Starting Radiation January, 2022
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Hello everyone - first of fifteen sessions today. The breath holds were much shorter than I anticipated. Very easy. Will meet with RO every Monday.
TXLorelei - within the plan are diagrams that show where the radiation will be applied and some calculations of the radiation doses hitting different areas. It looks like they use the CT to calculate the volume of your organs and the treatment area and then run the math to show how much radiation would be absorbed under different scenarios. I haven't had a chance to speak to the RO since it was published, but if my amateur interpretation is correct, my PBI hits about 30% of my breast, with just a smidge (medical term) hitting the lung and heart under the average scenario.
Good luck in your treatments!
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Mermaid, I totally agree about the tattoos
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hi everyone,
my wife had her first radiation session today. Overall it went well, but we can already see how five weeks is going to be a slog, especially with a four year old daughter to care for during it.I had a question for the ladies here. After the first treatment, did anyone experience any swelling? My wife feels a bump on her chest that was not there this morning. It’s close to the surgical site. Of course no definitive answers but wanted to see if this (or other general swelling) was common after just one dose.
Hope everyone is doing well!
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Hi, All! Thanks so much for the kind wishes for my dad. He is continuing to improve. He is a tough, very determined guy who doesn’t like to be kept down long, so he has that on his side during recovery. I am counting down the last few days before my rads start- the first actual treatment is on my husband’s birthday- Wednesday- lucky him! Did anyone else here receive a prescription for Mometasone Cream to use during treatment and for a few weeks afterward in order to minimize reactions? I also ordered some Calendula cream that was on the recommended list and will go ahead and begin using it as soon as it arrives tomorrow. Just curious as to what other ROs are suggesting.
TXLorelei- I don't have my official treatment plan yet bc my RO was on vacation this week. I had the mapping, but didn't get to meet with him directly at that time (another RO checked my positioning and all that jazz). I have my "dress rehearsal" on Tuesday, get my new/confirmed markings (right now, I have a bunch of red x marks under tegaderm), and do a double-check of everything. I am really interested in what I find out. I know from the nurse that I will be getting supraclavicular and lymph node treatment with the whole breast treatment. I have a tissue expander, so I'm really hoping my skin behaves and doesn't cause any issues with it.
Mermaid- I am really hoping they can safely ditch a boost or two at the end. However, if they don't, I plan to leave immediately from radiation that last Tuesday morning and fly out for the rest of the week (through Saturday at least). I won't know the decision until the week before time for the boosts, though. The bummer is that one of the special events - board dinner- is on Monday and it is at a private wildlife preserve with a giraffe, rhino, and several other animals. I was there for the planning trip, but would love to not have to miss that experience! It's not one of those hokey, super public places- it is a preserve and is very animal-care oriented. Fingers crossed. How is your trip planning looking? Any better idea yet? And those tattoos do NOT sound like fun. I was so happy to learn that my facility no longer does the tattoos- they use permanent marker under tegaderm. The tech said my RO hated them bc he felt like they provided a permanent reminder of breast cancer; I think it could be viewed either way- as a negative or as a positive reminder of what has been overcome at the other side of this part of our experience.
Dicon - Nooo! Geez! I am so sorry for the postponed port removal, but even more so for the pain you have been having. How are you now?
MFK- Woo-hoo! Start marking those sessions off the calendar! I’m so glad your breath holds turned out to be a breeze. I hope everything else goes just as well. Loving the “smidge” term- we Kentuckians use that term pretty regularly, but I cracked up at your medical term classification.
Dres - The daily grind of rads will def be a bit tricker with the little one. Let’s hope your wife doesn’t experience fatigue and has minimal side effects throughout. I don’t have any insight on the bump, but I feel like from here on out, every lump, bump, ache, and pain will become much more of a potential alarm than before BC. I hope she speaks to her RO and finds out it is nothing to be too concerned about. Keep us updated.
I hope everyone has a great Friday and enjoys the weekend radiation vacation
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Hi Jen - I asked the technicians at my mapping about ordering Miaderm or any other products in advance, and they said not to bother. They're an Aquaphor shop, Dove white soap, and possibly a calendula product that's available at Whole Foods. We'll see what else the RO says when I meet with him on Monday for a check-in.
