August 2018 Starting Radiation

astyanax66

Hi, all,

A number of folks from summer chemo groups seem to be talking about starting radiation in August, so I thought I'd open the forum if the moderators are okay with that.

Thank you,

Dee

astyanax66

So, Hi, all!

I start radiation around August 6 or 7, 20 doses in total, including the boosts (4 weeks, 5 days a week). I go on the 26th of July for what I presume is the CT scan and making of the mold and/or tattooing. I don't know if that includes the simulation or not. I've had my first appointment with the RO, which included a discussion of how many sessions, a short video on the procedure, and a review of my history. I completed Paclitaxel (Taxol) on June 26, but I still have several months of Herceptin ahead.

I had a question about the planning CT scan. Is this done with contrast? What else do they "see" on the scan? Just curious.

I read a lot of helpful info about things to take and have on hand.

I guess the hardest part for me is that I live an hour south of the radiation center and an hour north of work. I'm able to telecommute 3 days a week, but the rest of the time, it's going to be hours of driving. UGH.

Dee

Djt

Hi Dee, et all. Yes, me too for August radiation. I actually begin on July 23rd for what they are callng a dry run, x ray, and then the next day, the 24th is my first rad. I set it up for 9 am and here, it's Monday through Friday.

I went a week ago for the CAT scan, tattooing, etc. Where they tak measurements and get you prescribed for dosages. Mine is 28 days, so my last day is Aug. 30, barring any issues. I'm very fortunate I'm about a 10 minute drive from the clinic.

I've been on the phone for days trying to find out my share of the cost, with little results. I can't seem to get an answer, it has to do with codes, and co pays. I'm thinking it looks like 20.00 each time, but hope that is the most I'm looking at.

I hope we can all power through this part, as we have done with the chemo.... Without very much in the way of issues. My sister had it 10 years ago...Her main complaint was fatigue.

Re the tattooing. When that part came up, all I heard was the word needle, and I put my foot down. Don't get me wrong, I have tattoos, plenty. I just feel the invasive thing and asked why? I don't want black dot tatts on me, like a concentration camp survivor. They DO have an alternative method. I got marker with waterproof stickers over them. It's holding up fine.

Also, expect a big high tec camera taking boob shoots up close.

Djt

Dee, no contrast or IV for the preliminary CAT scan, at least here. It just a measuring type of situation. It took maybe 20 minutes, hands above head, can't move. No issues with it, but I wish they had warned me of the close up camera shots.

That's difficult driving! Are you sure there are no other satellite areas? The daily visits will be tiring for sure.

astyanax66

Hi! I figured some folks from our chemo group would come on over...Thanks for telling me more about the procedure. Do the "tattoos" fade? I also have a tattoo, but yes, that was a whole different thing, and it's hidden so I can show it or not on my upper back. (Out of all this stuff, only 2 people have been less than gentle--one was the person doing the radioactive tracer injections before surgery--I almost screamed--it was far worse than the tattoo).

Did you have to have dye contrast during the CT scan? I'm always a bit worried since I have a shellfish allergy (I know they use a different solution now, but I still have worries--and I love shrimp and scallops; they just don't love me!)

I'll be eager to hear about July 23 and hope it all goes well!

Dee

astyanax66

Oooops, our posts crossed...thank you, I loathe the IV for contrast. Hopefully won't need it!

We live in the middle of nowhere. It's 20 minutes to a grocery store and 45 minutes to the nearest "town." The medical center is on the far side of town, and with traffic, it's about 55 minutes. I wish we lived somewhere closer...sigh.

Dee

Ingerp

Hey all--as I've posted elsewhere, I finally got to pencil in dates if not times for the pre-appointments (mammo/meet with RO/scan/tats) on August 9th; first rads August 20th. Dee--you'd think I'd remember more from two years ago but I don't remember the scan being a big deal so I don't think any contrast. Re: the tattoos--I honestly forgot I had them. They were blue, and not sure I could find them if I tried. The scheduler lady said they'll probably be able to use the middle one(s?) from last time and just add one to the outside of my right hooter. As I've also griped elsewhere, she told me I'm scheduled for 33 sessions vs. the 20 I had last time. I *just* scheduled a WDW weekend away yesterday assuming I'd be done by mid-September but I had to call them back and move it back a month (and fork over another $300-BOOO!!!).

Dee that sucks about the commute. Exactly why I believe the Canadian Protocol was developed, and silly me, I thought everybody was down to 20 sessions. At least it's a limited time and you will power through. Plus the appts themselves are super short--like 10 minutes once you get in there. You should be able to schedule them around the same time most days, so hopefully you can figure out a routine that kinda sorta works for you. (Can work cut you a break re: telecommuting for four weeks?) (And not to bounce off topic, but do you know if you're going to get six or twelve months total of H? My MO is going to an ASCO conference next month and said she'll decide after she sees the data whether or not to cut her patients back to six.)

