September 2010 Rads
As I move on to the next phase in my treatment, I thought it would be good to have a forum for those of us who are starting rads next month. It is only a week away! I was so grateful for my chemo group, the support and friendship that I recieved really helped me get through it. I am hoping that a rads group will do the same. This is place where we can discuss treatment regimens, dealing with side effects, and blow off some steam, should we need to.
I will be starting on Sept. 7, and will be receiving 16 treatments in total. I had my planning session last Thursday, and it was uneventful. Hopefully the treatments will be the same.
Looking forward to connecting with some September Sisters!
Comments
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dutchgirl6-thanks for starting this forum
I completed chemo on August 18 and had my rads planning session the same day. It was pretty uneventful. The two tattoos are really small and are not really noticeable. For some reason I thought they were going to bother me-again just fear of the unknown.
I will have simulations on Aug 31 and Sept 1 and my 16 treatments will start on Sept 2. I am a little nervous about the side effects on my skin, but will take it day by day and hope for the best.
Good luck to all of you September rads sisters.
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Hey there, dutchgirl! I'm glad to see you started the forum. I just saw your message on the chemo board and thought I'd look to see if it was up yet. Hi rcca: nice to meet you!
I had my simulation last Wednesday and go in for a verification this Thursday, when I'll also get my official plan. The rad onc originally said it would be 25 treatments, and I hope to start soon. I'll get my schedule on Thursday.
The simulation was very quick and easy, so I have high hopes that the actual zaps will go well. Now if I can just figure out the bloody hospital gown! It's still a little hard for me to reach behind myself (BMX in Feb.), so it's hard to handle those ties. At least I was wearing knit pants, so my rear wasn't hanging out. Especially since my rad onc and the tech were both male. But the more I think about it, practically everybody at the med center has already seen me half-nekkid at this point.
Besides the treatments and side effects themselves, I think the other big thing for me will be issues around going back to work after six months on leave.
Karen
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I think I'm going to be part of the September 2010 radiation group, as much as I am in denial about it. I just had small lumpectomy last week and still enjoying that part being over (except for rash from tape), and finding out the margins were clear. I'll get actual lab results next week, but it was one small DCIS, intermediate grade. I am 14 months shy of being 45 years old and therefore do not qualify for 5-day mammosite treatment.
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Well, our September group is starting to grow. That's great. I haven't had any simulation, and nobody mentioned it to me when I was in for my planning session last week. Maybe it is time to make a phone call or two just to clarify things.
rcca, they're certainly not wasting any time getting your treatment rolling, are they? That's good, I have found that one of the most difficult thing about this process has been the waiting. My own diagnosis was in December last year, and it's been a long 8 months.
Karen, good to see you. I'm sure that we will have more of the chemo group joining this forum. I hear you about those hospital gowns. I thought that I had mine on perfectly, then when I went into the CT room, I had to put it on the other way. The techs were all very good about it, they turned around to give me some privacy, then they proceeded to expose my boob for all to see. Too funny.
CELinVa, I hope that your tape rash goes away before your rads begin. I understand about the whole denial thing, sometimes I still can't believe that this is happening to me. I hope that you get a good path report and you can start your rads soon. The sooner things get started, the sooner they will be finished.
Have a good day everyone.
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dutchgirl6- so glad you started this Rad Sept 2010 forum. I found the chemo and surgery boards extremely supportive and informative. I finished 6 months of neo adjuvant chemo on July 9 and had surgery July 30th. Even though I had a complete pathological response to the neo adjuvant chemo (no cancer cell found in tissues removed) I will be having 33 sessions of radiation. Tomorrow I will go thru the simulator and get my tattoos. Another step along this journey. Since I will be going out of town labor day weekend, my rad therapy won't start until the week of September 13th. My doc prescribed xclair cream to help with the "burning". Insurance does not cover this cream and it is pretty pricey. Has anyone else been prescribed a cream?
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nkrun: Congrats on the neoadjuvant therapies doing such a great job. I didn't get any prescriptions for cream, but the nurse did recommend a few types. She said the rad onc had seen patients get good results with calendula cream, and using that would be a one-step process instead of two (it would replace having to do both a "healing gel" like aloe then a moisturizer). I guess it's hard to find this cream, but Whole Foods does have it. I'll post about how it works for me.