Three down, twelve to go. Drinking water like I just got a COVID vaccine. Trying to get more protein in my diet. So far, so good.
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Hi everyone,
just wanted to update. The “bump” for my wife is nothing. Doctor said that it’s a rib but feels protruding bc of the surgery. Long story short, don’t minimize your concerns, always reach out, but things may turn out to be benign.Related to radiation, has anyone had their rad onc provide a hydration film? My wife is going to have one placed over her breast starting next week and apparently it avoids the need to lotion the area for the 25 session duration.
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MFK- I wonder if it’s the same Calendula cream on my recommended list: Boiron Calendula Cream. I’m drinking tons of water, too! My friend who is a physical therapist got me to try her Mio water enhancer and it has really helped me boost my water intake. I like that it’s such a portable little bottle and that you can use as little or as much as you want.
Dres123- what a relief!! So happy to hear it was nothing to be concerned about, but also glad you guys checked it out. Is the film you’re talking about called Mepitel? I know several places in the US are now starting to use it. I asked my RO nurse about it, but she didn’t know what I was talking about. My RO has been on vacation, but I plan to ask about it when I see him next week
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On Thursday, I asked my RO about my treatment plan, so she had their computer guy show me my mapping session 3D photos with the treatment areas highlighted. They pointed out how they avoid the lungs and the esophagus. Very informative!
Luckily I have not had any more shoulder pain. Still no skin issues, either.
Jen, you mentioned that your supraclaviclar lymph nodes will be targeted? Do you have to wear a head restraint? To keep my neck still, I have a horrible plastic mesh thing I call my supervillain mask. It's so tight that even moving my lips to talk is difficult. The rads tech apologizes every time she straps me in.
I just tell myself that I'm nearly a third of the way through - 9/30.
Good luck to everyone!
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Just started on radiotherapy after surgery in Sept 2021. Delayed caused by a very poor breast cancer clinic in the UK. After 3 sessions, whole breast, axilla lymph nodes, supra clavicular fossa lymph nodes, and chest wall. Having 15 sessions at 40 Gy. Also, they want to start me on Zolendronic acid infusion next week and I am dreading it. Starting to get tired and have sore throat after treatment has started. I use Pharmaceris cream twice daily across whole treatment area before and after radiotherapy at the moment skin reaction is just starting to get a little itchy, does not help when the radiology staff did not read my medical notes informing them I have an allergy to the glue they use on plasters and items such as the breathing monitor they place on your abdomen to enable Breath hold technique. We appear to have a team of radiologists in Wirral UK that have a distinct lack of knowledge concerning medical notes and warning markers on them. I am using a head restraint to keep head still during treatments to supra clavicular area. Breast itself feels a little thicker and is a little red underneath along scar line. I am very unhappy with how my breast looks, it to me looks like an arse with two bum cheeks. It is vile, sorry but I prefer to be honest as the medics involved with me in the past 3 years have been very dishonest.
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Hi all,
I had mapping Friday and will be starting my third round of radiation next week. Let's hope this is it!
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Hi all, I am now only 6 sessions shy of the end of my radiation. I am in the prone position and it seems to be working out well. My skin shows no signs of the radiation, and my breast is only slightly overall swollen. I practically can't tell I'm getting treatment. So I haven't used any type of cream at all. I had a concern about the treatment seeming "different" from last week, and my doctor and his physicians assistant and my two technicians all handled my concerns really well. It turned out that the table moves in different ways depending on the type of imaging they do. And sometimes the imaging is a different type. The techs showed me how the images "line up" really well every time so the radiation is going in exactly the right area each day to get the whole breast and not more. I was really tickled how they took the time to explain everything and calm my nerves.
I hope things go well for all of you doing treatment.
For those who mentioned my concerns about my port, yeah, still "waiting" per the doctor. I can't seem to get a good answer as to when it is coming out. It does still bother me, but oh well, with everything else going well, I'm just gonna wait...
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Had my weekly check-in today. Nurse checked weight, blood pressure and oxygen saturation (100%, thank you very much). Met with the RO.
