January 2018 RADS group

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    DownNotOut, congratulations!! What a relief. And to answer your question, my .7 cm and .4 cm masses were not found on 2D - but they were on 3D. So I am a huge 3D mammogram convert.

    And welcome Skookum and kokoro. We are happy to answer questions anytime, or just listen. You got this!

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  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    Kokoro- welcome to the greatest support group I've found. If rads are the same in France as in the US, your first day may take a little longer, as they take xrays & make sure you're positioned correctly before they begin. If you have any direct questions, ask away. There are many warriors here to answer you. Best of luck tomorrow!

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  • KCH2018
    KCH2018 Member Posts: 6
    edited January 2018

    Tomorrow will be 8/30. The muscles in my legs are sore. Not debilitating - more like when you start exercising after a break. Annoying but nothing really bad. My RO says it's not due to radiation but nothing else changed in my life. Has anyone else had muscle aches? So far no bad burns from RADS.

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Kokoro, send prayers to your first radiation, believe me radiation goes fast be sure to load up your lotions after radiation, also eat plenty of protein a day will help.

    Skookum, you are more than half way through, how’s your skin doing? Mine was getting red around 17-20.


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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2018

    Welcome, Kokoro and Skookum! We're glad you've found our community, we're here to support you!

    The Mods

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  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    KCH2018- I didn't have any leg pain. I completed 16/16 on 1/18. Could it be from climbing up on the table? I know I'm reaching, but none of us had to do that before daily rads. Keep lotioning up, you're over a quarter thru!

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Welcome Kokoro and Skookum to a club none of us hoped to be in. But this is definitely a supportive group with a lot of good information and helpful ideas.

    I was thinking over the weekend about rads and BC. I think that the thing I hate the most is not the swelling, fatigue and sunburned feeling but it's the daily trip to radiation. The daily reminder of this situation, this new "club" I'm in. I am so tired and so ready to get back to life as normal as I can make it.

    I emptied and cleaned out my refrigerator and polished all my granite in the kitchen yesterday. It was weirdly refreshing to do that task and not think about BC. I think the cabinets are next.... :)

    This is my last 3 days and I am so thankful for the treatment but so thankful it is ending.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    Down, Congrats for the great news!!

    smw, I am treating Rads like the part-time job I can't resign from until the end of February. The drive is getting old, but I am thankful it will be my last major treatment. Wishing I didn't have to take the AI. My joints don't like it. Some days are better than others, but I sure feel much older than I am. ThumbsDown

    Officially 1/3 done today (11/33).

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Kim WTG! You are getting closer to the finish line!

    Smw I hate the daily trip to radiation, it took up so much time. I’m lucky the clinic is only half an hour away but still took away almost half a day.

    Skin is getting better each day so remember to lotion up.


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  • Tpralph
    Tpralph Member Posts: 487
    edited January 2018

    yay kim!  i wonder what constitutes 33 rads tx vs 25?  I'm getting 25 no boosts (that i know of).

    Day 11/25 today. Skin still holding, no change or maybe slight browning in axilla (maybe) talked to the nurse re: lotion, says it wont prevent anything but help with flaking and dryness of skin, no help in preventing skin damage. 

    i have to drive 1.25 hrs to our cancer clinic for rads daily. my treatments are mostly in am so gives me the rest of the day. I am using Wheels of Hope drivers so i don't have to do it daily myself and saves my husband from taking away from his day as well.

    heres to another fry week lol

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    I really do wonder about the number of rads. I had 28 with no boosts. Why do others get 25 or 33? I assume some of this has to do with the technology and maybe our diagnosis? From what I can tell you only get boosts if you had LX, they are targeted where the tumor was. For us ladies that had MX, I suppose you can't really target where the tumor was since all the tissue is gone.

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Kim, you've already started your AI? I don't start till about 3 weeks after rads. I've been looking over at another forum here on the one I'll be taking. It's been informative but I'm still nervous about potential side effects. This is like a never ending story. :) I'm nervous but also very positive minded, I think there is a lot to be said for a positive mind.

    Okay, I was waiting on my turn today and was complaining a little about fatigue and another lady said chemo is worse. Dang, that shut me up. Good reminder, it could be worse for me. After I left I thought, oh I should have said something empathetic or comforting. I hate it when I'm too focused on me to see what others are going through. My goal for this week is to really try harder in that area.


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  • PVM
    PVM Member Posts: 136
    edited January 2018

    Amy from what i gather from my RO its the technology as you stated, i was given 16 advanced rads i guess they accumulate the whole 30 sessions into these 16 & then i was given extra 5 boots to target where my tumor was & my nodes as i had positive nodes. I am in Canada so really don't know if its standard here or not but my RO told me that he found the shorter higher dosage works just as well as the regular dosage over 5 weeks. Found this article from NCBI that may clarify things a bit :)

    Adjuvant radiotherapy (RT) is an important part of breast cancer management but the dose and fractionation schedules used are variable. A total of 50 Gy in 25 daily fractions delivered over 5 weeks is often considered the "standard" adjuvant RT prescription. Hypofractionated regimes such as 42.5 Gy in 16 daily fractions or 40 Gy in 15 daily fractions following breast-conserving surgery have proven to be equally effective and achieve similar or better cosmetic and normal tissue outcomes for both invasive and in situ diseases and when treating the regional nodes. Hypofractionation is more convenient for patients and less costly. However, certain patients at higher risk of RT late effects may benefit from a less intense, even more extended fractionation schedule. This review describes the indications for whole breast hypofractionated adjuvant RT for patients with breast cancer following breast-conserving surgery and proposes that hypofractionation should be the new "standard" for adjuvant breast cancer RT.