I have very fair and sensitive skin, so burning is one of my concerns. And this part of my body hasn't seen sunlight since I was a baby. I'm going to try to be very good about using the cream three times a day like the nurse recommends. CELinVA, I know what you mean about the tape--every time I've had tape it bothers my skin, especially when pulling it off. One of my chemo nurses gave me some adhesive remover pads (like the little alcohol swabs) that did wonders when I had to remove post-blood test tape. It probably wouldn't help with a rash, though.
dutchgirl6, it seems like every radiation center does it differently. My first appointment was with the rad onc to go over my case and talk about whether rads were even recommended. Then the next time (a few days later) was what they call a simulation. They put you in a machine that's like the radiation machine you'll get later, but it's just for measuring and, in my case, doing a CT scan. Then between that appointment last week and this week's, my rad onc goes over my case with some of the rest of the team to come up with my official plan--doses, placement, etc. When I go in on Thursday for what they call verification, they'll make sure my tattoos are where they need to be for best placement and go over everything with me. I'm not sure if I'll have more X-rays or CTs or anything. Then I'll get a start date, hopefully within a few days.
I say, the sooner I get going, the sooner I'll be done. My birthday is at the end of October, so I'd really like to be done by then.
Karen
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I start Rads on August 30th for 21 treatments. I have Lubriderm and have started to use it now. I also picked up some unscented , chlorine free and alochol free baby wipes to use in place of deoderant. I find this forum great. Thanks, really nice to feel I have support.
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Malady, welcome. You are the first to start, so you can give us all an idea of what to expect. I was also told to start moisturizing a couple of weeks before starting, by a friend who went through this about a year ago. Good idea also about the baby wipes, I would never have thought of that.
Caltex, that is exactly what happened at my planning session. I had the CT, and got the tattoos, so I guess that I'm all set. Now I am just waiting for Sept. 7 so we can get this ball rolling.
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Hi everyone! Count me in the September rads group!
My story is similar to nkrun's: Dx December 16th; 6 months of neoadjuvant chemo (Jan-June), bilat July 14th. My path report was also NED (No Evidence of Disease, although in my previous life NED meant No Expiration Date. I figure both apply!)
I'm going to a rads 'training session' tomorrow, and the CT scan/tattooing on Friday. I'm wondering about the tats, though, and how precise it can be if I still have swelling that is going down. Oh well, one of my questions for tomorrow! They told me rads would be after the long week-end in September, but no specific date yet.
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Well count me in as a September! I completed my chemo in April, then had a BMX in June.....will this cancer treatment ever end?? I was told I would not have to have rads but oncologist changed her mind....UGH!
I had my simulation and tatooing done yesterday and will start rads on Sept 8. Will have 36 treatments. I'm dreading it and am worried because I have tissue expanders in that have not been completely filled.
Thanks for starting this thread. Maybe it will help me have a better attitude!
Have to get a positive one by the time I start. -
Just want to say welcome to Dee2010 and jsmiley60.
Dee, you must have been thrilled to see NED on your path report, I'm sure that it must have been a relief after going through chemo, and now you know that it did what it was supposed to do. nkrun, it must have been the same for you.
Jeanne, there is a discussion board called "Radiation with Tissue Expanders" on the Radiation forum, with a lot of postings, I'm sure that someone there can help you with your questions. I hope that you can find some positive vibes from the members here, too.
My friend recommended a moisturizer called Glaxal Base. It was recommended to her by the rad techs. She started using it 3 times a day about a week before her treatment, and she never had any issues with peeling. Apparently it is available over the counter, and comes in both cream and lotion form. I think that I will also invest in an aloe plant, just in case. It is actually one of the few green things that I don't manage to kill, and comes in handy around the house.
Malady, did you have rads with your first dx?
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I too have been in denial but had my "Initial Simulation" yesterday so it's becoming more real. I was CT'ed, tatooed, and given a schedule. I don't really know what simulation is because it was just a CT and I don't think there is going to be a verification. When I got home I looked at the dates and it starts September 1 through Sept 3, with a 3 day weekend to follow. Does that make sense to anyone??? I put in a call to try to change it to Sept 7 (my birthday) starting date. I figure if I miss a date I want it to be my choice, not theres.
