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Left breast radiation process advice/info please?

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TheWrongOne View Drop Down
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    Posted: Jan 24 2020 at 11:57pm
Hello everyone-
Can anyone share with me and help with some anxiety I am having about radiation? I have had my Chemo, a lumpectomy and 1 node removed, and been told I had a "total pathological response" and my stage 3 tnbc is in remission! Woop woop! God is good. 
That being said, I still have radiation to go that will be my "whole left breast, arm pit area and neck " ok...
I dont have the comfort level with the new to me RO as I have with my surgeon and my Oncologist. This could be why I am nervous but my concerns are that I have been set/positioned/markered/stickers,
and then had xrays and more marker and stickers, (sorry i dont know the proper names for steps) and not one person has mentioned breathing at all? I am starting 6.5weeks of treatment in 2 days and I am concerned about the closeness of the heart and how some info places a strong emphasis on measuring breathing motions when calculations are made? Only found one reference where breathing was part of the treatment instructions during the first procedure and not factored in to the computers? What was your experience?
Should I be concerned that all my images and xrays were random breathing and not at all controlled or advised? 
My other concern causing anxiety is that I asked the RO if there was any recommendation for best outcome either skin care or diet and his response was a flat No. I have read many of the TNBC forum posts here (thank you all) and see that pre treatments or prep is not unheard of so I would appreciate help if able in the next two days to prepare??? Advice and thoughts welcome. Thank you
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2020 at 1:17pm
I am currently getting radiation, but it is to my right breast. That being said, they have taken xrays and I had two ct scans, and both times they told me to hold my breath at certain times although I do not hold my breath when Im actually getting radiated. I am positioned on my stomach to hopefully protect any radiation hitting my lungs. I was told to prepare my skin two weeks ahead of time by using calendula cream, aquaphor, pure aloe Vera (from the plant) and tamanu oil. I have been using these everyday during radiation, and will confine to use them at least a month after. Hope this helps. 
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TheWrongOne View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TheWrongOne Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2020 at 10:38pm
Thank you for replying. I have been going to this RO for 2 weeks now for prep/scans etc and no one has recommended anything proactive and actually I was told to not use lotions or anything on my skin the entire 6.5 weeks. I am a person that has used moisturizers in many forms on my skin since I was a little girl. I kept up my routine and will be running to the store for Aquaphor and ordering more online thanks to you and other online articles i have been crash course reading. Kick Butt in your radiation...and maybe we can compare how we are doing from time to time? Tongue
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2020 at 7:16pm
yes, we definitely should keep in touch during radiation and check in on how were each doing. When do you start?  I am going into my fourth week tomorrow and my skin is just starting to get irritated and itchy. 
Also, Im not sure if I made this clear in my previous post, but when you are actually going for a radiation treatment you must have nothing on my skin. My doctor and nurses told me to just wash everyday with dove sensitive body wash or soap, dry off, and come to radiation with clean skin. Then when I go into the dressing room after the treatment I slather on the calendula cream. When I get home I add on some tamanu oil. I continue to put some more on throughout the day, and include aloe Vera. Then right before bed I load on the aquaphor. 
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kati1983 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2020 at 8:46pm
Hi! I am having my last dose of radiation tomorrow to my whole left breast, including my arm pit and neck (which targets your lymph nodes) - a total of 6 weeks.

I second Lauraev on the calendula cream and aquaphor!!

They had me do the breath hold when they took the preliminary CT scans to plan my treatment - but I did not have to do the breath hold while I was receiving treatment because the radiation fields w/o the breath hold were far enough away from my heart and w/o the breath hold there was less radiation to my lungs. There are different types of radiation treatment and the kind I am doing is called SBRT - https://stanfordhealthcare.org/medical-treatments/s/stereotactic-body-radiation-therapy.html

For skin care, I did not have much happen to me until the last 2 weeks. I was told to use lotion of choice 1x a day the first week, 2x a day the second week, 3x a day for the remaining weeks - which I did in combination with aloe from a plant. 

Around the beginning of the 5th week my skin got really dry and they had me do a modified Dakin's Solution which is - 1tsp of bleach into a gallon of water. You mix it up, pour it over a clean wash cloth and hold it to the area for 15 min. 1 - 2x a day. Then rinse with lukewarm water. I found this to be less drying at this stage than regular soap and water and typically made the area feel much better. I would do this in the evenings and then apply aquaphor to the whole area as well as Xeroform, which is a type of gauze that helps keep moisture in. (They gave me the Xeroform at the clinic). 

