Radiation December 2018
Comments
-
I'm doing on my stomach, for my right side. Starting Wednesday...
0 -
So I have a question..... I had my planning CT where they put me on a pad that vacuumed around me to keep its shape. They said this is what will ensure I am in the same position each time. They then put 3 sharpie marker 'x's, one on each side below my ribs and one on my upper abd. Was this my simulation and planning? I hear everyone talking about going in for their simulation. I called today to ask when I started and they said the 6th, and I asked if thats the first session she said yes I will talk to the RO for about 10 min before and then I will get my first treatment. I also asked the nurse if they go over the plan with me and she said typically not but she can ask the RO if he would. I guess I am feeling like I don't have a full understanding on what to expect as far as impact on surrounding structures. The RO told me 1/2 of my thyroid would be in the field but the nurse then told me it would only get minimal radiation. He also said part of my upper back would get radiation and I was unable to clarify if that is because it goes through me or there is something they are targeting. My RO has a very odd bedside manner and it is hard to follow what he says sometimes, that is why I called his nurse navigator.
0 -
Hi Dani -- My planning was similar, in that they took multiple scans, measurements, put stickers/marks on 3 different spots (each side mid rib and midline cleavage. So I'm guessing what you're describing was yours. I was supposed to have a "mold" made to keep me in the same spot as well, however after they did the CTs, they decided it was not needed.
I think, from what I'm hearing you say, there is a great deal of confusion going on and that doesn't lend itself to feeling very secure and safe going forward with a new treatment ahead. I think it would definitely be a benefit to you (both mentally and physically) to have someone sit down with you before your first session to explain everything. If it were me, I'd insist on it. I'm one of those people that NEED to know beforehand. I know, for me, it was very helpful and reassuring to have my RO go over everything with me beforehand.
Like:
What supplements that you're taking now cannot be taken during RADs? (many antioxidants with "free radical" functions are not allowed as they can lower the effectiveness of the treatments - for me I was told to stop Vit C, Fish Oils, Vit E, Reishi Mushroom, and aspirin)
What creams/gels will you be given and how often to use them? (I was given Calendula and Miaderm, plus Aquaphor and AloeVesta....told to apply 2xdaily a week before treatment started and 3xd or more during RADs)
How often will you see your RO? (I saw mine weekly.)
Will you be set up with a baseline Physical Therapy appt or sent to PT after RADs finishes for Cancer Rehab?
How often will there be additional scan/x-rays? (I had a new set each week to check on things and readjust if needed)
How many sessions and boosts will you be getting?
Are you receiving Gated RADs or is that not necessary? (After looking at my CTs, they said for me it was)
If you are receiving Gated, can the RO draw a diagram or explain to you how the fields of RADs will affect the nearby tissues/organs (such as lungs, ribs, thyroid, heart)?
This is the diagram my RO gave me....maybe you could ask your RO if this will be similar for you?
Like you, I was also concerned about my Thryoid. I already have Hypothroidism, so the idea of damaging it further with RADs was scary. Due to the location of my tumor bed (2 o'clock L UOQ) she assured me since we were not radiating the sub-clavical nodes that my Thyroid would not be affected at all.
Are you getting RADs in the clavicle area or in the armpit/breast? (might be good for your peace of mind to clear that up)
Sorry this got so long, but I hope something here helps.
Let us know how things go ok? I sure hope the Nurse Navigator can give you some clarification and set your mind at ease. IMO even though they do this every day, we (fingers crossed) only do this once, and it's scary and life-changing. It seems some in the medical field can lose sight of this. Hang in there, in any case. We're here.
0 -
Spoinie, Thank you! You hit the nail on the head. I do feel a great deal of confusion which definitely lowers my confidence. They are sending me to PT for measurements. I am getting chest wall, axillary, subclavicular, and part of the intramammary chain nodes. You brought up some great questions I am going to email to the nurse navigator. Maybe I am just asking the wrong questions or posing them the wrong way.
