June 2020 radiation group
Is anyone else starting radiation in June? I start June 10th. I had the CT scan/mapping yesterday. It was weird. 3 people writing on me, putting stickers on, taking pictures of my boobs and hand placement, while I just laid there realizing that this is now my life. I have done pretty good throughout this journey, but yesterday got to me. I left and just cried in my car. I am sad and scared and a bit overwhelmed. I have continued to feel this way since yesterday. Anyway, I am not looking forward to radiation, but just want it over with. My radiation oncologist has me stopping Letrozole for the month of radiation. I will have 3 weeks whole breast and 1 week boosted. He is going to try to move the field over slightly to get lymph nodes since I had isolated small tumor cells in one node.
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Yes, I am! I had mapping this past Tuesday and am starting treatment this coming Tuesday June 2. Trying to be positive. Some ladies have said they actually missed rads when it was over because they missed the social aspect of seeing the same treatment team every day! Just hoping my skin holds up.
I feel you on having the people hovering over you. I didn't have a choice for the first appointment but they gave me a questionnaire where I was able to put down a preference for female techs going forward. We'll see if they honor it.
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I agree, about the hovering. I was angry the whole time of radiation. I disliked my RO she was great at avoiding answering my questions. Some people miss radiation. I didn't want it and don't miss any of that. I still see a different radiation oncologist post radiation (my request). Hate going back there
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BCat40. That is nice that you have an opportunity to request women. No such luck with me. You take what you get. In my case it is going to be at least one man every time. Yep, like you I am hoping my skin does okay. I am pale, burn easily (never tan), and have chronic hives. This should be quite interesting. Good luck to you.
redhead403. Why were you angry during radiation? Just because of having to have it, not liking your RO, or something else? How awful that your RO wouldn't answer your questions. Mine seems super smart and on top of things (i have to see him every week during radiation so he can monitor me), but he is very stern and not nearly as personable as my other drs, but that is okay.
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Count me in for June – at last! I got a COVID swab Friday (negative, yay) and have setup and mapping Monday. After all the waiting, it's like oh yeah, that other big "C".
Glad to finally be moving again!
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Hi everyone- I start radiation on 6/15. I’ll have 33 rounds. I had my mapping and simulation about 2 weeks ago. I’ll be doing the breath hold during my sessions. I found my appointment very interesting and a nice break from my usual chemo appointments. Just ticking another thing off my list on this long cancer journey. Looking forward to connecting with you all as we start radiation and make it through
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Hi ladies starting rads … informed consent means they should tell you that you have the right to refuse pictures, you have the right to refuse tattoos and I refused to have rads if there wasn't a female present (only one female tech where my rads were done). I told them that if I arrived for my appointment and she wasn't there I would walk out … they seemed to think it was perfectly acceptable to send female patients into a room with two or three men, strip you naked to the waist and allow them to touch/prod/move you without another female present. Then their "protocol" was to leave you laying naked to the waist on that table during radiation treatment. While sitting in the waiting room waiting for setup, I saw others walk into the control room knowing that live video of exposed patients were on the computer screens. They have to watch to make sure you don't move. I carried my rebellion even further by refusing to be completely uncovered. I made myself a "modesty band" out of thin t-shirt material, cutting it so the sharpie marks (no tattoos) could be seen and told my RO that I would be wearing it. The female tech pulled back the covering on the breast to be radiated for lining me up, then she covered me again. My other breast was never exposed. I am a sexual assault survivor from the 70's. I was blindsided by the terror that overwhelmed me when they explained their "protocol". The whole procedure was emotionally traumatizing but I got through it. I also have to say that the two techs who were with me for every treatment were incredibly kind. Once they knew my situation, they did everything they could to help me through it. Stand up for yourself and demand to be treated with courtesy. I know there are treatment centers that are caring and kind and I hope that will be your experience. For the ladies who aren't bothered by the exposure or think everyone should leave their modesty at the door, please do not dismiss or belittle the ones who are finding this journey particularly difficult. You never know what their story is. Good luck to all of you. The good news is that you will get through this. Blessings.
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I'm starting tomorrow, June 1st. I'm nervous since I have very dry skin. Good luck to everyone else who is starting in June.
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Rose14. I will be thinking about you. Good Luck. I am nervous too.
grandmaadams.. Thank you for sharing your story and for the words of advice.
ajminn3. They didn't tell me I would have to hold my breath or anything so I don't know if I have to do that or not. Yes, you are right, just ticking off the next thing to be done on this journey.
