Anyone getting ready to start Radiation in Fall 2016?
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Oh I hope I am offered the breathing opportunity. I'm so worried about the boosts and where the tumour was removed from being so close to my heart. Like Sabrina said, I can't believe my first tattoo will be polka dots haha. I have always had an irrational fear of getting a tattoo and now I don't even have a choice.
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Serenity, I'm doing the breath holding too, but mine works differently. Mine has a snorkel type thing that I put in my mouth and a clip on my nose, when I hold my breath it doesn't allow me to breathe. I have a button in my hand that I hold down, if I can't hold my breath any longer I let go of the button, I breathe and the treatment stops.
I was supposed to start today, unfortunately there something is up with my "plan", the RO called it a "glitch"...no idea what that means, I'll hopefully start tomorrow.
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chelle44 - Definitely ask about breath holding. I have a strong family history of heart disease (and none of cancer), so I'm glad to do it. Your fear of tattoos is not at all irrational because ...Needles! Still can't look during blood draws. This will be my first tattoo. When I was young (long ago), I considered it, but I read an article about the possibility of inks getting contaminated. My MIL recently got a tattoo. Once that happens, it's no longer cool!
LifeAloft - Hope your treatments start tomorrow. I'm practicing my breath holds. Once the range is set, I need to hold my breath about same amount each time.
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Breath holds? I have not heard of that.
My rads will be to the right breast so the RO said we will not be near the heart anyway. I don't even know what to worry about. All of this is too new to me. I do have a family history of heart disease. And I have a history of lung problems. Perhaps it's not an issue in my case though?
I'm not really thrilled about the tattoo part. I had just decided not to have one, and now don't have a choice. And it's not even a cool one. I admit I have been looking at the tattoos that make surgery look more normal, since I don't think I'll have any reconstruction and the nipple was removed. But I don't think tattoos would help cosmetically in my case.
I wonder if the dots can be turned into something cooler.
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Seraphima, the breath holding stuff is just for us getting radiation on the left side to try to protect the heart.
Serenity, I'm taking part in a study at my hospital that checks the effects on the heart. They did a bunch of cardiac tests before, then I'll have them again in the middle and at the end of rads. It's a full day of testing, but it makes me feel a little better that they are keeping an eye on things.
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So I had my simulation this morning. Took about 40 minutes. It is a bit uncomfortable having to lay there with hands above head for 40 minutes. My left shoulder was not happy by the time I left and had no feeling in my hands/fingers. If you're modest...well, you're going to be unhappy with this portion of the treatment. I couldn't care less at this point! So many have seen me half naked since I was diagnosed, that it doesn't even phase me. They kept trying to cover me up for a few seconds here and there and I told them not to bother. I did have to get 6 tattoos - one on each breast, one in my cleavage, and the rest on my stomach. Some hurt quite a bit and others I barely even felt. I also had to do a breathing test because they're radiating my left side. The good news is that it is just breast radiation not lymphnodes, too. Before chemo, the PET scan showed cancer in my lymphnodes, so I'm happy that I got out of radiating that area. I go back next week for my dry run. Wish it could happen faster.
Sabrina
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Seraphima, I'm considering getting the dots turned into little stars when I'm done. Kinda like my own personal constellation. I never wanted tattoos before but if they're going to be obvious, might as well make them into something I'll prefer. We shall see....
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I met with my new RO Monday and waiting approval from my insurance. I live overseas, and she suggested the RapidArc radiation. 16 rads with 8 boosts. Has anyone had these or heard of them? I have DCIS, stage 0, age 49. Lumpectomy in the US. Mine is left side and she did mention the holding the breath as to protect the heart. I really liked my doctor as she has studied in New York and Ohio.
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Hi. I had my simulation on Monday an received 3 tattoos. I went in for my first treatment this afternoon and they marked me then and added 6 more tattoos. 40 minutes with my arms over my head was torture for my left arm. I have arthritis in that shoulder already and today was really painful. The techs say that the rest of the treatments will be much shorter. My cancer was on the left side. I asked my RO about protecting my heart and lungs, and he never mentioned anything about a breathing test or holding my breath. Should I ask the techs about it tomorrow (I'm not scheduled to see the RO until next Wednesday)? One treatment down, 32 more to go! Best wishes to all.
Joyce
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Hey SerenitySTAT - I'm on day 3 of my radiation and am doing the breathing. They didn't mention a certain range of movement I had to hit, but I was told to 'take a deeper breath' today. There is a thing they place on my stomach, and they tell me to breath in and hold my breath. Longest is btw 20 and 30 secs. They said machine will stop if I don't hold my breath but so far so good.
I got tattoos but they are so tiny - they literally pricked a needle in to my skin after putting on some ink- very low tech and they just look like freckles.