It just feels so frustrating because up until this point all of my providers were patient and always took the time to make sure I was informed. They were always wonderful with my list of questions. And to be honest on some level I feel a little hesitant since this is the hospital I work at to be viewed a difficult patient. I know that shouldn’t be a factor but I just really feel defeated by this process and I haven’t even started tx.. thank you so much for your help
0 -
Hi Dani,
You have every right to ask questions. Can you contact anybody by email or phone with some of them? Maybe make a written list and bring it to your next appointment?
Keep asking until you feel comfortable with what they are going to do. It's your body and your health.
0 -
I'm finally down to single digits, yay! Four regular and five boosts to go. The first few days were the hardest mentally, especially since I got switched from 22 to 33 at the last minute and I was angry and frustrated going in. And some weeks it feels that Friday will never come. But it hasn't been dreadful. Yet.
I get x-rayed every week before seeing the radiologist, in case there are any internal changes that would affect treatment.
0 -
Tigerlily and Salamandra - Just my personal opinion, but I think you are both getting to do radiation on your stomach because your treatment centers are more progressive and up-to-date on / willing to try the latest protocols. Which is a GOOD thing for you both! From what I've read, radiation on the stomach for breast cancer is supposed to better protect the lungs. It's just newer data and technology so not everyone has adopted it yet but who knows, maybe that will be the norm in 10 years!
Check this out which should be a relief to you both: https://www.everydayhealth.com/columns/health-answ...
egregarious - knock knock knock. I have a wood dining table and am knocking for you and me, as I am 23 of 30 sessions in and skin is tanned but good! Knock knock.
Dani444 and other ladies who will find this helpful - my radiologist was really transparent about what is getting radiated for me when I expressed concerns about my lungs because I have asthma. So he showed me the actual X-rays that show exactly where the radiation goes and I asked if I could take pictures of it with my cell phone and he said that's fine. So here are the pics! This is on my right breast and the part with the lines over it is what is "gated" like Spoonie said which means that those parts are NOT receiving radiation, which is good. So I felt more re-assured after seeing that, plus you can see that there is no radiation to my back at all. I hope this helps! Maybe see if they can just show you your specific charts (like mine) too.
Oh and instructions for me were aloe vera, Miaderm or Aquaphor for the lotions (I've been using aloe vera and Miaderm), and no Vitamin C, E or A but Vitamin D, Fish Oil and a Multi Vitamin was fine. Weird because it's different from Spoonie's doc saying no Fish Oil! Who knows why different doctors have different recommendations.
AliceBastable - congrats on single digits! I'm there too. I would be equally frustrated if I came in thinking I was almost done and was told I have an additional 10 sessions so I can totally understand your frustration. Here's to the final countdown!
Anyways here are the charts of my radiation treatment (the reason my underarm gets it too is because there was cancer in 2 sentinel nodes, so that's unique for me, treating the ancillary nodes too just in case):
And since I'm posting pics, here is my little pup who is well known in the November thread and comes with me everyday to treatments... introducing Domino!
0 -
pebbles, that is awesome that you got all that information!! I hope I can have him show me my plan. I would have less anxiety going through this if I could fully understand it!
And little smiling Domino made my day!!
0 -
I just finished my first treatment about three hours ago. Not much to say about it. I felt pretty well prepared after the two set-up appointments. I feel a bit sunburned, but that has to be in my imagination after just one treatment, doesn’t it?
0 -
Purple cat, I was slightly burned after my first treatment.
0 -
Dani444 - so glad to hear that (and the smiling Domino!) was helpful! Have you have your meeting yet with your radiologist? I see no reason why they can't show you the X-ray paths etc. that they showed me. Especially if it's to provide reassurance, which in my case was also needed because I have asthma and needed to understand more about how the rays were hitting my lungs (if at all).
PurpleCat - have you started with the lotions like Miaderm or 100% aloe vera gel? If you feel sunburned already, then I might suggest you start lotioning up. For me, I haven't had any side effects (24 our of 30 sessions in now!) BUT I use aloe vera morning and night and started a ritual of applying Miaderm immediately after my radiation treatment. Literally right after, when I go to change back into my normal clothes. Who knows whether that's been a reason why I haven't had side effects but doesn't hurt.
