Starting Radiation Sept. 2019
Hi all, I am starting rads on Sept. 11th. I will need 16 treatments. Just wondering if anyone else starts in September.
Does anyone have any tips or suggestions to make this easier??
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I will be starting in September also! My simulation is September 5th and I will be having 16 treatments also. I had IORT for the boosts. My RO said he might do 25 because of Chek2 mutation but wanted to do some research first
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I had 20 regular treatments plus 5 boosts finishing in July.
I got really swollen (which I did not expect) and got red, but no burning and nothing I couldn't tolerate.
My tips:
1) Start lubricating twice a day at least a week before the first treatment. Lubricate everywhere that might possibly get radiation - I did from collar bone down to a couple of inches below breast and from center line to under my arm.
2) Drink LOTS of water!
3) Walking almost every day actually helped me with fatigue. The times I was most fatigued, I realized that I hadn't walked for a few days.
4) Keep lubricating for at least several days after you have completed treatments
When I lubricated, I mixed 100% aloe vera juice w/ something else in the palm of my hand and then applied it. I read a ton of facebook posts and took notes about what people who did not burned did - and then came up w/ this. In the mornings, I mixed in glyphol base. Immediately after each treatment, I mixed in aquaphor. At bed time, I mixed in lubriderm or other lotion.
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smackan & DorothyB,
Thanks for the replies. Great tips, Dorothy. I will be sure to be prepared with all of your advice.
I also had IORT, Smackan, during initial lumpectomy. Unfortunately, had unclear margins 2 times. The second time was just some residual DCIS. Anyway, if not for the unclear margins, would have only needed the IORT. Nothing so far in my journey has gone as expected (3 surgeries and chemo). My genetic tests all came back normal. Funny, because a lot of cancer runs in my family. We'll have to compare notes once we begin our treatments.
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UpstateNYer- I am so sorry to hear about the multiple surgeries. I had an oncoplastic reduction at the time so I had large margins.
Let’s definitely continue to keep in touch and share our experiences. And thanks Dorothy for the tips!
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hello Smackan, My simulation is next week, Aug. 27th. I believe that my rads will begin on Sept. 9th. Will you be starting on the 9th as well? We would be on the same schedule and be able to compare our experiences. 😊
Nice that you had large margins with the oncoplastic lumpectomy. Wish my surgeon had gone larger initially with margins. Not sure why she didn't go larger. I had 2 small tumors, one 13mm and one 8mm, very close together. Anyway, larger tumor was oncotyped a 48, that is why I needed chemo. It was more of a preventive measure, as tumors were already removed. I was a bit surprised that they did not oncotype the smaller tumor as well. MO told me that it would not matter, as chemo was indicated by the larger tumor's oncotype. Did you have the oncotype test? Glad to see that you did not need chemo. It was very, very rough on me.
Yes, we will stay in touch. Take care and have a nice weekend. Pat. 💞
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Hi ladies - I also will start radiation on September 9th for a total of 16 treatments. I had my planning session this week so feel as prepared as I can be.
Dorothy- thank you for the recommendations!! Here's to hoping we all sail through as unscathed as possible
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Welcome Polkadot1- It will be so nice to have someone on the same rads schedule to compare experiences with. May I ask you how long your simulation appointment was? Mine is coming up next Tuesday.
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Yes, UpstateNYer, it will be very nice to be on the same track and cheer each other on! My simulation appointment took about an hour and 15 minutes. My RO is very thorough and answered all my questions and then of course, the actual set up with CT scan took a fair amount of time but was all very easy. Mine may have taken a bit longer since it is left-sided so they take scans with normal breathing as well as with holding my breath since that is what I will have to do during treatment.
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hi all, My simulation was today. Unfortunately, CT scan machine overheated and broke during my scan. I had to travel to another facility 18 miles away to receive CT scan. Also, won't start rads until Sept. 11th, as 10 days are needed to make up my treatment plan. Hopefully rads will go off without a hitch. So far nothing in this journey has gone smoothly for me.
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Sorry to hear about the problems. I feel the same as you, nothing has gone easy. My incisions have opened up on the IORT/BC side. PS cleaned them up today and doesn’t seem too worried. Also, have a large hematoma on the right side where the reduction was done. He said it’s already hard so I need to massage it so it doesn’t calcify. I am still waiting on my Oncotype, which I will get next week before my simulation. I expect it to be low but the way things are going, I hope not to get surprised.
How long did your simulation take? I am doing my radiation in the prone position so I am worried about laying on my stomach with still being sore fromthe reduction and lumpectomy.
