May 2020 Radiation
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@Callmetenacious - that is great news that someone finally stepped up to make YOU, the patient, more comfortable!! I mean, seriously - we are dealing with enough, right??
@Texasmama - thank you for your support. I just got a call this morning from my genetic counselor - I am relieved to say all 70 genes tested came back negative. This was a bright spot that I desperately needed today. I am so glad I did the testing though - you are so right - better to stay in front of it!
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Thanks for the replies. Yes, hoping to get active on short hikes soon, still feeling fatigue one week after end of rad sessions, but it seems that is to be expected. I still have the strange upper chest/lower throat irritation, and am now thinking it might be some sort of reflux condition from lying down for treatments daily for 3 wks shortly after my morning coffee...don't know, just trying to find a cause since rad-oncologist said not a usual side effect....
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Finished all the radiation finally! From third week, after I met the new technician who asked me to hold breath and breath out a bit and hold and I failed at the last moment, I was so nervous to see the technician and shivered at the table when holding bars, I kept telling her please let me breath again instead of breath out a bit but she just ignored. I finally had to ask to change the original teams even I had only 4 times left. I am glad they listened to me and the original technician let me hold short frequently and she told me they could do that if I asked in advance to hold breath several short ones instead of one long one. I was kind of pissed that she should have told me at the first time. Anyway, so relieved to finish radiation. Hate to go to treatment everyday so much
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This is so inappropriate. I didn't have those issues, had female techs. They only took a picture of my face
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Callmetenacious- I’m so glad you have been switched to another team. I hope you’re treated better by them.
LB13- Hurrah for negative results!!
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Finished radiation today!! A great relief. I am blessed to have wonderful technicians who on the most part were very kind and caring. I found it very hard to hold my breath the whole time and a few times had to stop and restart but they didn;t care, just helped me through it. My skin isn't too bad. Mostly blistered where the sun shines on my chest so have to watch that very carefully this summer. It was great to have all of you go through this with me and listen to my rants and complaints. I really hope all of you continue to do well and get through this and never face this ugly thing again. No more MD visits for one month. What will I do???
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quinnie,
I'm so happy you are finished! I hope you get to have a relaxing weekend. It's a great thing that your techs were good to you!
I had my RO appointment and mapping today. I had a panic attack when the ct scan began. I yelled for the tech/nurse-I wanted desperately to take my mask off-heart was racing, but she was not very nice. She said, "Victoria, you are just feeling anxious but look at us-we wear our masks all day long, so you can get through it too". Frankly, I WAS overwhelmed and offended by her cavalier attitude, and when I got to my car, I bawled hysterically. Have you all had to wear your masks even when you are in the treatment room alone? I am more nervous about next Wednesday(June 10) first radiation session than I was before today happened.
I feel like I am slowly crumbling. I was so positive and ok with everything, until the last couple of days...my 25 year old son(lives with me) brought me pink roses this afternoon. That was a comforting gesture.
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Toria: during the treatment they let me pull my mask down since they were not in the room. Since my CA is on the left side I had to do the breath hold which was difficult for me. A couple of times I let loose but the machine automatically shuts off and they let me get my breath to finish. It really helps to have techs and staff that are understanding. I had one tech that wasn;t so much. She seemed always in a hurry to get me out of there. Good Luck and take a deep breath and think pleasant thoughts. Easier said than done!!
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@quinnie - Congratulations on being done!! I have two more to go. My hubby and best girlfriend are coming along and we are having Prosecco in the parking lot following my last treatment!
@toria1212 You can do this!! I wore my mask the entire time. The CT scan and mapping takes much longer than your treatments will. I said two 'Our father' prayers , the machine moved, I said two more prayers and it was over. However, there is no excuse for a tech to not be kind to you - particularly during COVID - you can tell your radiation oncologist you didn't appreciate that. Sweet gesture from your son! Emotions for me have been a roller coaster - so go easy on yourself. One day I had tears rolling down my face through the whole treatment.
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quinnie - Thrilled that you got through this! Relax, enjoy yourself and recover!
toria1212 - Please talk to your nurse navigator, patient advocate, RO about the mask issue. Each treatment center is dealing with the mask issue differently. However, no technician should be bullying you when you are the patient. Check this thread for my experiences earlier this week. For what it's worth, the radiation supervisor who changed my technician team was wearing his mask with his nose uncovered. I take my mask off when I enter the treatment room because I have to do the breath hold.
My new technician team is so much more professional and still friendly. Looking forward to completing my last two sessions next week!
Question for those who will be starting hormone therapy after radiation...how long have you been advised to wait before starting your pills? My nurse practitioner and the substitute RO I saw yesterday said 4 weeks. The MO who prescribed implied that I should start right away.
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@ Callmetenacious - I am to start Tamoxifen following rads. My RO also said I could wait until I was healed from the radiation. My skin is pretty broken down at the moment. He said 'you will be on it a long time, and one month won't make a big difference'. I have a call in to my MO - because I don't even have the prescription yet. I am not sure what she will say.