JPD1711 - certainly no harm in asking the techs if they are familiar with the breath holding - I thought it was pretty standard for left side treatment but I may be wrong.
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JPD1711 - As josieg said, it doesn't hurt to ask.
josieg - Seems like we're using the same breath holding technique, except I can see the sensor results through the goggles. Have you been able to hold your breath for the entire time?
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I finally had my first treatment this morning after a few days delay. One down, many more to do, but happy to get started.
This is what my breath holding apparatus looks like.
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Hi, I'm done with radiation and I must say, the MD, NP, and all the technitions were among the nicest people I have ever met. As I am an extreme introvert, I do not like to be the center of attention and have not even figured out how to tell my family and best friend. These people made me feel completely comfortable. What I want to share with you is to immediately check out getting PREVENTIVE lymphadema Physical Therapy. It turns out it is covered by my insurance and maybe yours. It includes not only massaging the lymph channels (even before any evidence of lymphadema) but also the scar tissue that was beginning to tighten like a belt beneath my boobs that I was just taking for granted. This was offered by the center where I got my rads. I wouldn't have tried it if I hadn't seen a flyer offering a free session because I didn't really understand what it was or that it applied in my case. I'm so glad I did
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I think so but you should check with your doc. If you had 4 nodes removed, there has been some disruption in the lymph drainage system. That would probably be more important than any radiation to the area. I am about as far as anyone can get from being an expert but my understanding is that after nodes are removed it is not really possible to reconnect or arrange a bypass channel but that the body may or may not heal in such a way that the lymph can find a way to flow smoothly as before - hence the build up or sluggish movement of the lymph fluid in the arm. I was told that I would not likely have a problem (one node removed) but no assurances beyond that. When I started rads, the nurse handed me a "map" of the area to receive radiation so that I would be sure to cover the entire area with lanolin or cream. It was actually a big square shape covering more area than actual breast tissue.
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Great advice Sara! I am going to check in with seeing the lymphedema specialist asap before I start RADS. I want to use every precaution and it would be nice to learn the massages, etc. in case I feel any swelling. I also want to be measured before RADS to be able to tell a difference if something happens.
s1d1c1u1 It is my understanding that any kind of trauma to the arm/axillary after node removal can cause lymphedema (trauma being an IV, blood taken, etc. although there are exceptions in that some people are not affected). If your insurance will cover it or it is an option otherwise, I would say it does not hurt to see a specialist for prevention.
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LifeAloft I have radiation machine envy!! Yours looks a heck of a lot more modern than mine, and I don't have any fancy apparatus for breathing. And SerenitySTAT - no goggles or sensorresults for me! I'm at Stanford and thought they'd be a little more high tech. I have been able to hold my breath - I find counting to myself in my head helps - I know that by about 30 I'll be able to breath out.
Thanks for the advice on physical therapy Sara536 - I just got my RO to refer me to a PT since I am still a bit sore from my surgery, but will talk to them about preventative lymphadema PT as they are specialists in lymphadema.
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My re-excision was just three weeks ago. I have pain every time I bend over to pick something up, garden, etc. I'm concerned that I'm starting rads too soon, even though my surgeon and RO said I'm healing really well. They looked at my incision, and while it does look good, I'm not fly healed on the inside. I'm going to ask the nurse about it tomorrow during my dry run.
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Josieg, your machine envy statement cracked me up. I was actually a little afraid of it, I have a bit of a not being able to breathe phobia. But it really helps, not sure that I could hold my breath for that long without it.
None of my docs have really mentioned lymphedema (3 nodes removed). I guess that's something for me to ask about.
LoveMyVizsla, we seem to be following each other on these boards, similar diagnosis and time frames, good luck to you!
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LifeAloft, thank you for the info.
Myraknits - that's a cool idea. Maybe I'll turn mine into flowers or something.
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Heading to Seattle for my virtual dry run, after I walk my dog. My husband is out of town, so I'm going by myself. I'm going to record what the nurse tells me, as far as skin maintenance so I don't forget anything.
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Saw the RO and surgeon today. RO made an appt in a week to do set upvisit. Surgeon wants to see me in a week and a half to monitor healing and said it will be 2-3 weeks before I can start. I'm not sure if they are on the same page. The RO has not seen the surgery yet, and it's written as a lumpectomy which I just found I had actually a partial mastectomy with a much larger incision and removal of tissue.
I asked the RO about referral for a lymphedema PT. He says since I don't have it, he can't refer me, it's not a big risk, and there is nothing that can be done to prevent it. I'm not sure that I'm happy about that.
I also went to Target, thinking there was a cami mentioned that was very soft, but after standing there for almost an hour looking in the forums and googling it, I can't find the recommendation. By then I was getting tired and wanted to come home. I thought someone mentioned Gildan, but I can't find it.
