November 2020 Radiation Group
I may as well start for the new month!
I go in today for my first session and have 20 total, I think it’s 16 plus the boost. My last day is probably the day after Thanksgiving as they are open on the Sunday before Thanksgiving To get that day in.
I have a little stack of various chemical free lotions/oils including Aloe, Calendula, essential oils, colloidal silver, cbd salve. I know Aquafor is talked about a lot here but I’d rather not use petroleum based products.
Good luck everyone!
Comments
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Hi! I have my simulation this coming Friday, 11/6. I'm not overly prepared for this part of treatment. It's honestly scared me, so I tried to stay away from poking around too much on this topic. But it's coming whether I want it to or not. I will have 30 sessions and I'm hoping to finish before the New Year. I'm assuming I won't start until the week of 11/16. I'm still having some discomfort from my surgery, mostly in my armpit. I'm numb from the shoulder to the elbow on the underside and back of my arm. It feels kind of like a bad sunburn...I'm told I'll only know with time if it's permanent. I don't have any swelling and my arm looks fine. It does hurt to keep it raised above my head though, so not sure what position I'll be in for the treatments.
Good luck to everyone!!
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If I may,
I had 30 sessions total. Due to DX, I know for sure I was fried. The below is totally my experience.
Rad fatigue - came sudden and hard. There were times I literally drooped due to the fatigue.
Rad burns- I only used cold organic aloe gel. My afternoon routine was wet (not soak) gauzes to cover rad area. Laid flat on my couch turned the ceiling fan on and took naps.
Exercise- walked min 30 min every day.
Post rad 3 yrs- other than minor lung damage which was due to rad. Have no other issue.
P.S. I had traditional rad therapy.
Take care sisters.
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Hi ladies,
I also start radiation this week. Everyone tells me that after making it through chemo and surgery, I shouldn’t worry about radiation. But, I think it’s only natural that you you do. I’m a little nervous about starting. Hoping we can connect during this. Thanks for starting this thread.
Kristen
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Starting Nov 4 here, 16 treatments. I’m really nervous, more than I was for chemo.
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hi all!
had my simulation today, it was pretty easy. I did get sharpie markings, covered with tape to help maintain. I will go for 20 treatments starting November 10. I have bought a bunch of different creams and some loose t shirts. I guess we shall see how this goes..
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I went for my simulation on 11/02 still waiting for date to start. My oncology told me not to use any cream including soap, I mean nothing even when showering I must just pat the area with damp towel.😓 she asked to buy some lynon dressing to put during my session hope it will help with the burns.
Quick question do any of you still having joint pain months after chemo? My hands are getting worse by day especially when I wake up in the morning it’s scary.
I’m back to gym hopefully I can stay on through out my treatment and after.
Keep strong, all the best to you all
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Hello Ladies...I did my simulation today and it went fine. I was just cleared 10/28 by my plastic to return to normal activities so I worked hard the last several days to get enough range of motion to have my arms up. I was able to get into see a pt lymphadema specialist who worked with me on Friday with some massage and gave me exercises. Now I'm just waiting on a date to start. I'm not looking forward to this but I'm ready to get it done. I'll have 5 weeks and the goal is to finish before Christmas. I did well through chemo and I'm finally feeling better after surgery...I'm just getting tired of all the treatment. Let's get each other through this next phase
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hi everyone, looking forward to reading all about your different experiences and treatments.
I have session 3 today. I think what bothers me the most is that I went into this having hardly information, compared to surgery and hormones. I now know it's hypofractionated Radiation which I guess is standard now. When I went in Monday the techs showed me the imaging screen very quickly and said ok here is your breast, ribs and part of your lung which we can't avoid, let's go in now. I feel totally blindsided as the RO had told me they would avoid the heart and lung. It was all said nonchalantly with no time to ask or say anything. Disappointed.