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@LB13- so happy that you are almost finished! I hope your healing is swift and not too uncomfortable for you. I will be praying as well for sure!
@Callmetenacious I am happy for you as well. I only have 20 treatments/4 weeks so I really should not be complaining. I will call Monday and talk to someone about the mask. My bc was on the right side, so I am also spared of some added 'stuff'....
@quinnie Sam's Club is a mile away from the hospital, so I stopped there yesterday on way home(I am currently slowly stockpiling for NEXT winter, in case virus stuff goes crazy again) and decided that besides prayer, during my treatments, I am going to visualize and walk down the aisles of Sam's Club heehee.
Just sending warm (((hugs))) to everyone. This is so big, and so much bigger than me these days. I am really struggling, many teary episodes, and often, a desire to be locked away by myself, in my grief and worry. I am grateful to be able to come here and receive support, love and sound information. Thank you everyone! xx
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finished my 1st full week of Radiation. Treatment 7 done! Glad it’s the weekend as I could use the break. Between the daily treatments and just getting out of the house with the pandemic.
21 more treatments to go then I’ll be going on Letrozole. I see that most are going on tomoxifan. Not sure the differences but lols like a few of us will be taking something after radiation.
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Congratulations, Quinnie!! I hope your skin heals quickly
Toira- I’m sorry your tech wasn’t more compassionate. The radiation treatment is much faster than the ct scan.I had my tenth treatment today and so far my skin is doing well. Eighteen more treatments to go.
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Hello everyone. Yes I finished RADS a few days ago. Have some blistering but is where I have sun damage. The rest of my breast is just very pink and sore. My MO told me to start Letrozole 3 weeks after I finished RADS. Not really looking forward to it but will give it a try and be hopeful for little or no side effects. I can't take tamoxifen due to history of blood clots. I am a retired Occupational Therapist so know to range my shoulder as it is very tight after RADS. 12 years ago with my first round of breast cancer I developed a frozen shoulder and took 6 months to get my range back so was determined not to have that happen again. I am happy to be a 2 time breast cancer survivor. I hope I never have to go through this again but I know so many of you have had it much harder than I did.
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I finished today and rang the bell. I wasn't particularly interested in the bell but my good tech said that the staff really enjoys it. It's a big bell with a lot of vibration and I was surprised that it made be feel good. Had a great talk with my RO about the staff issue and she believes that it was unacceptable and that a man would never have been treated that way. I plan to escalate it and she is going to advise me on how to do so to make an impact.
My breast is pink and heavy feeling. I was advised to continue to use cream,use sun protection and focus on feeling good. Also to stay in my relative isolation for another four weeks. I did get her blessing to get my hair cut in mid-July - we both go to the same salon and they are following every possible precaution.
I want to highlight Quinnie's comments on shoulder mobility. I have been diligent about moving and stretching everyday and am thrilled that the RO noted that my mobility is not only unaffected but is notably better than it was when I started. For me, it's move it or lose it!
Quinnie - I was advised by the RO to wait until after my 4 week follow-up with her to start my Tamoxifen. When I saw the MO, she just said to start it after radiation. It's interesting that there's not a clear guideline on when to start hormone therapy.
Wish everyone the best!
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Congratulations on finishing! I hope you recover quickly and well. Can't wait til I'm on the other side of radiation too. ((( hugs)))
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Hi all - I finished my rads yesterday also. I am sore, raw and my underarm and 'underboob' are a mess. It is seeping and I am using prescription Silvadene cream with non-stick pads on top. However - I took the morning off from work, and my two best girlfriends and my husband went with me to the treatment and brought champagne! They let my husband come in to see me 'ring the bell' and we took a few photos - I have to say - it felt SO good to celebrate something! They gave me a printed 'certificate of merit' and I took the staff treats from a wonderful bakery in the city. Afterward - we all went to breakfast at a little BYOB diner and had champagne mimosas. My three stepchildren sent me the most beautiful bouquet of pink and red roses with pink hydrangeas. Then, last night I got my hair cut and colored and had dinner at our friend's house. We kind of made a day of it and it felt good. I mean, that is why we are going through all of the treatment, so we can celebrate and live life - as long as possible - right??
Now that the rads are over - there is a new set of fears - I saw my surgeon on Monday for my 3 month follow-up, and she said I won't have a mammogram until January. She said they wait until 6 months from finishing radiation to assess the new me. That scares me - if I could have a mammo once a month now - I think I would. I really, really just don't ever want to go through any of this again. She tried to reassure me that I am doing everything right to try to keep it away - surgery, etc - local treatment (rads), systemic treatment (tamoxifen), genetic tests were negative, low Ki-67 (5%) and only grade 2 tumor - and I KNOW all of that - but I just don't think I will ever be able to not have recurrence on my mind.
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So happy for you on finishing. I pray you boo boo heals swiftly and completely. It sounds like you are surrounded by loving, caring people. It does make quite a difference doesn't it?