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  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    After LX I had Accelerated Hypofractionated WBI (same as 33 but higher dose) 16x and no boosts. So no idea why differences either.

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    PVM, looks like that is for "breast conserving surgery" which I assume is lumpectomy? I had mastectomy with a fairly large tumor and 2 nodes. I am not sure the hypofractionation radiation is for mastectomy. Do they do it in Canada for MX?

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  • PVM
    PVM Member Posts: 136
    edited January 2018

    Ohhh Amy i am not sure at all, my BC was a bit different so i did not have an MX or a lumpectomy as mine was under my axilla. It was a large tumor though even after chemo shrunk it to 8cm. When i went for my rads consultation my RO chose the shorter higher dosage for me as he said it would do the same as the longer not so high dosage. I found an article in the BCO web site but again it is more to the ladies that have a lumpectomy. I am not sure if this would be something offered to ladies that had an MX, sorry :(


    http://www.breastcancer.org/research-news/benefits...



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  • DownNotOut
    DownNotOut Member Posts: 99
    edited January 2018

    Welcome, Skookum and kokoro! Skookum, you are more than 1/2 way finished, way to go! kokoro, how did it go today for your first rads? I hope it was easier than you thought.

    Sonia, how did you enjoy your first rads free Monday? Pretty awesome, I'm sure. How is your skin holding up today?

    Good news for me today...I am scheduled for my CT/simulation TOMORROW! I'll leave work a little early and get this ball rolling. I can't believe I'm so excited to jump in this pond with all of you, but I am! I'll let you know my plan and the rationale behind short or long/conventional course, whichever it ends up being. We have to trust our RO's plan and there are definite differences in equipment, which changes the regimen, to be sure. Paulette and others, what did you do to increase your protein and what was your grams/day goal? Did you use mainly meat/eggs/dairy? Those protein shakes look pretty convenient, but are they really a healthy choice?

    smw, I know how you feel and I'm sure you will have plenty of opportunities to show grace and caring to folks in the waiting room and elsewhere. I am very humbled when I read the Dx and treatments of ladies on this forum. I am so fortunate but sometimes we all forget.

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  • DownNotOut
    DownNotOut Member Posts: 99
    edited January 2018

    Oh! I was so happy to read up on your posts that I forgot to vent about something! I was DENIED for group life insurance through my employer because of my BC! I wrote a letter of appeal today, and although I won't bore you with most of it, I'll share my finishing remarks to the underwriters...

    As underwriters and professional risk assessors, I am sure you are aware that the 5 year survival rate after treatment of my particular breast cancer diagnosis is between 98-99%. In addition, my records from Dr.__ may have included that my genetic and genomic testing puts me in a very low risk category for recurrence, as I have no genetic component to my breast cancer. This places my risk of death related to my diagnosis below 0.5% per year for each of the next 5 years. I strongly disagree with your assessment that my risk of death from this disease is too great to give me the peace of mind that life insurance would bring. I am not insuring myself against death from breast cancer; I am providing a safety net for my family should an accident or other tragedy occur. You should be able to assess my risk appropriately, and grant me the coverage that I am applying for.

    I was offended and absolutely fuming when I got their letter and it was hard to write back to them in complete sentences!

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  • HersheyKiss
    HersheyKiss Member Posts: 550
    edited January 2018

    DownNotOut, I'm very happy your simulation is scheduled for tomorrow. No more dipping your toe in the pool ... jump on in with us!!

    As far as protein needs, I eat 44-60 grams per day (mainly fish, chicken, cheese, and yogurt). Oh, did you know that dark chocolate has 4 grams of protein per serving?!? ;)

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Down, I eat one egg in the morning, some people have two, then I also have my oatmeal. I drink protein drink, one per day. I usually have some meat or fish at lunch and dinner, I might not have 60 grams of protein so that’s why I’m tired.

    Hershey I didn’t know dark chocolate got 4 grams of protein, what about milk chocolate?



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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    DownNotOut, so crummy of that life insurance company! Geez. But since I can't help you there, here was a typical day for me while I was trying to get 65 grams of protein per day:

    • Protein bar in the morning with my coffee when I remembered - 10 grams of protein
    • Cereal and milk - 8 grams (my normal breakfast)
    • Chicken and vegetables for lunch - aimed for 3 oz of chicken and 20 grams of protein
    • Protein drink (Odwalla or Naked) on the way to radiation - 15 grams
    • Salmon and vegetables for dinner - aimed for 3 oz of fish and 20 grams
    • Dark chocolate and peanut butter KIND bar for dessert or a snack when I was short - 8 grams

    So I actually felt better for the first two weeks! Then I got a little tired but the protein did help.