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cm2020- when I did my simulation they had me practice with breath hold and without to see if there was difference in where my organs would be during radiation (left side). Since my heart, lungs, diaphragm, etc moves away during breath hold and I felt comfortable doing it we decided to go with that method. I was pleased with how involved they had me in deciding what was best and most comfortable for me when I’ll be doing rads.
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Hi everyone,
I was supposed to start radiation in February. Did the whole planning/CT/tattoo appointment and was ready to start but then my Oncotype test came back and the score was higher than we hoped it would be so all my docs strongly suggested chemo first. So I just finished 4 chemo infusions every 3 weeks.
I see my Radiation Oncologist tomorrow to make sure nothing has changed since February and will start radiation on June 15th. 44 sessions with boosters.
I'm sick of cancer and hope my hair grows back soon. I'm so looking forward to getting through this and on with my life.
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ajminn3. Thank you for explaining. My cancer is right side so that may be why they didn't have me holding my breath. I am impressed with how involved they had you be, that is really nice.
kikind. I'm sorry you had to take a detour through chemo first. I'm glad it is over now and you can move to radiation and a step closer to this being over with.
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I had my first treatment this morning. Everything was fine. It took longer this time since they had to take some additional X-rays and reposition me. I’m looking forward to a shorter visit tomorrow since my right shoulder was bothering me.
I put aloe vera gel on after the treatment. 🤞🏻That my skin will hold up.
i wish everyone strength through the treatments
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4 treatments down. The mepitel film is holding up well on my breast, but it's impossible to get it to stay in the armpit area. I'm not getting directly radiated in my armpit but I know there can be some exposure. Just hope the skin there holds up. No signs of skin issues yet. Otherwise my breast is starting to feel a bit generally sore, like the soreness you would get before your period. i'm going to have to go back to wearing sports bras daily most likely. Also I started noticing a tiny bit of acid reflux, which is not something i've ever really had issues with so i'm attributing it to the rads. It just makes me nervous since the radiation is supposed to be limited to the breast, why am I having symptoms in my esophagus?
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BCat40, you might want to try CamWell cream. I’ve now done 5 treatments. Like you, I am feeling a little sore, especially later in the day. When that happens, I put a very small amount of CamWell cream on my chest and underarm. It is very soothing because it has a natural analgesic. CamWell is expensive (as others have mentioned) but for me it is really worth it. It has an herbal smell from the natural ingredients used,which isn’t terrible but some may find that annoying. For me, I can put up with the scent as long as I feel better. 🙂
My RO recommended 100% aloe vera gel and I do put that on immediately after treatment. It dries quickly and doesn’t have a strong scent so I can leave the hospital quickly and feel pretty good. I put the gel in the frig so it is cool when I use it. Maybe that would help you as well.
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I'm glad that those of you who have started are doing well thus far. That is encouraging and I hope you continue to do well.
All of the markings, and stickers covering them, are coming off, so I am not sure how simulation and first treatment will go Wednesday. That's what happens when the mapping is done 2 weeks before first treatment (my RO was out of town this past week). I hope it doesn't delay anything.
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Thanks cyathea. I can't put any cream on since I have the mepitel film covering the skin 24/7. I'm going to try ice as needed. The pain seems to be letting up a bit since I have the weekend off. I will be seeing RO again on Tuesday and see what she says.
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I had my consult with RO on June 5th and will have the mapping done tomorrow with treatment starting June 15. I was actually surprised at how anxious I was during my visit. During surgery they found a microscopic cancer cell in second sentinel lymph node so RO decided to do some additional therapy to that area since I was not put on chemo. He did not discuss side effects very much.
I'm very interested to hear all of your reactions to therapy and how you cope. I'm nervous about damage to my left lung among other side effects that you are all talking about. I knew there would be issues with my skin, and possibly fatigue but I didn't know that it could be painful. I am a flower farmer which is a physically demanding job so I am concerned how this therapy will affect my ability to work.
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magpiez2. I really hope that radiation side effects don't interfere with your ability to work. My sentinel node biopsy also had isolated tumor cells (too small to be measured so it isn't considered metastasis)....that really scares me too. All it takes is one of those little buggers getting out and all hell breaks loose. My RO wasn't sure he was going to move the field over some to my nodes. It all depends on what mapping showed, I think. He lost me a little bit there and I can't remember everything he said.
I'm nervous about radiation and how it will affect me and the damage it may do too. Honestly I am nervous about everything to do with this cancer.
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Magpiez, for left side radiation they do a breathing technique where you hold your breath and it helps move the radiation field away from your heart and lung. There have been a lot of improvements in radiation techniques such that lung damage is more rare these days. Since I am having my right side done I don't have to do the special breathing.
