Anyone getting ready to start Radiation in Fall 2016?
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DaraB, congrats on finishing chemo!!
I also had to remove my wig for the sim, but I've worn it for each treatment.
I had some nausea the first week, increasing my water intake really helped. I also have a metallic taste in my mouth similar to when I had chemo, just a nuisance, I'm sure it will go away.
3 boots to go and then I'm done, Thursday can't come fast enough. Skin is doing ok, it's a weird color, no pain. I am peeling in a couple spots, more like a sunburn type peel that doesn't hurt and I have a very small "raw" spot under my breast. Overall doing great!!
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Question, does everyone lay on the back for rads or are some on their stomach? My rads will be on the left side, and I've read quite a bit about holding breath to move heart out of way and some being on stomach to move breast out of the way. I've been told they won't radiate my armpit as my nodes were all clear. And Frill, I know this is a sensitive subject, but was it your RO who told you that orgasms are now gone? I've never heard of that before from anyone. Thanks for all the info everyone...
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Dara, Mine is left side too, I don't have my appt yet, but am wondering about the same..
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I'm a "leftie", on my back with breath holding, my RO showed me the scans and it's not hitting my heart at all.
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Dara and Judy, most likely you will be on your stomach with the affected breast hanging down. It really depends on where your bc was located.
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Michelle, when i saw my RO, and was going to have my sim... they told me I would probably be on my back with the mold
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I'm a leftie and on my back with breath holding, too. My nodes were clear, but the radiated section reaches to about halfway up my arm pit. Not purposely, it's just in the way of the whole breast area.
Sabrina
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#15 done today. Tomorrow CT scan, meet with RO, and I'll find out how many boosts I'll have.
My treatments are on my left side, on back, with breath holding (no snorkel). Multiple X-rays are taken before each treatment. My skin is a little reddish, but not painful. Armpit is darker.At the first treatment I asked the techs to show me where to put lotion so I didn't miss anything. Haven't had nausea. I just feel tired, but not as tired as during chemo. The first week was mentally hard, but now I've gotten used to it.
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I am a leftie too. On my back. I wear the snokle to insure I am taking a deep enough breath to push my heart to the back. #7 was today. Arm pit is a hot mess. If not looking better on Thursday I will skip Friday treatment. Good thing I work from home. He said to try no shirt and keep arm up and out from the body. Also to use a cool fan on the area.Thank goodness for curtains in my office or the neighbors would get quite a show! LOL.
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I have my sim tomorrow and start rads on the 21st.. 3-4 weeks I should be done by Thanksgiving...
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That is great news Judy!!
Finally, after 4 treatments, I am in the swing of things. I have my timing down to a science and know what is expected of me. Met with my RO today and he showed me exactly how we are treating the breast and tumor area. No other breast, lung or heart involvement. He put some of my fears to rest.
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B"H
I also have already had five treatments.... I think for anyone awaiting the RADS to notice how the hard part is just the unknown before starting, and that once things get into motion you see how your body is reacting and handle it pretty easily....
so anyone who has not started yet - really know it is not as challenging or frightening at all as it may seem now!
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Hi everyone,
I've been reading so much on these boards since my diagnosis but haven't posted until now. I was diagnosed on August 9 with DCIS but after my lumpectomy on September 6, they diagnosed me with DCIS with Microinvastion (1mm). Because the microinvastion was so small, they could not test this for HER, but the DCIS was HER+. I am ER- and PR-. My DCIS are was about 2.5cm I believe (gr 3, necrosis, etc.). I have been struggling to decide between mastectomy and radiation. I believe my recurrence with radiation is 10% versus 1% with mastectomy. I never wanted radiation and felt my gut was telling me mastectomy because of the make-up of my DCIS (being more aggressive). At this point, my radiation simulation is scheduled for this Friday. I have seen plastic surgeons and they all are very up front on the complications of mastectomy. I am extremely anxious and my coping skills are not very good these days. I just hope I can get through the radiation okay and not have a panic attack during the sessions. They are able to do the 4 weeks instead of the 6 weeks. Did anyone who had 4 weeks have more side effects from the higher dose? Please advise - just looking for support with this! Thank you.
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Terri17 - If you think you'll have panic attacks, please ask for medication. I felt a little anxiety a few times in the first week. Once I understood why they were making so many adjustments, I started feeling OK. Think I felt I was doing something wrong, but I wasn't. Remember to breathe and relax your shoulders and back. I'm having about 4 weeks of radiation. On day 14 my skin started getting pink/red and a little sensitive. No peeling so far. Ask where on your body you should apply lotion. I'm a little tired, but I had chemo before rads. My appetite is back to normal after the steroids from chemo. I've had no other side effects. The techs recommended stretching throughout treatment (and after). I feel tightness everyday, and stretching/exercise helps loosen things up.