The radiation therapists actually looked at me today and commented on my skin holding up really well. So there's that!
0 -
Wishing you the best PurpleCat. I think no matter how much we lotion, cream, hydrate, and eat well, we still can't change our genetics. Alas. I loved my Miaderm, AloeVesta, Aquophor, and Calendula creams as they gave me so much relief. I had even started applying them 2 weeks prior to treatment to prepare and moisturize in advance. I followed everything to a T that my team asked of me and more, yet I was a unique "zebra" and had quite the range of SEs from Day One and am still battling them, and being dxed with new SEs 5 weeks out from finishing my RADs journey. Hang in there. I hope they go fast for you and everyone else. Hugs and healing.
0 -
Just checking in......session #4 today and so far no skin issues at all. Seroma and all the bruising that went with draining the Damn thing seems to be resolving. Just some aching where it was, so that's not so bad.
Only other thing I have noticed is the fatigue, which sucks a lot. Maybe it's worse because I work overnight shifts and my sleep isn't great to begin with, but now I can sleep 12 hours straight if I don't have to be up for anything! Thankfully I don't have to drive myself every day, daughter takes me one day a week and so does my husband. It's 85 miles one way.....
0 -
Pebbles so happy that your skin is behaving and being kind during RADs! How awesome!!!
I hope that for everyone on this journey. We all have enough as it is.
(Oh, and about the Fish Oil, my RO had said that studies show it has a antioxidant effect, and I take a very high dose of them for my other chronic illnesses, so she asked me to hold them during RADs, to get the most out of. aka better safe than sorry.)
0 -
Thanks for the advice on moisturizing, all. My RO advises aloe and aquaphor, so I'm stocked up and have been using it the past few days. Hoping the soreness so early is just my imagination. The other factor for me is that the left breast has been fibrocystic for a long time and has always periodically gotten pretty painful, so that may be coming into play too.
Sigh. I've been trying hard to keep a positive attitude about this and have mostly been successful, to the point that those around me have commented on it, but honestly? I DON'T WANT TO DO THIS.
0 -
Hey PurpleCat,
Sign me up for the Don't Want to Do This club. I feel like a wuss because of being sick of it after only three treatments.
SO TIRED. By about three or four in the afternoon I hit the wall and just don't want to do anything.Yesterday my rad was at 5:30, last one of the day. There was nobody else in the waiting room and no staff around. Kind of spooky. Much time passed. Finally I went down the hall and tried to ask nicely if maybe they had forgotten me - no, just running behind.
This too shall pass...
0 -
Well, today was my second session much quicker than the first one. So far so good. My RO actually had me order Oronine H Ointment - 100 grams on Amazon and prescribed Triamcinolone Acetonide Cream and she recommends using green tea. Right after my treatments, before getting dressed (I have a little thermos) with warm green tea and I dabb the green tea bag on the area and then apply the Triamcinolone. I apply the Oronine cream before going to bed. I guess we'll see how that works over the next few weeks. No issues so far though.
Thanks everyone for posting your experiences, it really does help prepare.
0 -
Pebbles, thank you so much for sharing all of that!
I was told any unscented lotion. I'm bad at making decisions so I googled from Target and the MSK radiation site said try to avoid lanolin. Which is in aquaphor and eucerin, so, confusing! Anyway, I ended up getting a cerave ointment and a dove fragrance free lotion (couldn't narrow it down further, I hate these endless small decisions). They also prescribed me a steroid cream. Now I can't remember which to do before and which to do after though. It's written down somewhere but my apartment is a mess. I've had very low cleaning motivation!
I'm meeting an integrative nurse practitioner today at the center so I'll ask her, and also share back if she says anything else that seems relevant.
0 -
Four down, twelve to go. We are getting accustomed to the routine, what to expect, how to find the changing room once treatment is over - a lot of twists and turns down the halls.
I am so very tired. Every day about three o'clock I hit the wall and don't want to do anything but lie down. So far my skin is still in pretty good shape, not discolored or rough. Going through tubes of moisturizer.