I was anxious beforehand, just the emotions of it all. But apart from being a little weird, it wasn't a big deal. The breathing went ok and it is fast. I think I’m just fighting against this internally, in a way I did not with surgery or hormones.
Good luck ladies!
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I hear you Ladyc2020. This is the part of treatment that is causing me the most anxiety. When choosing my surgery I nearly opted for a mastectomy instead of a lumpectomy because I didn't want the radiation. I did a virtual visit with the radiation oncologist before making my surgical decision. I was worried about the damage to the heart and lungs most. The RO explained all they do to keep it away, but did tell me there's a possibility of a very small part of the lung being affected. This would be something they watch for. I'm still not 100% comfortable with everything, but I guess I'm ready for this?
I also choose to do the traditional 6-week treatment, not the 4-week hypofractionated. We talked about both options and she mentioned they'd been doing the hypo on older women for about 10 years, but now it's used on younger women as well. The traditional has been used for 25+ years, or something like that. I guess for me, since I'm only 40, I wanted to go with the option that has the most data behind it on potential long term effects out 25+ years, rather than only having 10 years of data. I'm planning to be here in 25+ years, so I figured what's 2 more weeks of treatment matter. My understanding is it's the same amount of radiation no matter if you do it 4 or 6 weeks, just less strength (probably the wrong term) each time if you spread it over more days (please correct me if I'm wrong on this). Regardless, I'm nervous...I hope everything goes smoothly for all of us these next several weeks no matter what version of radiation we selected to endure.0 -
I also am more nervous about this part than the surgery, chemo or the AI. I had my first treatment today. It scared me enough when I walked inand saw the machine, I wanted to run out of the room.
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Good Evening - My left breast excisional biospy was in July, and after having ruled out right breast cancer/and sentinel lymph node involvement (September surgery), and then insisting on - and finally getting my Oncotype result of 11 today; I'll call to schedule my 33 radiation treatments tomorrow.
As others have said, and due to some of my outside research and/or the posts on these boards .. I have been very alarmed regarding radiation. To the point I've wanted to seek other opinions on this treatment or forego it altogether. Especially since the radiation treatments will be on the left side (heart and lung risks,etc). I truly hope to find here some support, information, insights, and reinforcement for my choice to do radiation.~ Love and Light ~
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mamma - after being diagnosed I was just so relieved that lumpectomy was recommended I didn’t think about radiation much until right after surgery. Hard to learn everything in such a short time, and I was focused on cancer, one step at a time. Radiation was last on my list. From what I have read this week, hypofractionated has reported lower side effects. It seems impossible to make our own best decisions based on 1 week - 2 months of ‘education’ aka google.
KMom - it’s just sorta scary right? Today I was definitely more at ease though, and listened to some good music on the drive. My first day I was crying on the drive there.
NorCal - I hope you can find lots of information here! I am left side too. Imaging showed my heart to be in the middle and will not ( hmmm) be effected, however it seems a part of my lung cannot be avoided. I am literally still researching clinical trials on less radiation.... and even talked to my RO today about doing less than what is planned. I don’t know what will happen yet and he may not go for my ‘ideas’ but it’s worth exploring everything. Good luck!
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I will be starting radiation this month. My doctor mentioned that Uniqlo has a great bra for radiotherapy / radiation however it is not listed that way on their website. Has anyone found this bra or another option that is extremely comfortable during this process? If you have, please let me know details.
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Session 4 done. RO gave me skincare instructions today. Cornstarch all day every day (not sure how to manage that), a prescription cortisone cream or OTC 1% hydrocortisone, and a cream they gave me.
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NorCal - ask your RO if you can have radiation in the prone position. Basically you lay on your stomach and your boob drops thru an opening in the table. This way they are able to keep the radiation as far away from your heart as possible. I am left side also. They put me on 20 treatment routine, 16 whole breast and 4 boost. I finished whole breast today and start my boosts tomorrow. So my skin is light red, no blisters, slightly itchy, did get some skin cracking in my IMF so have been keeping mepilex foam on it to protect it and prevent skin to skin contact. So far it has been very bearable. My breast is a bit tender on the inside but not terrible, I have been riding my horse all the way through.