If you do use aquaphor or any other petroleum based lotion it will stain whatever you have on. I used some old tees. 

Hope that helps some! Overall it was not that bad. :) 


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Kellyless View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2020 at 10:50am
I wonder if this medical bleach solution for wounds would be a good option Kat - http://https://www.amazon.com/Vashe-Therapy-Solution-Steadmed-Medical/dp/B019660RPG/ref=sr_1_5?gclid=Cj0KCQiApt_xBRDxARIsAAMUMu_wUh_48eBW0k9HzaPsLTxpLSSBlNFWqvHysQJiM_0p2p355F7_wwIaAqX6EALw_wcB&hvadid=174201052493&hvdev=t&hvlocphy=9026877&hvnetw=g&hvqmt=e&hvrand=6720977246929509700&hvtargid=kwd-138388369923&hydadcr=21669_9444579&keywords=vashe+wound+solution&qid=1580744387&sr=8-5 - why can't I do a proper hyperlink post?? Anyway, Vashe is what my amazing wound care doctor had me use when I finally saw her after 9 months of failed healing from my surgery. it's my go to for wounds now, especially on my high risk arms and hands. I do woodworking or gardening almost everyday and I'm a klutz so I get lil wounds all the time, but I've had no issues  since using Vashe on my wounds. It's expensive but it goes a long way. It doesn't hurt at all which is a bonus. 

Edited by Kellyless - Feb 03 2020 at 10:51am
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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TheWrongOne View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TheWrongOne Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2020 at 9:42pm
What a great feeling it is to ask a question and get tips and info from women in the same boat.  I appreciate that you all have taken the time to help me.  I am still a bit shocked that the hospital where I am being treated does not recommend any skin care regime? The one ditto they provide basically says dont wear deodorant,  don't use washcloths, stay out of the sun.  They never said to even use moisturizer of any kind.  
I have had 6 treatments as of today. 
They do 8 "shots"? Of radiation every visit. Today they took5more xrays  and said they will do new xrays every 5 days!? Being that I have 5 more weeks I look to have 30 xrays in addition to the radiation? Does this sound familiar to anyone? 
Im in remission and find that almost scary to say still out of fear of return in the other breast or elsewhere. Dont get me wrong....I am happy,  and blessed to be told that all the pathology from surgery (after chemo) was negative for cancer...its just such a shock from start to finish for me that I feel a little scared to celebrate? I hope I explained that in a way someone can relate to? 
So far I am washing with Dove intense moisture wash at night, using a rotation of products (no alcohol, acids, etc) immediately after showering and remoisturize early morning hours before appointment. I asked the tech if I should rewash before treatment and she said no, as long as it had absorbed into my skin it is fine? 
No sunscreens in lotions. I am pink all over breast after 6 treatments but no pain. I bought Aquafor today.
Where can you buy Calendula? I live in a pretty rural area so no health food stores around. Is that possibly at walmart, cvs??? I want to try to do what I can to keep my skin supple since I still have reconstruction ahead? 
🤪🤕🤞👍
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kati1983 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2020 at 8:30pm
Kelly - thanks for the Vashe link it works :)

At my clinic they said any fragrance free lotion was ok - as long as I was using it multiple times a day. So anything could work for you, just as long as you are putting it on frequently to keep the skin from drying out. They also said 2 hours before treatment was ok to put lotion on - to give it time to absorb. CVS or Walmart might have some other options for more natural lotions too! 

Here is an amazon link for the Calendula though. There is also a burn version, but this is the one I used. 

For me, they took xrays at the beginning of each week to make sure the alignment was right - 3 each time. It is a lot. Do you see your doctor or a nurse each week? I would bring up to them your concerns - although I am sure they are going to reply with an answer about statistically the very small chance of the xrays causing cancer later and the benefit of getting the radiation out weighing those chances. But it may make you feel better to voice your concerns about it and learn more about the why they are doing what they are doing. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote esyna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2020 at 4:16pm
I had TNBC stage 1 with lumpectomy and radiation 10 years ago. I am fine. My radiated breast is perfect not a mark. I used aquaphor as soon as I was finished with my treatment and put it on until the morning of my next radiation treatment. I did this on my own. I was not told to keep the breast lubricated all the time. It worked for me. 
10 years ago the options were very limited. I refused Chemo and mastectomy.  I was treated at MSK in NYC. Good luck to those undergoing treatment now. 
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