Tomorrow radiation will be at 7am. We actually requested this as being better than 5:30pm.0 -
Purplecat and egregious, I want to join the I DO NOT WANT TO DO THIS club too. I am tired of it and I haven't even started. I have hit an emotional wall today and have cried more than I have through this whole process . It really is a long story that I won't bore you with but evidently you cannot get your planning images on a CD for another provider to look at. I ended up in tears after the director of the cancer center called me to basically reprimand me for asking. Anyway you are right this too shall pass.
Salamandra, That is interesting about the aquaphor my plastic surgeon wants me to use it at least once a day through rads, Just curious too if anyone has said anything to you guys about shaving? Does it even grow under there if you are getting axillary rads? Also I am not sure anyone wants to work with me without deodorant, Yikes. But they told me no deodorant. I am just picturing my poor coworkers and patients at hour 11 of my 12 hour shift. I really need to clarify if that is a hard no on it. what have you all been told?
0 -
Hi Dani -- I hear ya on the emotional wall bit. I hit that wall the first week and the last week. I was just emotionally overwhelmed and couldn't handle a single freakin thing. It was just too much. Hang in there....like they say, "This too shall pass...". Gentle supportive hugs!
Oh, and about the armpit, I had axillary as well. During RADs there was still hair growing, but it slowed down tremendously. By the end, there was no hair growing at all. Now, even though I finished on Halloween, there is still no hair growing. My RO said it may never come back, it may come back in a few years, or it may just be that I get a few "stragglers" here and there month to month...only time will tell. During RADs I was asked not to shave, unless I used an electric razor. The reasoning behind it was to not create any additional irritation and also not to introduce infection to the site if possible.
As for deodorant, it was a hard NO from my RO in the treated armpit. Tom's Deodorant was ok as it's more natural. It seems the deodorant is not forbidden because of previously held theories that the metals in them affect the dosage of RADs, but is really due to the various chemicals possibly causing reactions to the skin and further irritation.
Here is an article about this being the case: https://www.breastcancer.org/research-news/using-antiperspirants-during-radiation
0 -
Hi Dani, why cant you get your planning images on a CD? I've gotten other radiological images on CD before. I'm sorry that happened. I've been super emotional lately too. (Instead of hugs, flipping someone of for you!
Sorry couldn't find the "flipping someone off for you emoji) Also no shaving because if you get a cut, your chances of developing lymphoedema is higher. Salamandra, I DON'T EITHER. I was feeling emotional today because the techs leave me too uncovered and I hate it. I hate the ugly hospital gown. I'm exhausted as well partly because I'm on Anastrazole and not sleeping well which is depleting the very small well of reserves that I had left.
0 -
I'm retired and go home after my early morning sessions, so the no deodorant rule isn't a problem, at least this time of the year. I use it if I go out on weekends and haven't had a problem after 26 zap days.
I also got seriously pissy the first few sessions. My treatment plan turned out to be longer than the original estimate, and for some reason that got me to the verge of tears (or a tantrum) after staying cool as a cucumber through three surgeries in three months. I'm hanging in there as I approach the end, but it's SOOOO tedious. And I am now, according to the radiologist I saw today (subbing for the regular one who is on vacation), a member of the Pink Tribe. It hadn't occurred to me to look UNDER my boob stump -gravity won that battle years ago. I thought the discomfort down the side, below the armpit, was from the node nerve reactivating. Looks like it's also skin irritations. I switched back to my post-surgery sports bra today and it really helps. Layered on aloe gel, then Aquaphor (not giving it up since my dermatologists also swear by it), then a white men's cotton undershirt ("wife-beater," hate that term), then the bra. Can't wait until I'm back to my 3-minute complete clothes change I've always done.
0 -
Spoonie, thanks for the info on the hair growth, I will look at it as the bright side of this, one less pit to shave!! I am going to ask about the Tom's natural deodorant when I go in tomorrow. Maybe I can get an ok to wear it just while I work.
DWisely, I absolutely laughed out loud at the "flipping someone off emoji" The director was being defiant for whatever reason, and when things settle I may speak to the person above her about this. I could not believe they way she would choose to speak to a patient that was starting treatment the next day. Also, not sure if you are open to this but I have started back with taking ultra cell cbd oil. My RO is aware but I feel it is very helpful for sleep. It is expensive but when my sleep issues started back up this last couple weeks I put out the money for it!