Jen - Yes, it's the Boiron Calendula Cream. He gave me a sample. He framed it as personal preference when choosing between the calendula cream and the Aquaphor. The instructions are to use them prophylactically and not to wait for symptoms to arise. I've been using the Aquaphor, so I think I'll stick to that but the calendula cream will be a nice alternative if I'm going out somewhere that requires a bra and real clothes.
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TXLorelei- So glad you don’t have to deal with the shoulder pain, AND to hear your skin is holding up well! Definitely reasons for celebration! I have only had my mapping CT- since my RO was on vacation last week, and today is a holiday, I haven’t had my “dress rehearsal” yet. Tomorrow is the big day. Ughh- no one has mentioned the mesh mask think- I love your supervillain mask name for it- I have told everyone that I am fully expecting to glow in the dark and acquire superpowers after all this! I’ll let you know after tomorrow. You’re getting there- 1/3 of the way there!!!
Drkcs- It sounds like your target areas are the same as mine, but you are on the shortened schedule of delivery. My RO talked about the shortened plan, but said he wanted to use the “slow cooker” approach on me since I have a tissue expander in. I am so, so sorry to hear of the issues you have had with your medical team. My daughter has a latex allergy she has acquired and she has had some similar issues with med staff not checking closely before using something on her. For some hopefully positive info- I had a Zoledronic Acid infusion on January 6. I absolutely dreaded it and expected to be miserable. Based on my own research and posts from here, I super-hydrated myself and also applied lidocaine cream covered by a band-aid to my arm where the IV would be (I’m down to one arm for jabs and blood draws, so it’s gotten quite lingual lately). I removed my band-aid before the IV, continued hydrating, and everything went smoothly. My only side effects were a bit of fatigue and chills the next day- no fever or other illness. Hopefully, you will do equally as well or better! Someone here referred to it as a “suit of armor” that protects us from bone mets and bone deterioration- I have latched onto that and used it to add to my resolve. Keep us posted!
star2017- geez! Let’s hope so! You really should have gained superpowers by now. Hoping this is the easiest of the three and that it is the last one!
blue- I love that your team is so willing to take the time to thoroughly explain everything to you! And it’s fantastic that your skin is taking it like a champ!!! I hope it continues to do that well! Dang that port!
Mfk- excellent to know! I have been applying the Boiron Calendula Cream for the past several days- it feels nice and is definitely not greasy. I have used the spray version of Aquaphor for years and have a few cans of that on hand- it is great and I think it is less messy than the original version. Bonus- no rubbing it in!!! I may end up using both- Calendula, then spray Aquaphor over top? Of course, I’ll also use my prescription cream he gave me. Everything I own will have a big oily spot over my left boob.
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Thanks, Jen. Thankfully the original site (breast) has been quiet since treatment 3.5 years ago. First met seems to have responded well, so hopefully this one will too. I have a great doc and team, and they make radiation a pretty smooth process. Office isn't too far from work either.
Wishing all of you the best. I used aloe immediately after treatment and aquaphor later in the day pretty regularly. Skin responded well, tho any site with a crease did end up needing the silvadine prescription cream. It healed fine.
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Well, finally can mark one session off the calendar! Hooray!!! It was pretty easy- had a brief mental emotional wave bc it made this cancer thing feel “real” again, but no big issues. Having my arms above my head was fine, except for my tissue expander pulled quite a bit on one of the tabs sutures into my chest muscle. Definitely tolerable for a short time! They placed a warm, wet towel over my right chest during radiation (of course, it didn’t stay warm long 😳😂). Anyone else have that during rads?
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Hello everyone! It looks like I may be joining your January group a little bit late. I had my initial appointment with my RO yesterday and because of a cancellation, I am going tomorrow for my simulation. I will be getting 16 doses of radiation and 4 boosts to the scar area at the end. 4 weeks. Our radiation location is about an hour away and I'm still working full time, so will be a pain to do, but we will make it work. Luckily my husband is retired and has planned to be my driver.