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  • SoniaL
    SoniaL Member Posts: 131
    edited January 2018

    DownNotOut...sorry to hear about the insurance, I hope that will get resolved. But glad to hear you are getting the rads started tomorrow. I know you're ready to start and then finish! :)

    Today was truly great, not having to go to the hospital on my way to work. I thought to myself that I would just get ready then drive to work like a "normal" person. The other great thing was that I wore a dress (didn't have to have a two-piece outfit) and did not have to take my shirt off all day!!!

    Still thinking of all you ladies here that are coming close to the finish line - hang in there. My skin is still pretty red with about 3 spots that look pretty bad. I'm still moisturizing multiple times a day and hope to see some improvement soon.

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  • BellWAMissy
    BellWAMissy Member Posts: 17
    edited January 2018

    Down- great letter to the insurance company! And so glad you got your simulation scheduled.

    Lewhy- thanks for posting about the "what about the next step?" We all minimize what we are going through-we are women- it's what we do. I have so many people telling me "so just the radiation and your done" as if it's like a 10 day course of antibiotics and then it's the end of the story.

    My infection is clearing up finally. When I described the pain to the Dr. as mastitis of the armpit, he said that it's basically what I had. Now I know why it hurt so much. I'm scheduled to start my first rad session on 2/5 now. I meet with rad nurse on Thursday and she'll check my skin over and hopefully it's a green light, full steam ahead.

    Happy Tuesday everyone!!

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Yay Sonia! I know that must have felt great driving straight to work. I work from home but I'm looking forward to not getting in my car first thing in the morning and being able to walk my neighborhood before work again. I'll be out there thursday. :)

    Down, I love you response letter. I wish I had thought of that. My husband and I had applied for some additional term insurance and our agent came to our house the day I had my original biopsy.... bad timing. Mine got denied, of course.

    BellWAMissy - good luck thursday, hope everything is good to proceed.

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  • Katiejane777
    Katiejane777 Member Posts: 109
    edited January 2018

    Hey Kokoro and Skookum welcome to the Jan Rads group!

    Congrats SoniaL on finishing!!!!!

    I'm 9/21 my boob is pretty pink and thickening in places. I've been doing my lymphatic drainage massage and drinking lots of water, exercising, and eating well. I see the physio again Thursday. My daughter (RT) said the reason people get different treatments is because of breast size, shape and the position of the tumour and any lymph node involvement. When they do your simulation they figure out the best way to treat your breast and plan your Radiationtreatment from there.

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  • kokoro
    kokoro Member Posts: 4
    edited January 2018

    Hey, thank you for the warm welcome.

    I did my first and second rads!!!! I feel good. No burns nor other nuisances at the moment... I suppose that worse still have to come.

    My doctor ask me to not put any cream over the treated skin. But I read here many suggestion to moisturize... I am confused!

    Good luck, girls

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Happy Tuesday ladies!!! Sonia I know what you meant these red burn spots, they will go away fast. Im one week post some of them calm down a lot, started peeling also.

    Katie thanks for the info, the Canadian ladies also got less days for radiation and we have more.

    Kokoro, did your RO tell you don’t use lotion before radiation or don’t use lotion all the time?


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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    I will be three weeks PFR (post final rads, are we using that acronym?) Anyway, my skin is SO much better! I can't believe it. I am back in a bra for work and now I am just having some dry skin-like peeling. I am still moisturizing twice per day with Vanicream which is what my RO suggested. After that he said I can use whatever I want but maybe try to avoid scented creams. There is light at the end of the tunnel my friends!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    To all who inquired, Just look at all my nasty nodes. I am sure that has some bearing on why I am having so many rads treatments. All is going well thus far.


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  • scaligirl
    scaligirl Member Posts: 74
    edited January 2018

    Lewhy and SoniaL, congrats on finishing! And Sonia you cracked me up. I hadn't really thought about having days where multiple people weren't staring intently at my boobs.

    Down, so glad your diagnosis came back good. What a relief it must be to finally have your simulation done. That sucks about the insurance. I hope they reconsider.

    Kokoro and Snookum, welcome to the group. Koko I didn't notice any change in my skin until the 3rd week so maybe you'll be lucky and have little skin reaction.

    As for me, had my weekly RO visit today. I had torn some skin under my boob last Friday night from just turning the wrong way in bed trying to flip myself over, but it's already healed itself up. I was noticing some thickening under my arm so scrubbed the hell out of it in the shower this morning with a little loofah pad I have and the doc actually said "you're skin is looking much better" than last week so there you go. So much for taking it easy... apparently my skin likes getting the crap beat out of it. Tomorrow is my last full breast treatment so that should help my underboob and underarm start to heal. I'll have 5 boosts left starting thursday so only a week away from being done. Yay :)

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