Alice, I hope your skin irritation clears up soon! Glad you found a bra that is working for you. I bought some aloe as well but have not decided when I am to use what. I just no they said nothing 2 hours prior to treatment. But I did order some "my girls" cream except I must have clicked the wrong thing because I got a jar of "my guys" cream.
. I laughed so flipping hard. It is the same formula the company said so I am keeping it for the laugh value. So if you need me I will be slathering myself in cream intended for a mans junk (sorry, not appropriate but I am feeling a bit snarky after this day)We got this ladies, We can do it!
0 -
Hi everyone - just checking in on my end. 25 of the main whole breast and axillary node radiation treatments done today! I have 5 more to go (for a grand total of 30, oh my) - the final ones are the 'boost' treatments so more local to the tumor area, and I meet with the radiologist tomorrow to check on how my skin has been holding up. Apparently sometimes they let you take a break before the final boosts if it looks like you need it.
For me, I was hoping to skate through with no side effects, but this morning I discovered a blister on the underside of my breast, probably because I've still been wearing underwire bras since I'd been doing so well. Oh well. A reminder I guess that my skin is more sensitive even if I don't visually see it or feel it, so I'm keeping up with the aloe vera gel and Miaderm! It's annoying but not so bad in the grander scheme of things.
ghostie13 - I was thinking of you because I also had a seroma after the lumpectomy, and my breast still felt hard and I was worried about whether they really got the tumor out even though they said they did with clean margins, and the surgeon and oncologist and radiologist all reassured me that the hardness was normal post-surgery and the seroma would go away. Well, an odd piece of (maybe) good news is that, after 25 sessions of radiation, that harder area I had is soft and nice now and no longer feels like a leftover lump. I'm going to ask the radiologist about it tomorrow, but I think it's a good thing? AND the dent I had in the scar area has actually smoothed out. It's not perfect, but it's actually better than it was. This is a pleasant surprise. I did read some threads and research that said sometimes the breast gets perkier after radiation, so you know what, I'll take it! Anyways just wanted to share that maybe there is something good too with all these treatments we have to go through. My husband and I were accepting that I would just be lopsided post-surgery, but now post-radiation it actually seems to be evening out... here's hoping...
purplecat / egregarious / dani444 - there's a light at the end of the tunnel, promise. It's a huge pain to go in everyday (especially those of us with the longer commutes - for me, it's about an hour each way), but the one positive with that is that you can check off your schedule quickly, and before you know it, you're a quarter of the way through, then halfway through, then done! It will be even faster for you if you don't have the full 30 sessions like me.
Salamandra - you're welcome! And weird on Aquaphor, good finding! I had bought Aquaphor but I haven't used it at all, I was trying to keep it simple and the aloe vera gel and Miaderm seem to be working for me so I've stuck with just those two. I bought both on Amazon - the aloe vera is Fruit of the Earth 100% pure aloe vera gel and honestly I use that the most. Morning, night, and afternoons/evenings after treatment if I feel like slathering on. The Miaderm I use just the once, immediately after the radiation treatment, when I go change. Part of why is because it's expensive too, so I'm using it somewhat sparingly. The other reason is because I was going to start using it more as I got further into treatment but it made me itch more, so I decided to keep my regimen as is.
DeeBB - that's so interesting about the green tea! I might try that!
Dani444 - I can't believe they reprimanded you for asking about images on CD! They should allow that, and it's your right to ask! OMG steaming up on your behalf right now - at Kaiser, they give you any images on CD you want and as you saw, my radialogist let me take pics of everything on my cell phone. I mean this is YOUR information about YOUR body, you had a complete right to ask for it and I think other centers or hospitals would have allowed this. I would have had a good cry over that too. And I think it's a good idea you raise it up - clearly, you have feedback from us that getting a CD of your images absolutely happens and is allowed at other places.