As for creams, they suggested Aloe gel, Aquaphor, and UDDERly SMOOth.
Good luck to all of you!!!
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Alotte: You're skipping a date because of the Labor Day weekend. I will be, too. I don't think one day would make a difference, but they'll probably be willing to postpone your start date if you prefer.
I've used Aquaphor (very good for hands, but it's greasy, so I only do it at night when I can wear gloves) and Udderly Smooth (very good, and not greasy, so I used it on my arms after surgery; I ran out, so I've been using other stuff, but I would get it again. I haven't been as good about moisturizing my arms lately, but I should get back to it.I tried the calendula cream today.
I went in today for my verification appointment (checking my tattoos and doing more measuring and marking me up with a Sharpie). Turns out it was my first treatment day as well. All the measuring took a while, but the actual rads just took a few minutes. So it's 1 down, 24 to go. My last will be on Sept. 30.
On the upside, I did better with the hospital gown today
Karen
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HI, I finished my rads on august 19th. I have not worn a bra since rads started. So when I go I wear a Tshirt. I don't put a gown on. I go into the room, take my Tshirt off and get on the table. They don't care and I didn't have to mess with the gown. Also, in my center you can take the gown home with you and wash it (and soften it) if you like. Use that gown the whole time.
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You probably will think I am crazy but I did not go for any treatment for the left breast which was triple negative, it is a long story. Anyway, I have three years in now and still doing okay. This time for the right breast which is estrogen positive, I decided to have radiation as there were precancerous cells in the margins. My Oncologist said it would reduce the change of recurrence from 50% to 10-15% so here I am. I am not taking tamoxifin or anything else though.
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Caltex_cati:I just didn't think it made sense to start before the three day weekend. I called and they said it was a mistake which the doctor would have caught. Now I'm starting on Sept 8. They mentioned being marked with sharpies so I guess it will be verification and rads like you had.They said that I'll have an x-ray every week so the doctor can make sure they're hitting the right places. Is that what everyone else is having??
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I went yesterday for my CT and simulation, and asked about how they reassess if the swelling goes down. I am still very swollen from my July 14 BM(x). The home care nurses keep saying the drains came out too soon (I was still draining between 150-200 mL per day), but the surgeon's office insisted -- they couldn't be in more than 7 days (he was on vacation). My stitches also stayed in for nearly a month. No one (and we consulted the surgeon on call at the hospital twice, and went to the ER once) would touch it in my surgeon's absence. Soooo, drains out too soon, stitches in way longer than they could have been -- argh!
Anyway, I'm still swollen (some people say they have 'squirrel ears' under their arms -- mine are C-cups!), and the techie called in my onco, who came right away. He said we'd have to wait at least another two weeks for the CT simulation, and that I should go back to my surgeon asap. I'll be seeing him on Monday morning, but I don't know what they expect to happen at this point.
I'm just venting at this point, I guess... thanks for listening!
PS - re: skipping days. At our hospital we go to an info session before doing rads (or chemo), and they mentioned we could expect to have to skip at least one day because they regularly shut down for one day to check and adjust the machines. The skipping is no problem.
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DEE: Hey on the swelling I had some of that too on the left breast and my PS called it a sernoma or cernoma, I think. He stuck a syringe in there and sucked out 60 cc's of fluid....it went away after that. Maybe they need to do that with you. Just what you need........more waiting and wondering! Hang in there!
Some of the women on the August thread say they use lotion before the rads and during and my doctor said not to use lotion and if I start to get irritated skin, they will give me something to use. I think it makes sense to use lotion ahead of time to keep the skin moist, but I can't do it now anyway because they put tape over my tatoos so can't really put lotion on them. Ugh!
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Alotte, that makes sense. I guess it didn't occur to me that three days off would be a big deal when we have two days off in a row every week, but it might matter more that it would have been at the very beginning of your treatment. I'll have had two days plus a full week done before the long weekend.