Basically there are three things to stay on top of during radiation. 1 - moisturize, moisturize, moisturize. At least 3x a day. 2 - NO skin to skin contact. So either a very good bra that LIFTS (my RO sounds like a drill sargeant LIFT LIFT LIFT), or keep a soft piece of fabric under each breast and in the cleavage to prevent skin to skin contact. If you google "bra liners" on Amazon, they actually make special padding to go in the IMF to prevent skin to skin contact. 3 - Keep the area dry (eg no boob sweat). This is where the corn starch comes in. I have a big body puff that I use to puff it on (I actually use Anti Monkey Butt powder but it is cornstarch with a couple other things in it).
Also stay hydrated, drink lots of water. I totally understand your concerns about rads, I actually wanted to get a BMX just to avoid rads. BS talked me out of it, mostly because of COVID. At this point, I am happy she did. If I had had worse side effects I might not feel that way, but so far it seems like things are working out ok.
You REALLY do not want to forego radiation. It drops the risk of local recurrence from over 30% to low single digits. It is a DRAMATIC reduction in local recurrence. After I read the statistics, I resigned myself to going thru radiation with the best positive attitude I could and just be diligent about the skin care. I want to live. So if my skin gets thicker or less pleasant to touch, oh well. At least I am alive and hopefully will remain cancer free.
Best of wishes to you, and keep coming back and let us know how you are doing.
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Hi, meeting with my radiologist for my radiation prep day today. Hope to get through these next steps with my fellow radiation gals here. Mixed emotions ready to get this started. Bummed that this road to cancer free is not over yet. I am scheduled for 5 weeks of radition, hope to get done before Christmas...since I have met my insurance deductable for the year!
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I got my bottles of Rejuvaskin skin recovery cream and it’s really nice stuff, ladies. Nicer feel Than just aloe and some salves I have. I have #7 today and have a small amount of darkening so far- like a shade near my armpit.
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I did my run through today and will start radiation tomorrow. Like many of you I am not looking forward to this part but I know it’s very effective so I’ll do it. I’ll have 5 weeks and so I’ll be done before Christmas. The frustrating part for me is I get through each phase of treatment, start to feel better and back to some kind of normal and then it’s time for the next thing. Fingers crossed it goes well for all of us
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just finished treatment 2/15. Yesterday they told me the RO had cut me from 20 to 15, he decided to not do the boost. Not sure why I need to ask him that when I see him next.
Both days I have a little bit of stinging type pain my lumpectomy incision immediately after treatment- is that my imagination?
They recommended Egyptian magic cream (or eucerin or Aquafor), of course I had bought a bunch of others, they say avoid petroleum, though and I think mine has it..
So far so good.
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Joining in! I am in the waiting area for treatment 2 out of 25. I finish December 15. It’s so interesting how different instructions are-they told me no cornstarch or powder. Moisturize using aveeno unscented until the skin starts to get pink and then aquaphor after that. Glad this group is going!
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6 out of 16 today. Other than a scheduling glitch today, still moving on. It's feeling less scary and more routine.I'm generally in and out so fast I hardly have time to think about it. Getting in from the parking garage, thru Covid checks, and changing room takes longer than the treatment itself.
Whitney923, today I felt a stinging feeling DURING the treatment. I thought it was my imagination. Maybe not.
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Hi All,
I'm brand new here, just registered for the forums today. I had a lumpectomy 3 weeks ago, and have an appt. next week to talk to the radiation oncologist. I've been feeling fine about the idea of radiation, and have been thinking that it's just not going to be any big deal other than a lot of driving, but reading through some of the posts here now I'm a little nervous. I should be going 5x/week for 6 weeks, so 30 sessions total.