I did wake up today feeling better than I have in three months now. Even with only 4 hours' sleep. Thankful for that.
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Maybe you can get a referral from your surgeon or find a PT and ask who refers to them. My center thinks it's important enough to offer a series of 12 free lymphedema exercise classes. I did need a referral from the PT to attend the class but it certainly didn't require full-blown lymphadema- only a perceptable difference from one arm to the other (measured at several places along the arm and fingers. Lymphadema can develop gradually or maybe not at all. Maybe the RO doesn't like the word "prevent" but both massage and exercise get the fluids moving and the sooner the better. I have the feeling that doctors don't always appreciate the work done by the lesserlings.
P.S. Try "Coobies" for a soft bra/camie with no hooks or snaps. Available at Amazon and some stores. (not expensive) These are hard to get into over your head....you have to step into them and pull them up from the bottom. I didn't figure that out for myself - I had help from someone who's been there. Coobies have pockets with removable pads. Pads can be doubled. I found softer ones from my swimsuit and sold seperately. I use 2 on one side, 1 on the other. Gee isn't it nice this is anonomous
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Seraphima my RO referred me to PT coz I said I was still sore under my arm from surgery (which was in mid July). As Sara536 says - maybe your Breast surgeon will refer you.
I had treatment 5/21 today. I work full time & was finding it inconvenient to try & slather lotion on twice a day at work, then finally figured out yesterday that I should just put the lotion on when I'm getting changed after my treatment - can't believe I didn't think of that before! Looking forward to a 3 day weekend without radiation!
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Thank you both, Sara and Josieg,
I just saw the surgeon today, but I will see him again before rads start. I will try asking him. I will also look for a PT and try calling them. I don't like that I feel blocked in this. And I have pain after surgery in several areas inside. It might be cording too, but if so it is at least improving.
But the RO just looked at my hands, said if didn't have it. He said there were exercises I could do, so I asked him if there was any way I could learn about them. That was when he said I'd have to wait until I got it and it wasn't preventable.
I've been massaging myself to deal with the swelling, pain, and decreased range of motion. It's getting better. I have no idea if through any of my efforts or just time.
If I can't manage to get in, or my program won't pay for it unless I get it - is there a way to learn about exercises or massage without the PT and at least try to prevent problems?
Oh, and I'll look into the Coobies, thank you.
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I bet there are YouTube videos about it.
My nurse said to moisturizer at least twice a day. She gave me calendula cream and and aloe gel. I mentioned miaderm, and she gave me some samples. She said to use a mild moisturizing soap to clean your skin. She stressed the importance of staying active and getting some exercise. She mentioned walking, gentle yoga, or even swimming as long as you rinse off the chemicals afterward. She said no deodorant on the after side, or at least one without aluminum. And no shaving.
I can take a photo and post the paperwork they gave me if anyone wants to read it. The best new was that parking is free during rads. That will save us $120.
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I am SO hoping to get to swim before the season ends. Not healed enough yet. I'm hoping to get started on some kind of routine for early morning exercise, just in case the rads end up causing fatigue. Fatigue is a big problem for me anyway (maybe thyroid, working on it) so I'm not overly optimistic.
I already use an aluminum free deodorant. (My Mom begged me to switch years ago because of breast cancer and I did - got it anyway! Maybe I could have been using anti-perspirant all those years anyway!?) And normally a mild natural soap that moisturizers, though I've been using an antibacterial instead since just before surgery (doctor's suggestion).
It's good that you can save $120 on parking! I'm glad to know I won't have a daily co-pay. But just gas to drive to daily appts (in another city) is going to add up. I may look into transport, which IS covered by my program ... though not sure if they will drive me that far. I'm sure it would be a lot cheaper for them if they'd partially subsidize my gas, but I seriously doubt that's possible.
I'd appreciate seeing a photo of any helpful paperwork.
And I'll check YouTube for videos. Just remembered an old friend of mine who went through breast cancer a few years ago, and she wears lymphedema sleeves. We haven't talked much (weird, but she seemed a little put off by me askng, and she was such an advocate for mammograms I thought she'd be good to talk to). But anyway, I'll contact her again. Maybe she was just busy then. Or maybe I was over sensitive. A number of friends have backed off and said nothing after I told them I had been diagnosed.
Thanks.
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I will post those pages when I get home. From what I've read, you're not supposed to wear a lymphedema sleeve unless it's been prescribed. They fit them to you specifically.
I got most of the green marker off of my skin.
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Thanks!
Ah, and what I meant is that - because she has worn a sleeve, she must have had lymphedema. So she probably has some perspective about it and knows some medical providers.
Sometimes I don't explain myself well.
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Okay, here is what they gave me. Keep in mind that your center may have different ways of doing things and different recommendations.
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