#16/~20. Treatment plan 1 was for the first 15 days. Plan 2 (smaller treatment field) is for the next 2 days. Plan 3 (even smaller treatment field based on today's CT scan) will follow. I should find out the number of days tomorrow. Skin is reddish and warm, but no peeling. Techs played Motown today. They've asked if I had a music preference, but I like figuring out what they're playing.
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I really wish I had music during the zaps. It would pass the time better.
#23 of 33 today. Tomorrow I will be in SINGLE DIGITS! Woohoo!!
I am a leftie and lay on my back. No breath holding (although I did ask him about it). He states his treatment allows for breathing. I hope so as I get 14 zaps per session. I normally get once a week x-rays.
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It's funny how different all our centers are. I get x-rays every day and there hasn't been any music playing the last few sessions :-( at least they are under five minutes, so I don't have a chance to get bored.
ayr1016 how's your skin holding up? I'm one treatment behind you and I've started to get a bit red under my arm and side of my breast.
Sabrina
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Tomorrow I will be halfway done! Woot! 14 of 28. Today my RO said he would start using a Bolus which brings the radiation close to the surface for the chest wall and skin. I did some research and apparently this is common for women who have had reconstruction after a mastectomy. They do this because the chest wall and skin are the most common sites for recurrence in women with reconstruction after mastectomy. It's supposed to be pretty hard on the skin.
Anyone else having this done?
-Keely
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I've had bolus treatments every Tuesday and Thursday, and the covered skin is no worse than other areas. Did your RO tell you it may be worse?
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Serenity, he did. He didn't say it would be awful he just wanted me to know just in case I started to see more severe damage, not to be alarmed, that it was normal. I've fared well so far and I think he was just giving me a heads up.
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Well, hopefully, the damage won't be severe.
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Terri17, The number 17 is a lucky number in my Irish family!! Please don't be scared. The first couple of times, it will feel a little weird and then your body gets used to it. I have had 5 out of 16 for the full breast, and I will have an additional 4 boosts. Just do what the technicians tell you to do, and be still. You are going to just fine. If I can do this, you can do this. If I were in your shoes, I would do the radiation first and see if they get everything they need to. Being Her2+ your MO may have you do some other treatments as well. Get a pattern down, what time do I leave for treatment, how long does it take to get there and park, etc. Get it down to a science so you spend as little time there as possible. If you have to get a mastectomy later, so be it. All of us with this diagnosis face that decision if certain things change in our breasts. You are not alone.
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Hi Terri17,
You'll be fine. I don't believe you have more chance of recurrence with lumpectomy + radiation than with mx....please check the main page of this site for information about studies. I believe rates are almost equal (in fact might have slightly better outcomes with lx+rads). Ask all your questions when you see your docs, don't be shy. Lots of experience and help here too. I've done everything else, rads is last and I have my sim appt tomorrow. Want this in the rearview!
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Frill, is he (the doc) serious? I thought you were being treated for breast cancer, not pelvic cancer. He must be joking. What one thing has to do with the other?
Why not wigs? I doesn't make sense. They are in the head not the breast. And if they let you use it on tx sessions, why not on sims since you are not radiated on sim.
I feel uncomfortable while nude especially since my mastectomy breast is not fully filled and is small and round and red. The left one is big and sagging. Not a good image. I was sewing a short gown for the rads. It is made of cotton and opens in the front and has no metal in it (closes with velcro and the velcro does not touch my skin). The other center will not let me use it because they give you gowns. I hope the new RO lets me wear it to sessions. From other persons, I have learned that they don't tattoo in this new center. However I am allergic to latex and tape and I can't keep the tags all the time so I will have itchy, red, sore skin. Won't risk myself. They will have to find a way to deal with it.
Most people I have asked tell me they are on their back. I cannot tolerate lying on my stomach. I had the experience of the MRI and the pain in the neck I had for two days (pinched nerves). So no option either.
I have lymphedema and I won't let anyone radiate my armpit. Neither my neck area will be radiated to protect my thyroid. I have read that my benefit from rad is only 4%. And on chemo, only 12 %. So more risks than benefits. But since two nodes in the clavicle area seemed active with radioactive glucose, I need to be sure that cancer won't activate near the head or the thyroid in the near future. I am ingesting sodium bicarbonate and other antioxidants as precaution.
I don't think that chemo or radiation cures the cancer, it just stop cancer from overgrowing in a 90% of patients. Since all cancers are different, why chemo agents aren't different? They just give us A+C and T, 4, 8, 16 tx sessions. What changes is the amount of the agents because they depend on person's weight. In Radiation they give us the 45-60 Gy whenever you have a lump or mx, no nodes or a bunch of them. It scare me that they give the full dose and an additional dose in boosts. Are they counting the XRs, the MRIs, the CTs, tomographies, and mammograms of the future? Those are radiation sources that add up to the full dosage already given to our bodies. I hope we don't develop another cancer because of radiation.