I had a boob lift four years ago. One of mine struggled to heal on the underside- exactly where my tumour was. I think the weight of the breast may complicate it.
I've been far more emotional and unstable in my thoughts post surgery. Still so much bc "stuff" to accomplish. I began radiation today. I understand how you feel. There will always be a "what if" sitting in my thoughts.
Sending healing ((( hugs))) your way!
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I had an episode of anxiety during a long rads session. I called out to the techs, told them I was panicky. They told me I could leave my mask off, as they were wearing theirs. I didn't have any attacks after that one, I did wear my mask, but I think just knowing that I could take it off if needed help me.
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I had surgery March 25th, lumpectomy with sentinel node biopsy. Finished 16 radiation treatments June 4 th (6 days ago). Today, the site of the sentinel node biopsy is bruised and tender. I’m confused, that surgery was weeks ago. Or is anyone aware that this could be delayed discoloration from rads treatment?
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I finished radiation on May 29. But now the area is very sore, and I'm getting small blisters in a few spots. It's very itchy, but painful at the same time. Any ideas about what I could/should put where the blisters are to relieve pain and/or aid in healing? I had a left side mastectomy with no reconstruction, so am completely flat on the radiated side. Thanks! 😊
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ange, for itchiness your RO can prescribe cortisone cream. They may also have a topical agent they can give you for the pain. Definitely reach out to the doc for help. Call and ask to speak to nurse if you can’t get doc easily.
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I decided to 'mind over matter' about the mask and did ok. Who knows how I will feel/do tomorrow? Ugh. I feel like a wet washcloth-heavy and drained tonight.
I'm sorry your node site is hurting. My node scar is so thick and icky-but it does not hurt like my surgery site.
Hope you continue to heal well. (((hugs)))
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Congrats to all of the ladies that recently completed their radiation! So happy to hear that you are doing well. I just completed my 12th treatment out of 28. Almost half way
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Pink4meagain I was just wondering if I was the only May starter still going! I have 12 left. Won’t finish until June 30th.
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I still have 7 treatments out of 25 left. I started seeing more side effects during the third week. Right now the breast area is pink but underarm is very red. The skin is not broken yet but looks very angry. I put calendula cream several times a day and aquaphor at night. I'm using bolus. Tried to get rid of it last week but RO was insistent on continuing. She gave me a break on Friday but I don't think it makes much of a difference.
For those who finished, would be curious to hear experience during the two weeks post radiation. I've been reading that things continue to worsen. Sigh...
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Tunik: Yes, the radiation is cumulative so does get worse after radiation stops. I have been done for over a week and still have blisters where i have sun damage and pink everywhere else. I am still very tired but I often wonder if it is due to being down in the dumps after all that has happened or is it the radiation. My RO said it does cause fatigue. I continue to use aloe vera and aquaphor which seems to help my skin. I can't wear a bra yet. I bought cotton sleeveless tshirts. I wore a bra to a graduation party last night and was miserable. I didn;t want to hang loose!!!
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@quinnie, I purchased two really soft bras from Kohl's(they ship, and well, covid...) They are exceptionally comfortable. Wish I had more. I have two sports bras for tennis that are far more supportive but tight and not comfy. All this is about comfort and survival at this time, so maybe check out their website....They are a wee bit thick, and although I air dry them(use one each day, wash, switch) they take forever to dry-I'm sure you can throw them in the dryer though.
Hope your weekend is blessed! I have a 3pm with an integrative oncologist to discuss nutrition, supplements, etc(I am leaning towards not resuming my anastrozole, but I know she's going to push for it) Gathering my facts now.... xx
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I'm 6 days post-radiation (16 sessions)! I am so much calmer and happier! The nurse practitioner and my RO expressed great concern over my skin so I have been extremely diligent in continuing to apply generous coats of Mometasone (prescription steroid) at least twice a day. Some definite pink skin but not worse than it was during treatment so far. Per their advice, I've been wearing Fruit of the Loom pullover cotton sports bras and sleeping in my husband's XXL cotton undershirts. I have also been following their advice to keep my chest covered to the neck in the sun.
I did have a multi-day killer migraine (a rarity - usually manageable within a few hours) and a lot of neck/shoulder pain than began the day after my last radiation session. I think my neck was finally able to protest the ridiculous strain of the radiation positioning (turned right and looking up). Kudos to my husband for some massage that helped to relieve it. It's finally gone!
Post-radiation fatigue is a real thing. I'm really trying to embrace it with multiple short naps interspersed with bursts of activity. I've walked twice so far today and had my first nap at noon. Going to need a second one before my 5 pm Pilates session. It's a good thing that I accepted my RO's advice that I continue to self-quarantine until my 4 week visit. Otherwise I would feel pressured to be doing more.
@toria1212 - would love to hear how your integrative oncologist appointment was. I have not found one locally and am interested in nutrition/supplement/lifestyle advice which my current provider completely ignores.
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