Dee2010: sorry to hear about the issues you had. Since I had chemo between surgery and rads, I haven't had the same swelling issues you had by this time. I had to wait 5-6 weeks after surgery to start chemo, and then the rad onc said he recommended 4-5 weeks after chemo to start rads. I did have a seroma on the left side after my BMX; they took some fluid out, but I didn't see much of a difference. It was in my left "squirrel ear"--I've been calling them dog ears, but it must be the same thing. Since I didn't have reconstruction at the time of the bmx, they're really noticeable, and I have to admit I hate them. The surgeon warned me, but I had no idea what they'd really look like. Like you say, these would be presentable breasts, if only they were in the front
jsmiley60: I was told to use either calendula cream (which I chose) or a healing gel like aloe followed by a moisturizer. My plan is to take my cream with me and apply it when I'm getting dressed after treatment, and I'll plan the other two times depending on when my appointment is. It makes sense to me, too, that some kind of moisturizer would help, so I'm glad they told me I could do it. The rad onc said I probably wouldn't show signs of burning until the second or third week, so I'm hoping the cream will prevent that completely. We'll see.
Karen
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jsmiley and caltex - thanks for the info re: seroma. I've done a bit of research on the forum, and have found some other related messages. I now have more specific questions for the surgeon when I see him tomorrow morning. By the way, he did try to take some fluid out in early August, and it didn't work
. He seemed then to just want to let it go for a few months to re-absorb, but the rads onco wants to go ahead with the radiation therapy. He's known me for a couple of years (has treated me for thyroid cancer as well). I wish they would just agree! -
Hi everyone. Thanks to dutchgirl for starting this forum - and nice to see some of my friends from the April chemo group.
I go for my simulation tomorrow - CT, tattoos, and they make a form of my body for me to lay in everytime I go so I'm positioned the same way, etc. Then I have an appointment for scans on Sept. 8 - not sure what that means but maybe it's what some of you have mentioned regarding making sure the tattoos are right. I start my actual first rads session on September 14 (it's a Tuesday b/c I'll be out of town for a long weekend prior). I am scheduled for 33 treatments.
One stupid question that I never asked at the office - we have 5 treatments a week, right? No Saturdays I'm hoping?
Sara
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Hi Everyone and thanks Dutchgirl6 for starting the thread and nice to "see" you and my April chemo buddies here. Saralmom, I was told only 5 days week - no weekends.
I start Rads this Thursday, Sept 2 and then get a three day weekend off due to the Labour day holiday. I hear there's machine maintenance one day a month as well so I will be finished about Friday October 1 after 21 sessions.
I've been told to use Glaxol base (I think it's a Canadian thing) and I also plan on use my Aloe plant which I've been nursing along since chemo started. I was wondering about wearing a bra during the treatments...does anyone know if this is not advised? I cannot imagine going bra-less.
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shygal, I asked the nurse about wearing my prostheses, and she said it's OK as long as the bra isn't too tight and is not an underwire. She said if the band digs in, I could put some fabric or something under it. We'll see how it feels if I start having sensitivity or burning. Around the house, I usually don't wear any forms, and I have some very lightweight microbead foobs for casual times, but I have regular prostheses I'll wear when I go back to work. They're more natural looking but are heavier, so I hope they don't press on my skin too much.
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Alotte, a belated welcome. My rad onc didn't say anything to me about weekly xrays, just that he would be seeing me on a weekly basis to see how things were going. I'm glad that you were able to change your start date, it must have given you a feeling of relief that you don't have to worry about the three day break, and you can also celebrate your birthday before you get started.
Sara and Shygal, welcome to the forum, it's great to see familiar names and faces. It kind of reminds me of going back to school and wondering which of last year's classmates will be with you this year.
Karen, how is it going so far? I'm glad that you got the gown situation sorted out, one less complication for you.
I got some GlaxalBase lotion, and have started using it. I have one very soft boob, I think that I should start using it on both sides, just for the sake of symmetry. In fact, it is such nice stuff that I may start using it all over. You're right, Shygal, I think it is a Canadian thing, but I'm sure that there are pharmacies in the US that carry it too.
Have a good week everyone.