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hello Smackan,, Seeing as my time of simulation was split, I would think about 30 minutes total time once I was in position on the table. I was on my back with a cushion under my knees. Why is your simulation to be done in prone position? Hoping your Oncotype comes back low. I was a grade 3, so I kind of was expecting mine to be high (even though both MO and surgeon kept reassuring me otherwise😣). Turned out I was correct-Onco was 48!!! Surprise, you need chemo after all. Wish these doctors would watch what they tell patients. We do not all fall into the cookie cutter pattern. Hoping and praying your comes back very low.
Take care, Pat
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Hello everybody! I was in the August group, but the beginning was so late that I will be in September. Last Tuesday I had my CT scan and my tattoos, now waiting for them to call me. I will surely start in September. Good luck to all of us! HUGS
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Welcome Sonia, Glad that you are joining our group. My radiation begins on Sept. 11th. Had my CT scan and tattoos today. I can't wait to get my radiation completed. Take care. Pat😊
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Looks like I will be a part of this group. I will have my mapping session on September 9th. And probably start my 4 week daily radiation treatments the 2nd week of September. Chemo ended last week. I am hoping that I will be getting back to somewhat normal soon
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Hello all and good luck to you. I finished rads last October 2018 … side effects not too bad, once I started healing it went quickly. A bit of information that will not apply to everyone. If you are a sexual assault survivor, you may want to read the article linked below. It refers to victims of childhood assault but I found it also applied to me. I was raped in college in the late 70's, reported to police, went to therapy and got on with my life. 40 years later the process of radiation (not the treatment itself) … darkened room, big scary machine, arms above your head, lay still, don't move, stripped naked to the waist with strange men touching me … triggered me. I was completely blindsided by PTSD, I had never experienced terror like that, at least not that I remembered. Current therapist says I disassociated from the rape and didn't remember the trauma until I was triggered. Having said all this, it doesn't happen to every sexual assault survivor and I have read lots of posts where the male therapists were kind and caring. I'm just encouraging you to talk to your RO or radiation therapists if you are feeling unusually anxious or having severe anxiety. My RO did everything he could to help me through my treatment including only allowing female rad therapists into the room. Good luck to all.
http://cancer.nautil.us/article/268/when-cancer-treatment-re-traumatizes-survivors-of-sexual-trauma
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Welcome Dogrunnermom & Grandmaadams,
So very sorry to hear of your experience 40 years ago, Grandmaadams. How horrible that you experienced PTSD. I can certainly see how your rads treatment set up could trigger such a thing. Thank goodness you had a caring RO, who could accommodate your needs. Hope you are doing well and feeling better now. Take care, Pat
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I start rads next Tues the 3rd. I have already had the simulation. Luckily my clinic doesn't do tattoos I didn't want that- not that it really mattered with all of my scars. They just do sharpie with these clear stickies over it. It's been almost 2 weeks and they haven't budged. My sim went pretty smooth. The only thing that bothered me was laying on the hard table since I have FMS on top of everything else.
The clinic I go to has a lady that makes a special lotion for breast cancer patients. She is a survivor herself and afterwards she created this lotion and they highly recommend it among a couple of other things if you don't want to buy hers. I am going for hers since they said it was the best. It has alot of what I saw others using. They also suggested Caldesene powder for under the breasts in the crease if you have sweating since it still hot where I live.
I hope everyone starting rads in Sept has little side effects.
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Welcome Pinkarmor- I just love your nickname. My clinic did tattoos on me and I do not like them at all. The one between my breasts looks like a blackhead and the 2 on either side of me look like Sharpie ink that had smeared. I would love to have them removed at some point. Guess that should be the least of my worries. Can you tell me the name of the lotion that you were speaking about? Can it be ordered online? I start rads on Sept. 11th. for the first of 16 treatments. Should be done by early Oct. How many treatments do you need? Best wishes. Pat
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Welcome everyone- I am a having rads this month too- if my Oncotype score comes back low as expected.My simulation is next week. Would love to hear about this lotion. I know rads are different than the sun but I get really bad sun poisoning so I am hoping it doesn’t happen with rads. I am doing 15 or 25 rads (RO unsure due to Chek2 mutation recently discovered). It’s weird that this part is the only phase that has made me nervous during this whole process so far.
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For those who asked about the radiation lotion here is the info. It's actually a gel made from certified organic bontanicals of ten fold aloe, Japanese green tea, Calendula, Irish Moss, and tamarind(my understanding is this helps hold moisture in the skin). It has no Parabens, alcohol, or perfume. It's called Botanical Moistruzing Gel. It's sold by Andree's in Athens, Ga. Her website is essentialsoapsinc ( .com) it wouldn't let me post the website link - you can order online and have it shipped or call 706-354-1533.