My main question for right now is about what I should be asking at next week's appointment. The info above is all I've been told about radiation. I don't even know what I need to know, and I am a person who likes to have a lot of information.
For background, I'm told it was stage 1a, grade 2, estrogen and progesterone +, her2 -.
I will appreciate any advice on what I should be asking the Dr. at this point.
Thanks!
Rachel
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Kim, I see you are in Nashville, we are neighbors! I am in Franklin. how did your meeting go? Do you know when you start treatment?
Rachel, I felt like you do, I wanted a lot of information and got not much from my doc at first. I would read the thread in this forum about what to do/get/buy before radiation (or something like that- it's super long) but don't spend a lot of money on lotions until you know which your doc recommends (I made that mistake). Read good websites (I read some good hospital ones about what to expect at the simulation and at treatments). I wanted to know what to expect; how it would look/go every day. If you want to know more about the medicine or science, I'd tell your doctor that you want to know all the detail.
kmom i am glad to hear I'm not alone (though sorry you are having the stinging too). It's bothering me right now, actually. Not enough to be an issue but on day 3 it concerns me it will get worse..0 -
Whitney it is odd that they told you avoid petroleum products then told you to use Aquaphor because it is 55% petrolatum jelly (eg vaseline). I used Jeans Cream (aloe vera and Vit e with other stuff also) 2x a day, CeraVe moisturizing cream at night, and then at night only slathered a thick coat of CeraVe Healing Ointment over the top of that. the CeraVe Healing Ointment is very similar to Aquaphor but it has hyaluronic acid for moisturinzing, and ceramides to help rebuild the skins lipid layer. I felt like it was a better formulation (but it is also 55% petrolatum which is why it only gets used at bedtime).
Good luck with your treatment, not everyone has horrid side effects. My breast turned red (but not a bright tomato red) and I have some itching. Also got a little cracking in my IMF but that was my fault for not preventing skin to skin contact well enough. I rode my horse all thru treatment.
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hi ladies, I'm curious how many of you are having radiation post mastectomy?
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jujumartin hello....I had chemo, bilateral mastectomy nipple sparing, skin sparing direct to implant 9/21 and I’m 3 days into radiation. Fingers crossed all goes well.
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Arabian, I thought that was weird. I assumed the nurse misspoke? Or maybe I misunderstood, honestly I'm not sure. I'm 4 treatments in, starting to be a little pink, slightly itchy and a feeling slightly burned. I've got some nutritional supplements for wound care (otc stuff) that I'm considering but they don't taste great..
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hi ladies, I’ve done 15 WB treatments, 1more to go, then 4 of the boost. It’s going ok. I have some skin changes, but very tolerable. Main thing for me is tiredness. Very tired. But almost done!
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ok, so I'm 9 sessions in and the nipple on my treated breast is now way (way!) larger than my other, like when I was breastfeeding. And tender. The breast itself is not noticeably swollen.
Is this a thing for anyone else?
Otherwise, I'm hanging in there. My skin is pink and a bit itchy, it's broken out which I don't know if that's a dermatistis-type rash or if the lotion is breaking me out. I'm tired, unsure if it's radiation related or just life related, though on Wednesday it hit me like a freight train out of nowhere and I was so tired I didn't want to move, so pretty sure that is the radiation.
Hope everyone is doing well.
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whitney923.....I’m 10 down today. I had bilateral mastectomy skin and nipple sparing. My nipple still looks the same as it did and due to getting a mastectomy I’m numb so I don’t feel anything😃. My skin is pink but that’s it so far. I’d talk to your RO about the rash. I see my RO every Friday snd she checks out my skin. They told me if I do get a rash they have other options to deal with it. I had chemo before surgery and they also told me if I had discomfort I could use the numbing cream I used for my port in my skin to help. If you aren’t seeing your doctor soon I’d ask the techs to grab the RO or nurse to look at that rash.
Keep us posted on your progress
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