Last thing, I am 66, so Medicare won't cover some items such as lymphedema. I need to very cautious. The supplementary plan covers others. If I get a 12,000 thousands bill again, sorry ladies, I won't accept rad tx.
Time to sleep. Bye ladies. Check on this site tomorrow.
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It's my last day!!!! So excited!! Took the day off and have a fun day planned...my daughter is coming with me to get my final zap, then we are going to do some flying with my pilot friend (I was a student pilot when this all started), then a celebratory dinner with the family, my son may be getting engaged today so we will have two things to celebrate!!
Have a great day everyone!!!
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LifeAloft CONGRATS!!! Sounds like you guys have an amazing day planned!
Terri17 I was told the risk of occurrence with lumpectomy and rads versus mastectomy no rads was the same. It was the recovery process for mastectomy that helped me make my decision, plus my oncologist was very pro lumpectomy. Best of luck, dear. It's a tough decision. i know I went back and forth on it through 5 months of chemo (another bonus on chemo before surgery is a much longer time to decide).
3 day weekend for me due to the machine getting an upgrade tomorrow so woohoo! *happy dance* Gives my poor red boob an extra day to heal.
Sabrina
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Mariange, Medicare does cover x number of LE PT treatments, nine of the sleeves Etc. I am on Medicare also and I have yet to see any bills! I am almost done with chemo. What was your big bill for? Should I prepare myself
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Congrats LifeAloft!! I'm right behind you. One more today (just finished one) then last one tomorrow.
Terri, I was really not happy about the prospect of rads, but it hasn't been bad at all.
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LifeAloft ~ CONGRATS!!!!
Sabrina - I have a bit of pink. It feels tender if any friction goes on (wearing a bra, shirt, etc.) especially the nipple area. I have noticed that my areola/nipple area is slightly darker than the other breast. Every day I'm afraid I'm going to wake up to flaming red with open sores, but, so far so good. 9 more days of treatment.
The most curious thing is that I was told that the under arm hair on the radiated side would fall out and/or not grow. It has not fallen out but I believe it has slowed the growth (I think?). Gross as it may be, there is still hair. I will not shave it because I am doing everything I can to avoid friction or more irritation to my radiation areas. I can not wait to be able to shave it though. I have never gone this long but kept thinking it would fall out as I was told lol. It does not however have a bad smell (which thank goodness haha). Anyhow, I have one shaved underarm. I have to laugh when I think about it.
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Today is the first day. I'm trying not to freak out now because I only have one Xanax with me, but I just feel myself getting more and more wound up. However, I actually remembered to look at the hospital's integrative medicine calendar and there's a drum circle right before it starts. I'll go beat the crap out of some drums. I've always wanted to do that.
Mariangel43: The nurse wasn't joking. She made it sound like it was more a by-product of menopause, which I told her was sort of in dispute. My MO seems to think that because I had an IUD put in last summer, and I haven't had a cycle since right around then, that somehow makes me menopausal. I told him that the benefit of an IUD was little no periods. And before *that* I'd never missed a cycle. But the estradiol tests show that I am post-menopausal. As I've said before, that must make me the luckiest woman in the world. I've gone through menopause without knowing it. My body image therapist gave me the contact information for some doctors that would be able to address my concerns.
I don't think they like my scarves because I wear a shaper underneath and they want my head in the same position each day. That's a picture of me before simulation. Someone had mentioned wearing a little hat and at first I was like - I don't have those. Psht. Lol, even not at home I found a cute one that I can wear - or at least try to get away with wearing during. I'll just have to redo my scarves before I leave. I can understand their reasoning, but a little prep would have been nice, especially with me freaking out over everything about this part of treatment.
I've thought about bringing my own robe and house shoes to rads, then I can tell myself it's a laser spa treatment. >.< I imagine they are so sick of me and my complaining that I may wait on that one.
I have LE, too, and that's another thing that has me completely off the chain about this whole thing. If my MO had done the referral earlier, I could have had the bypass operation by now and probably wouldn't have had any problems. As it stands now, the PTs and I are just starting to figure out how to control the LE after about 8-9 months. I almost had a cow when I heard they would be zapping healthy lymph nodes.
LifeAloft: YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Congratulations! I feel like we've been through this whole thing just about together and now you're at the finish line. I am SO HAPPY for you!!!!!!!!
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I had 6 weeks of radiation on my left side and completed on February 29. I was on my back for every treatment with both arms over my head. I had to hold my breath several times during every treatment and that was difficult. My lymph nodes were affected so the area of radiation was from my collar bone to my waist and over to the left side. I worked part time and was very tired during radiation. There was some skin irritation and the nurses gave me ointments to use. The last week was a boost week and that was not as difficult as I didn't have to hold my breath. Much quicker too.
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