I mentioned my pain issue to the tech today and she said everyone has different reactions, it's hard to tell who will have what. Will report back after talking to my RO tomorrow. FWIW it's not debilitating, just uncomfortable at this point.
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I am getting radiation on my left side and will be doing the breathing technique during treatment. During my simulation I practiced breath hold and no breath hold while they scanned me and determined that there would be some benefit to the breath hold since my organs shifted and I was comfortable holding my breath for 20 seconds. My RO said radiation is so targeted these days that the risk of hitting other organs and causing substantial damage is low, although he can’t guarantee anything. I also have implants and they aren’t concerned about that much either, which surprised me
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Well I found this that says esophagitis is a common side effect of radiation to the chest area, but that it resolves fairly quickly after radiation is complete.
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BCat40, thanks for that article link. At least I can expect to be done with the sore throat in about 4-5 weeks. That’s encouraging.
I asked my technicians about this today and they confirmed that they are giving me radiation that is close to my throat (upper clavicle area) and that it was possible that some of the radiation was affecting my throat. I will ask my RO about this the next time that I see him.
Wishing everyone a good week with minimal SEs0 -
Thanks, cm2020. My RO’s response to my sore throat was classic denial that it could not be caused by the treatment. I know what I am feeling and I know that I have not picked up a cold or anything else that would cause this. To his credit he did suggest that he would watch this, but I wish doctors could learn to listen better. I understand that throat issues are not usually an issue with breast radiation, but I think doctors need to have a more open mind and ask questions. If the patient is experiencing an issue, they should use that as an opportunity to review the procedures, scans, equipment, etc. to see if, in this specific case, something should be changed.
I don’t mean to be grumpy today. I was hoping for a better response. Maybe it’s just that I am extra tired today
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cyathea. Most important.....do NOT ever feel like you have to apologize here for being grumpy! I feel like this is the one place in the world that every single person reading understands and is completely sympathetic to being every range of emotion there is. It is absolutely okay and understandable that you are grumpy. I agree with every word you said about how your dr reacted. I'm just glad that someone here knew where to look to get concrete proof that radiation is causing your sore throat. I really hope it doesn't get worse, but you keep letting your dr know it is hurting and if it does get worse make sure you let him know that too.
Lots of gentle hugs....
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Cyathea, I think that what your tech said about the throat area makes sense. Someone in another radiation thread was reporting throat issues too. It's also in the same area of the esophagus where I am having problems. My friend told me that her father got acid reflux from radiation for prostate cancer, which is in a totally separate area!
Drug companies have to report side effects from drugs even if only a small % of people get them. I wish the ROs wouldn't act like a side effect is not related just because it's not one of the most common ones.
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BCat40 you said it so well! I wish ROs were more like drug companies. 🙂
cm2020, thanks for your encouragement as well.
Has anyone felt a tight nerve burn sensation In the wristwhen they raise their arm? I was having this earlier. Fortunately, I’m able to go to physical therapy. The therapist has been wonderful. After she massages my arm, the pain that I feel in my forearm and wrist goes away. I still have some tightness under my arm, but I am amazed at what she does. The pain just disappears! Of course, with the continued radiation, the pain eventually returns, but I have to think that I would be a lot worse off if I didn’t have her help.
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Well I got the side effect denial today too. I was surprised because I do like my RO and find her pretty sympathetic, but she said the acid reflux could not be caused by the radiation because my stomach and esophagus are not in the radiation field. I told her I have never had this problem before and it only started after the radiation but she just told me to talk to my PCP.
The nurse was at least less dismissive with me.As for the pain, she said it is not typical but I have a large seroma in the surgical field so that's probably it. It must have shown up in the planning CT. I wonder if they were planning on telling me that if I didn't complain about pain?
On the positive side they have given me a completely female team per my request on the initial intake survey.
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I start today. My mapping and ct scan last week involved a panic attack due to my mask( covid). The nurse was not very nice. I got to my car and bawled. I'm hoping it goes quickly. Praying for everyone xx
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toria1212. I start today too. I'm really sorry you had a panic attack during the mapping. I panicked too because of the CT scan...I have horrible claustrophobia and between the CT scan and the mask, I lost it. They allowed me to pull the mask down during the CT scan but weren't happy about it. Like you, I got the car and cried my eyes out. I didn't come straight home either. I just needed to be alone and cry for a while so I drove around. This entire cancer diagnosis and journey just seemed to start hit while I was on the table for mapping and came on full force once I left. I have dreaded today ever since, but yet am so ready to get started so I can just get it over with. Hugs....we will get through this.
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