I'm anxious to get this started and very hopeful that I don't have a bad reaction to the radiation. I have two of my cousins coming over from England March 3rd and am hoping to join them for a few days since i haven't seen them in two years. I will be picking up my script for mometasone tonight.
Thank you for starting this thread!
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KotchAJ - Welcome to our merry band! Happy to have you. Now I'm going to cop to being so lucky that I can wake up and be dressed in my gown in the waiting room, working on my Wordle, in less than an hour.
There's certainly a level of anxiety wondering if/when side effects will occur. I've finished 7 of 15 fractions and every day I keep looking to see if my skin appears different. So far, so good.
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I had my first treatment today. Everything went as expected. In the past I've been treated in the summer, so having less layers had made the whole process of getting in and out much easier. Will need to plan better for this winter round!!
They're treating a small spot on my femur. Process was pretty quick.
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KotchAJ- Welcome! So happy to have you with us! I actually started the thread, but it looks like you and I will both be the late bloomers of the crew. I hope your simulation goes well- just remember that it is the long appointment, so everything after that should be fairly short and sweet in comparison. My drive is about 40 minutes, so I somewhat feel the pain of your travel time. The one good thing about your hubby driving you is that you will have some nice time without all the distractions of being at home. How exciting to have your family over from England! We will send you all the good vibes and mojo that you will be feeling great while they are here.
MFK- Good for you on the “convenience" if you can really call any of this such a thing, of having a short time from beginning to end! I have just started doing Wordl a bit- haven't had time to do it too often yet, but it is really fun when I have had the chance to play.
Star2017- The wardrobe has already been a struggle for me, too! I am treated 40 mins from home, and yesterday, my husband happened to have a business dinner I was attending with him and it was in the same city as my treatment. I had to completely plan my dinner attire around what would be easiest to undress and redress into. I also had a lymphedema therapy appointment (preventative) that day, so it was a x2 wardrobe change. Today was a hoodie and joggers! No shame. Lol. Glad all went smoothly.
I had my second treatment today; however, I had a bit of a surprise when I woke up this morning to a tomato red breast! Keep in mind that I am rocking the Betty Boop look on one side due to the TE, so it really kind of looked like a 🍅 stuck to my chest. Not sure what is going on, as the techs really don't know what to think. No sign of infection and I have been applying the Mometasone for several days and have had no reaction to it elsewhere, so doubtful that's it. I suspect it is the bolus (wet towel applied to concentrate the radiation to the skin, since I had a skin and nipple sparing mastectomy), but I have requested to see my RO for a quick check in tomorrow. I'm terrified of compromising the TE or having to interrupt treatment. It does seem to have calmed a bit tonight. Who knows what I'll wake up to in the morning, though. I have to admit that I had one of those just roller-coaster of emotions days- from full resolve and determination to anger to simply feeling overwhelmed. I guess it goes with the territory, but I'm not a fan.
Hope everyone's Friday treatment goes well and we can all enjoy a barbecue-free couple of days.
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Hi Everyone,
I think I'm overlapping from January into February for radiation. I went last week and had my initial consultation and simulation. I'm to have 16 rounds of radiation and4 bursts to my scar. I even got my tattoos done. Big baby, but the one in the middle of my chest hurt and wouldn't stop bleeding. The nurse asked me if I was on blood thinners. I'm not, lol. I won't be able to start until the first week of February as my Radiation Oncologist is going on vacation, but I'm anxious to get it started. I have a tentative family trip planned for the second week of March and want to be able to go. I haven't seen two of my cousins who I'm very close to since 2019.
Anyway, thanks for the thread and sharing your experiences. It really does help and make a huge difference for those coming after!
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I’m halfway through - 15/30! My skin is still holding up too.
My job is letting me work from home until I finish radiation. It will be weird to go back to the office full time after nearly 2 years at least partially remote.