I pick mine up after my 1st treatment next week. I hope this works as well as they say because I have extra sensitive skin. Had a tegederm over a open wound for less than 24 hrs and it has turn my skin where the adhesive touched a bright pink. Won't tell you what a bandaid can do to me. I will be sure to let you all know how it works.
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Pat, thanks I chose the name Pink Armor because I feel like we are soldiers in armor getting ready or currently doing battle against this monster. I chose pink of course because it's my favorite color and the color of breast cancer.
I had my simulation but they had not calculated my dosage or length of treatment yet. I had some open wounds from a fall I took 12 days after my lumpectomy and reduction surgery. The one on the right side was huge- it was almost the entire incision on the underneath crease. It was 10 cm wide and 8 cm deep. It is now down to less than a Q tip deep and less than that wide; thanks to the wound care clinic. The hole on the left side started out 3 cm wide but it went 10 cm deep. This one is still a big issue. It's trying to close before it heals from the bottom up. We are packing with collagen and silver rope is to stop the hole from closing.Otherwise they would have to go in and open it again. I have had enough surgery to last me a lifetime. My cancer was in the right side so it should be healed enough to start treatment. It's been 3 months and they don't want to wait much longer. I am hoping that since they feel they got it all and this is just a precaution that it won't be but a few weeks. I will let you know. Good luck with your treatment - and may you have no side effects.
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Thanks for the info on the moisturizer PinkArmor. I lived in Athens for about 7 yearsand don't think I ever went into her shop,
And thanks for the welcome UpstateNYer
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Hello ladies! Today I had my simulation and next Monday I'll start rads. I made my own skin lotion using a common cream with vitamins A and E, to which I added frankinsence essential oil, some rose water and some dmso. I'm planning to added some lavender or chamomille oil too. In some thread of rads I read that someone had recommended to soak with apple cider vinegar ... I can't find the thread... do you know anything about it? I know that vinegar works great for sunburn, but this is not the same ...
I hope this treatment goes smoothly and without any mishaps for all of us ... we have been through so much! HUGS
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I have my set up appointment for rad on Thursday so all start in September. Glad to have fellow warriors with me!
Appreciate the tips.with the lotion. I had oncoplastic reduction with lumpectomy followed by a separate surgery for sentinel node. I am trying to help with lumps in those scars with cocoa buy with vitamin D.
Good luck to all!!😋
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Hi all! I have an appointment to meet with the radiation department on September 19th. Not sure about the schedule yet will be but I heard 6 weeks.
I had a single (right) mastectomy in January for multifocal IDC, 10/14 nodes positive. Just finished 8 cycles of chemo (FEC/Taxotere) last Wednesday.
My chemo board was amazing and although I wish none of us were here, I'm glad for the support. Chin up and shoulders back. We'll get through this.
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Welcome to the September group everyone.
Rlws- I had oncoplastic reduction also but I have developed large Hematomas. My PS said the smaller one is from where they put my breast back together from the lumpectomy and it may never go away. The large one is on the non-BC side. I have been massaging but I actually feel like that is making them worse. I see my SO on Tuesday so I am going to see what he thinks as the larger one is really uncomfortable. I am concerned about radiation with these and some small open wounds that are still draining but my PS wasn’t concerned at all
Looking forward to hearing how we all do with rads.
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Hi all,
Pinkarmor- sure hope your wounds will be healed enough to do rads. Understandable about not wanting more surgery. I was prepped 4 times for surgery, but actually had 3 surgeries. Third surgery was first postponed because I needed chemo due to high onco score coming in on day of surgery. I did not expect to have chemo added to the mix. Wish all of this was behind me, but we'll get through it.
Smackan- hope your hematomas and wounds heal up soon. Hopefully, they won't interfere with your rads schedule. Let us know when you get your onco score. I sure pray that it will be low.
Welcome rlws and pokyspider😊
Hope everyone has a nice Labor Day Weekend.
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Smackan - I have a couple of seromas. One in the breast where they removed the tumor and another larger one at the SNB site. The RO seemed to be ok with them, didn't think radiation would be a problem. Although I am worried that radiation will make them harder and less likely to to absorbed. My lymphadema therapist told me to massage both of them and that has helped some. But the armpit one is really annoying
Can they drain the hematomas? Did they say how the non BC side hematoma developed?
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smackan - I am sorry you are having the issues with the oncolplastic reconstruction. I have some areas I am massaging that are thick but it is mainly on my sides, the rest seems to be recovering well. My surgery was August 7tth and I have been cleared to start radiation but because I had the second procedure my rad appointment is this week. I hope your PO helps you out!
I do also have an area under my armpit that I am having a difficult time getting down the inflammation, BS just said do exercises and massage, so that is what I am doing.
Good luck to all this week.
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