Dwisely - I agree on the hospital gown, I remember when I went in to surgery and there I was, in the hospital gown and wheelchair and I looked at my husband and said, "Well, if it wasn't real before, it feels real now." But now that I'm going through radiation treatments, I have my "little things" to feel like me and not a patient. It's small, but I usually wear a scarf around my neck, and when I change into the hospital gown, I keep the scarf on (or put a jacket over if I'm colder) and walk over to the treatment room with my scarf and/or jacket still on over the hospital gown. Plus it helps to keep from getting cold. Also I am wheeling Domino (in her little carrier) along, so I just feel a little more like "me" and it's made all this more bearable. It's the little things!
Alicebastab - with my blister discovery, I too am switching to my post-surgery sports bra! It's on now. As Spoonie likes to say - le sigh!
Spoonie - I agree with Dani, one less armpit to shave! Hoping it goes well for you with the PT and so admire that you are being a warrior through all of this.
Anyways, I already posted pics of Domino and Tucker today in the November radiation thread, so instead, I thought today's paw update will be this one of our entire paw family. Domino you all know well (the white pom), Tucker is the 'big boy' (border collie mix) and Kit Kat is the sweet little one (black pom) who crossed the rainbow bridge earlier this year, but is still with us and forever part of our paw family. Anyways, this picture is well representative of what we are all going through with radiation! Stay strong ladies and hugs and healing to all!
0 -
Dwisely --> I hated my gown too! It made me feel like a "patient" and not like myself. The first few times I put it on I just cried and was depressed. So one of my girlfriends made me my very own special kitty gown, so that they could be "there" for me in the room.
All they did was get this over sized sleeping shirt at Wal-mart. Cut off about 3 inches from the bottom...it was way too long. Cut open the back. Fold in those cut sides about 1/4 inch and them hem them down with "iron on" hem material. Then just add some velcro down each side. Easy peasy! My team loved my kitty horoscope power!
I felt more like me during treatment and it helped tons.I'm pretty sure most places are fine if you bring your own, I believe it just has to open in the back so you can get your treatment as usual. Maybe you can convert one of your own shirts and bring some of your Dwisely power into the room with ya?
0 -
Omg, so many people to answer! I love this group. I had been feeling like an over sensitive, incapable of dealing person, but this does get overwhelming.
Dani, so open to CBD. This is my second primary cancer in 3 years and I live in a state that just made medical ok. Still flipping people off for you.
Alice, my armpit is my worst area too.
Pebbles, ouch...
Spoonie, I wish I'd thought of that! I love your shirt. I got upset today because I asked one of the techs to cover my belly. She said no bc they need to use the tattoo on my belly to line everything up. Ummmmm I don't have a tattoo on my belly... It made me feel so bad!
Dart
0 -
The hospital where I get my radiation has nice deep rose cotton robes, with a good coverage wrap front and kind of kimono elbow or below sleeves. The techs untie the front once I'm in position, refresh the marks and get me lined up, then cover me back up before firing up the machine. I can't imagine how it would work with a back-opening garment.
0 -
I untie it, they uncover me position me, cover my right breast, leave the room. I have different techs almost every day, some better than others, but it is a deeply dehumanizing affair and I'll be glad to be done. On Tuesdays, I walk through part of the facility to go meet with my RO after tx. For as much as they charge my insurance, this should be better. I think cancer patients should be pampered during this already traumatic time.
0 -
Alice - those gowns and robes sound heavenly! My center just had the standard itchy hospital gowns that tie in the back and white robes. I think nice, comfy, soothing robes/gowns should be standard for cancer patients....we already lose so much. It'd be nice to keep a bit of our humanity and self in the process.
Dwiseley -- omg! Now I'm flipping off people for you! Uggh! I can't believe that tech was so rude to you like that. (smh!!!) You should be able to get a blanket and have your belly covered if it's been covered before. I had to have at least half of mine exposed, which wasn't fun but it was quick at least. I think the way both of our centers sound a bit the same, as I had similar processing and different techs, again some better tthan others. They also untied the gown, folded it down below my navel, and then positioned me. I never had any marks placed on me after the first week, after that they just lined me up based on images I believe. I'm glad you're almost done and you can move past this sooner than later.
0