For everyone (at least those without a terrible commute) I don't remember rads being that big a deal. Yes your skin will get kinda gross by the end, but I only remember 2-3 days that felt pretty fatigue-y. It's just the hassle of getting your butt to the place five days a week for 4-6.5 weeks. We'll all get through. And then it'll be lovely autumn. :-)

astyanax66

Hi, Ingerp!

Well, once I get my schedule, I think I might just spend the night near the medical center, maybe 2 nights a week, and work from there. Yes, thankfully I can telecommute 3-4 days a week. I have to be on campus (usually for looong, boring meetings) 1-2 days a week, so there is some flexibility. Our tax fellow said to save hotel bills, meals, and mileage--it all counts!

Yeah, what's up with folks not using the Canadian protocol? It's been around a while, and I thought it would have gained traction by now. Hmmm.

I'll be eager to hear what your MO says about Herceptin as well. I have read not only the Persephone study, but also the PHARE one, and while the latter did not demonstrate overall non-inferiority, it did for people with node-negative disease and tumors less than 2 cm. However, it did not address histologic grade. Lots to digest, and I'm asking the same questions about it as you.

Dee

Ingerp

Yes--I told my MO we have until November to figure it out. ;-) (And part of me thinks that since I signed on to the recommended tx--which I definitely had to be convinced of--another six months of H only is really NBD if there is any benefit at all. I don't think I'll be pushing to stop at six months if she has any inclination at all to go for the full year.)

Djt

Hi Ingerp. Yes, so looking forward to lovely autumn! Hope you feeling pretty good these days.

Dee, that sounds like a great alternative plan to shorten your trips, it will pass much quicker if you stay a day or 2, and do work like that.

CarolAnnieLumpLump

Hello All, I will be having my lumpectomy August 8 and assume I will start radiation by the end of the month or beginning of September. I am wondering how much time to plan to be off work for the surgery? The paperwork I got from the Dr office said you can return to work the next day if you wish! I am not sure I will be able to do my job that quickly. How long were you off?

Ingerp

I think I treated myself to three days off but really it’s not a big surgery. Some women do it without any prescription pain meds but I treated myself to a few days of those too cuz heck why not.

astyanax66

Hi—I had surgery on Wednesday, but late in day. I took off Thursday and Friday, which also gave me the weekend. Good decision! I didn't take off any time for my port...ouch. I needed at least a day to recover and didn't. I’d say 2 days at least for lumpectomy. Of course, everyone will be different. I have a sedentary job. Good luck with your surgery

Dee

Djt

Hi Group, so if been reading another thread on this site re radiation, and came across some very disturbing incidences of skin side effects i.e. burning of skin. Up to now, i have not been too alarmed or even concerned about radiation therapy as I figured how bad can it. Be after chemo. BUT. this thread I am referring to alarmed the heck out of me. One patient in particular referred to severe burns, and blisters requiring skin crafts, etc. I won't go further, as we are all worried enough. But has any one expriended bad burning or heard of it? I'm consulting with my rad onc next week to sign the consent form, which I will now Go over with a fine tooth comb. I guess I didn't think it would be bad, as she used the term tanned breast to me, but im quite fair, and don't tan!

Ingerp

Djt--I just do not remember it being all that bad. What I *can* tell you is a lot depends on how much sun exposure you've had to the area in your life. Like I remember a distinct line between where I would have gotten sun while in a swimsuit and the part of the breast that would have always been covered when I was younger. I think extreme skin reactions are very rare. I assume you've perused the rads groups from the last several months? I'm sure most are not having horror stories.

astyanax66

Hi DJT--what I was told was that my skin may darken, like a tan, and that I might expect more "firmness" in that area by the end of radiation, but that both would fade over time. I was assured that if there was any sort of sunburn, they would treat it and perhaps take a break for a day. What the RO most wanted me to know was about the cumulative fatigue.

I see her again on the 26th, so I'll be sure and ask more questions....

Dee

Djt

Thanks, Dee and Ingerp. Yes, that post I read threw me a big curve ball. I must do this, and succeed. My sister had radiation in the past, and recalls the extreme tiredness, but not burning. She told me to be very aware, and to self advocate and speak up. (She is a nurse)

Another thought, I'm underwrire bra devoted, and am wondering what to get that may be better for radiation. Anyone else bra shopping? I'm on The large side, and so use to underwires, no clue what to look for! Also shopping for skin creams to help, anyone else yet?

Ingerp

Djt--I actually ordered some new bras. Soft cotton, no underwire. I was a little surprised to see when they came in that apparently they were *exactly* what I ordered two years ago. You don't want anything nice--I remember them being stained from marker pens but I think it's pretty much washed out. I'd think gentle exercise bras--maybe even a size larger than you normally take.

Djt

Thanks, Ingerp. I just picked up 3 different ones, hoping for the best. Im also womdering about emu oil, i have seen some referencing it as a good radiation skin care oil. I want to be as prepared as possible.

