actual pain (like 5/10) for a couple of days and ask for pain meds (and even anti-anxiety meds) and be ready to use them. If you don't need them, great! But don't let yourself sit around feeling awful if you can be more comfortable with short term use of appropriate meds. I tried to keep working thru the first few days of insertion/imaging/radiation and avoided both narcotic pain meds and anti-anxiety meds as I felt I needed a clear mind...but in retrospect that was a painful mistake!
I have four more days of radiation to go and will definitely stay away from work for the next five days. I'm sure not as tough as I had thought!
Definitely plan to take time to take care of yourself, including staying home from work. I wish I'd been less hard headed! -
Just a follow up note: I finished the rad tx, and they pulled the catheter a few days ago. Maybe I'm an outlier...but I will say it hurt like hell when they pulled it out. I don't know why they don't use lidocaine for procedural pain like this. It took most of the next 48 hours to get over feeling quite brutalized by the whole thing. If you can deal with having a cavity filled without novacaine, then stick with the "two Tylenol" approach for catheter removal. However, if you don't want very intense, sharp, albeit brief pain, ask for a local anethestic! -
So sorry it was so painful for you. I experienced no pain whatsoever.....but have read others reports to the contrary on other sites as well. I did take a pain med when they took it out - cos i was scared, maybe that helped, i felt nothing....just pressure. Hope your recovery is speedy -
Sorry you too had a fairly bad experience. Now that I'm five months post-Savi, I still feel traumatized. In retrospect, I would have done the 30 days of external if I knew then what I know now. I know not everyone has a bad experience, but in talking with my nurse navigator, she feels that patients like me who have it inserted from the side and spanning the entire breast to the other side have had a much harder time. I still have a fair amount of discomfort in the tumor area, and I blame the internal radiation. It's a choice for everyone to make. I just wish they had been more up front about what could happen. And PS, nothing for pain for me either when it was removed. I took a pain pill before, but still screamed when it was removed. Luckily, it comes out fast. -
Hello DianeMS1,
Thank you SO Much for your post. I was sort of starting to think I was a fairly isolated case. Not that I wish the discomfort on anyone else, just the usual "misery loves company" thing I guess.
I am now almost at the two week mark after the doc pulled the catheter, and I'm glad to say the discomfort level has dropped to the minor annoyance level. I did have about four days of a sort of emotional trauma, just processing the feeling of being so traumatized. The counselor at the Rad Onc office did offer the perspective that with the rapid move from biopsy to lumpectomy to accelerated radiation, there is sometimes just not enough passage of time to process everything. So time has helped! Now that I feel more energetic and am back at work, the intensity of the experience has certainly faded.
Thanks again for sharing your experience with me! -
I had brachytherapy last June and while I am still thankful that I was a candidate for internal rads, I have to say it was not a walk in the park. I did not find it brutal but very uncomfortable for sure. Lidocaine was used for insertion and topical lidocaine for removal. Both were painful but tolerable. I was due for follow up mammogram last month but opted to skip until yearly, due to fact that breast is still painful and just the thought of squeezing the poor breast brings tears to my eyes. All Oncs were ok with that decision. All in all I would do internal rads again if I had to make that choice. I had skin burns and savi site still is not 100%. Onc said that had I had external rads the skin burns would have been far worse since internal rads is supposed to spare skin trauma and it occurred anyway. I am sorry that any of us have to be here but thankful to have this behind me. My thoughts and prayers for all still waiting for treatment. -
I know, sbab49, I was really scared to get my 6 mo mammogram last week. Dr would only say take 4 advil and let the tech know how painful I still was. I did, and she did a great job, really fast in and out to lessen the discomfort. It was uncomfortable, but not all that painful. I expected it would be sore for a while after, but it was not. Phew! -
I am scheduled for a lumpectomy on my left breast next Tuesday, Dec. 3 (Age 51, DCIS, Stage 0, Grade 2). At this point, my surgeon is recommending accelerated radiation. I have done a ton of research, and I'm still unsure if this is the path I should take. Sometimes, too much information is a bad thing, you know?