Good luck to everyone
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Hi all, Well today will be my last radiation treatment, #16. I started on 1/3. I have just a very little redness on my skin under my breast and near my breastbone that started on treatment #13, slightly itchy, but very little visible reaction. The extra warmth and slight swelling were very tolerable. So this went well for me. I have used no creams at all. I wonder if my office will try to call me back in after I am completed TXLorelei. I too have been working from home for almost 2 years due to covid and cancer. Welcome KotchAJ and I hope you get done in time for your family vacation. Wow Jen2957 that's quite some reaction you got! I hope your team can figure out why it happened. How is your treatment going Star2017? mfk if your treatment goes like mine, you may never see significant reaction to the radiation. I hope that's true for you.
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Oh my gosh, Blue! I am so ridiculously excited for you! Coincidentally, as I was typing this, I was waiting for my rads- a lovely lady had her last treatment today and rang the radiation bell! I felt like it was for you as well! Congratulations!!!
KotchAJ- your situation sounds similar to mine: RO vacation delayed treatment start date, which is then potentially affecting my ability to attend a planned trip. I hope you can get all yours squeezed in and will be free to attend yours! Mermaid was having similar travel annoyances as well. Cancer is such a pain in the…well, EVERYTHING!
TXLorelei- Halfway point!!!! Fantastic that your skin is holding up AND you’re able to work from home during all this.
My initial tomato red boob has completely faded back to normal- I guess it just wanted to make its objections known up front! Lol. Hopefully this mometasone will keep everything in check.
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Hello everyone - well, nothing much to report here. 10/15 complete and still no issues. Here's hoping that oldladyblue is correct and it continues that way!
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oldladyblue -- thanks for asking! I had treatment #4 today. All going well. 9 more to go. I'm applying aloe and aquaphor occasionally.
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Thanks everyone for the wonderful welcome! It sure does help having a group that is going through the exact same thing or something extremely close as this can feel sometimes like it is such a solitary journey. I'm anxious to get started. Not just for the trip I've hopefully got coming up, but right after this my oncologist says I can get my port out! At first I balked, but it was an easy surgery so if I need to have it put in again, I can. UGH. I hate that I just automatically think that. Hopefully NOT.
Anyway, thank you all for sharing.
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What a week! After two years of being ultra careful, my husband has COVID. He’s double vaxxed and boosted, but also he teaches high school so I guess it was inevitable. I’ve basically locked him in the master bedroom and the kids and I leave food in the hall for him periodically.
And of course this is my first week of rads. 2/20 down!
I feel like jerk, but I’m definitely upset that I expected I’d be the one being taken care of right now, not the one doing the care-taking. :
Thinking of all of you out there, sending what good vibes I have left your way!
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Hey everyone! I just started rads on Tuesday, and if your on the weekly Zoom meeting, that why I missed our last call! I have Triple Negative so I was originally was going to go to a renowned RO who specializes in TNBC located 1.5 hours away at Moffitt. Unfortunately the 3+ hour round trip daily for a ten minute treatment was crazy, especially because trying to keep my job is my top priority (unfortunately). So that was prohibitive, and I ended up finding a local RadOnc only about 15 mins away instead. The team treating me seems really nice, however they are not nearly as thorough.
For example, I though I was starting Monday after my mapping, but when I got there the were like "nope, today we just line you up on the machine again and check out our calculations and mapping again" .....umm OK?? Whatever. After reading some of your posts I feel like I'm missing some key info. On the other hand, after having 20 rounds of chemo and then surgery, part of me just feels like I don't even care and just want to get it over with at this point. It seems like the lesser of all the evils.
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Hi Sunbunny - I can tell you that my first visit was the mapping using the CT and the second session was the simulation using the TrueBeam machine itself. The notes in my file say "[Patient] came in today to verify radiation treatment parameters. The patient was placed in the treatment position which was verified according to the prior treatment plan. Gantry angles and rotation clearance were checked. Images to verify isocenter were taken, reviewed and approved prior to the first treatment being delivered. Approved films are located in the Images section of Aria." It's just a form with a checkmark. The first time I received the radiation was the second day in the Trubeam room.
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Sunbunny, it sounds like you had what my facility called a “dry run". In my case, on my scheduled dry run day, they called to say their machine was offline, so I had both the dry run and first treatment the following day.
These machines must be finicky because one of the two was down again today. This meant that I had to wait around an hour for them to squeeze me in. Hope it's back up tomorrow.
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