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Dutchgirl - 16 treatments. That is all I had, plus my radiation oncologist made me stay two more days and did four boost treatments. But, are you having Canadian radiation? Not too many people in the United States know about that but my radiation oncologist did. I thought I was coming down from Alaska.....to Seattle Wash.....for just five days of radiation but when they did a cat scan they found the tumor was too close to the surface so too near nerves for the heavy radiation that five days would be so she gave me the still shorter 16 days. Hope yours goes very well. Mine did. Only 10 or 15 minutes in treatment. They spend some time dragging you back and forth on the table to get you in the right spot but then the radiation doesn't take long. I did get very fatigued and when I got home I started peeling under my arm and on my breast. But all has cleared up now. Radiation is easy.
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NKrun - I just finished up radiation on Aug 11th. At the hospital they gave me something called aquaphor but you may be able to buy it over the counter. Also my radiation oncologist suggested calenula cream and I bought that and it did nicely. But then the doctor prescribed something called Prutect and it is wonderful. It is generic so a little cheaper. In fact with my insurance I got it for just $10.00. I am still using it even though I am done. My skin did begin to peel under my arm and on my breast when I got home but my doctor here prescribed silver sulfadiatine and it was just what I needed to put on that tender skin and it healed up. So, there is help out there for you. And they had me put cornstarch on my breast. That helped alot. Good luck.
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Hi Sisters,
Please add me in too! Found out I don't need chemo last Friday and I will be going to get my CT on Sept 7th.
When I first met with my Rad. Onc, he said that I will do the 33 rad dosage. My oncotype score is 15, so I am not sure why he is not prescribing the Canadian protocol. Was it ever a choice given to you ladies?
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maranatha-Thanks for the tip. I will stock up on aquaphor, calendula and will ask rad onc about the prutect. Do you know if you can wear prutect before rad treatment?
I plan on working during my rad treatment and realize that wearing a proper bra maynot be possible. Since I'm still rather large busted (full C) even after a partial mas, I cannot go braless at work. Any suggestions on comfortable boulder holders??
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NKRun - You cannot have any cream or anything on your breast when you go in for radiation . My radiation was at 1:30 each day so I just showered and didn't put anything on until I was back at the hotel after the treatment. Also you cannot use a washcloth on that breast for the whole time. You have to shower in a lukewarm shower, no hot water, and just use your hand to soap up that breast and then just pat dry, no rubbing the towel over the breast. And you have to use a very mild soap, like Ivory. They also had me wear a hanky under my breast inside my bra.
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I'm not sure where I belong as I had my chemo Jan-June, LMX July 8 and was to start rads in August so I'm on a that thread too. But here I am in a delay already. Got 4 treatments in and developed a terrible neck/chest burn. Not where I'm getting the radiation so he told me to take 4 days off and come back and he would check me on the table for the calibration and mapping.
Well I'm just having a hard time getting these rads started. The day after my simulation I was supposed to start, I got a rash on my neck/chest area, not even really where I'm supposed to be getting radiation. Had to suspend for 3 days, go on Prednisone for 9 days and that cleared up and I started on Monday. 4 txs later - by Thursday after tx my skin was so warm/pink and by Fri. morning I had a flaming red burnie itchie rash on my neck under my jaw bone on the rad side. Went early and showed it to the doctor. He said it's not even in the area that they are radiating, it's above my collarbone on my neck and a couple other places around to my back. Burns like crazy. topped rads again for 4 days and gave me a radiation dermatitis lotion (persc. Xclair) He has no idea what this is and said before I'm treated again he wants to check me on the table lined up. What is this???? At this rate I'll be doing rads till November. Anyone else having these problems? We're wondering if it's related to chemo which I finished June 3. Any advice or insights welcomed. I sure hope they know what this is, the rads are my insurance policy against reoccurenc as I am triple negative.
I bought some soft flannel fabric and I cut that up and wash and dry the surgery area and underarm with that. My center recommends Aquafor (made by Eucerin) Eucerin, Soothe and Cool and Aloe Vera Gel. Nothing 2 hours before tx and I wash my breast area 2 hours before.
Good luck to all...............Hello again to Nkrun!
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