Blessings to you all!
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CLAIRE - I remember when I was trying to decide - it was overwhelming to look at so much info......I had my sister research it for me. It really helped to have someone who could take a clinical look at all the info and help me make my decision. Now a year + out, I feel I did the right thing for me......I would do it again if faced with the same situation........ For me, it was a pretty easy experience. Not painful, mildly uncomfortable......but doable for sure...... Wishing you everything you need to find your way thru this....and make the decision that is right for YOU...... PM me if you want -
Dear Claire,
I hope you had time to sort out all the options and you are well along which ever path you have chosen.
I am now one month out from ending accelerated rads and, miserable as the experience was at the time, I will say that now it is all a pretty distant memory. I have only occasional slight twinges of breast pain, all the skin poke sites (biop, lumpectomy, Savi insertion site) are healed with minimal scarring. I had very little in the way of skin harm from the rads, just slight discoloration and the skin pores look bigger and coarser.
With 20-20 hindsight, I do not regret my choice of accelerated radiation therapy.
I also remain really sad/angry/annoyed that the current state of science/research cannot give good enough prognostic guidance to help women safely decide to skip RT altogether when they have small site, low/med grade DCIS. We know a large percentage of women could probably live safely with DCIS treated with lumpectomy only...we just don't know which ones! and none of us wants to roll the dice...
So, safe travels through the treatment pathways you've chosen.
Thinking of you,
RimRoc -
I'm facing SAVI catheter insertion tomorrow. I think I'm glad I read the discussion so I can be better prepared. Not shy about speaking up. Think I still have pain meds from lumpectomy, but will make sure to ask in case there's something else I may need. I'm happy the med team supported my decision to be off work. Am now wondering how ready I'll really be to return the Monday after SAVI. One day at a time, eh? I will do whatever I need to ensure I'm really ready to return. I hate that others have to pick up the slack, but we know where our priorities our, right!?
Thanks to be everyone who shared their experience. Don't know how it will be for me but I plan to kick it's, you know what! Not without help, both traditional and alternative (nothing wacky).
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Update from last night's post. SAVI catheter inserted today with no problem. Lots of chatter to keep me distracted BUT I can honestly say the only discomfort I had was the brief sting from the lidocaine. They were very thorough explaining what to expect so there were no surprises. The doctor also asked me several times if there was any pain. There was pressure as the catheter entered the lumpectomy cavity, but no pain at all. Procedure took all of 15 minutes. I felt so good, I stopped off and got some lunch on the way home. Its a few hours post procedure and I feel no discomfort at all.
I was initially told no showers, but the nurse said if I have a handheld shower head, I can use it as long as I don't get the area of the catheter wet. Will have to do my hair in the sink.
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hope my multiple posts aren't annoying. Just trying to journal for those facing brachytherapy. So....several hours after the catheter was inserted some pretty significant pain hit. Four things i learned...for my experience:
1). Don't try and "brave it" through the pain. Initially took 1 extra strength Tylenol. About an hour later of "being brave" I took a second. Took 2 before I went to bed. Made a big difference. Pain disappeared other than a few twinges.
2) my catheter reaches around toward my back making the combination of changing the dressing and fitting those wires into my bra quite a challenge. No help at home. A friend of mine who's in health care said to try a camisole. I'd purchased a couple from Soft Surroundings a year or so ago. It was the perfect suggestion. I stepped into he Cami and pulled it up which made capturing the wires, with minimal jostling, pretty simple.
3) I just need to be cautious lifting and twisting objects with the arm and hand on that side. Nothing awful happened. I could tell it was causing some discomfort.
4) Definitely need more gauze than they gave me. Keeping the dressing dry is important.
I slept great. Slept in. Am up and about with no pain. Will see what the rad oncologist says on the 6th.
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i went to a cheap hair cutting place and had my hair washed.....i think they charged me $5......it was worth it! I would have gone to my regular place, but its so hard to get in!
Hang in there........it'll be over soon!
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