Ingerp

Djt--I know there are lots of recommendations about various oils/creams but I think it's more important that you slather on some stuff a couple of times a day rather than specifically what that something is. I had 3-4 different creams, including Aquaphor and Desitin, and would grab whatever was handy when I thought about it. I think if there were a magic bullet, we'd all know about it.

Djt

Ingerp, ok, I get it now, use something as often as possible. Will do. I will get some aquaphor aand some aveeno to start. I think some aloe as well.

RobinJ3024

hey all, I feel like I’m late to the party since some of you guys know each other already!

I have my first appt with RO on July 31st. I don’t have any details yet. But according to the radiation therapist who is my neighbor, it will probably start a couple of weeks after my appt.

she’s told me that I can’t use any lotions, deodorants, wear loose shirts, no bra as much as possible. But being that I’m a little larger, I have to wear one in public, so have been looking at the other boards for ideas. And it looks like other RO’s are okay with certain lotions. itS All very confusing.

So glad to meet you all.

Ingerp

They'll go over your skin care when you meet with your RO. FWIW--I don't think you have to be super strict with that stuff. If it's more comfortable wearing a loose, soft bra, I'd say go ahead. You just don't want anything poking your skin unnecessarily.

ColleenS80

Hi All!

I had my lumpectomy yesterday and assume I’ll start radiation in August. I’m a teacher and asked my doctors if I’d be ok working while doing this...she said they are very flexible with appointments and I should be able to go after school no problem. I’m just hoping I don’t get completely worn out going after school every day!

Did your onc or surgeon set up your initial apt with RO? I’d like to get started as soon as I can. We had a family Disney trip planned for June that we had to move to October...it’s now set for our fall break (Oct 7-13) and I’m really hoping we dont have to move it again!

Good to “meet” everyone

Ingerp

My BS coordinated with my RO two years ago, although I’m doing everything through one hospital. They all have access to my records, know each other well, . . . Because I had chemo this time, my MO’s office let my RO’s office know when I could start the process.

astyanax66

Hi, Colleen--what Ingerp said--mine coordinated with each other. I hope your surgery went well and that you are taking it easy for a few days.

Dee

RobinJ3024

Hey ladies,

In getting ready for upcoming radiation treatment, I've been looking for comfortable looking, soft bras. I saw some people on the boards had tried Coobie bras and they look really soft, so I ordered a couple to try.

I am right between a Full Size and an X Large (X Large is bigger than Full Size). I ordered one of each. I tried on the Full Size and it does feel wonderful. Very soft, doesn't poke anywhere. But a little snug, so I probably do need the X Large.

CONS (so far) -- they pull over your head (not a fan)

pads have to be taken out when you wash them

Pros (so far) -- very soft

have a pad for modesty and shape

shape isn't bad at all for a non-underwire bra

Inexpensive - $22 to $26 each

I got them at ShopCoobie.com. I received them 6 days after ordering.

Just sharing in case someone else is looking for comfort as well.

Blessings to you all!

Kidogo

I posted this on another thread earlier.

Since I’m starting radiation August 1, I thought I’d just copy and paste rather than compose another post. 🤓

M

I just got my tatts today. My surgeon said I would have 25 +5 boosts as one of his margins was close. But I'm getting 16 and my boosts will be given at the same time. 💃🏽.

He told me they had just completed a study on doing the boosts along with the regular treatment and the results weren't in yet. He repeated that several times but I figured there's no double blind with radiation. You have to use it and account for it all. And if he weren't confident he wouldn't have mentioned it. So that's what I'm doing.

We are meeting our daughter in Rome for 2 weeks in October so I'll have a month to recover. 🤞that it's long enough. However we rented a VRBO apartment and if I need a lazy day so be it.

I was told today that treatment is not based on tumor but on body size and that I have a small body therefore shorter treatment. I'm also in Canada. And I'm 30-40 lbs overweight. I told her this was the first time I had been told I have a small body! Everything is relative. 🤔

No info re diet, green tea, vitamins etc. No particular recc re lotions, just to moisturize constantly. None within 1 hour of treatment.

I start August 1.

Djt

hi all. Had the "dry run" today. First rads tomorrow. Not feeling happy about this, hope my mood picks up soon.

I saw my endocrinologist a few days ago, he said to be sure they cover the thyroid area as I have a goiter and hypothyroidism.. my oncologist Dr. said seeing as it's already underactive, not to even worry. This sounds very disconcerting to me, i hear so much conflicting info.

Also, when I met with my radiation oncologist, i ran by her a thread i read on here regarding a woman who posted about se ere blisters, black peeling skin, blood oozing, and so on. A very a larming post on a different thread from a few years back. My dr. Actually toldc me, that some cancers close to tbe skin surface require this kind of INTENTIONAL burning to rid the Cancer. So, for what its worth, or if you read that as well, I'm thankful its was deeper tissue located. And hope none of us need this type.

Djt

So, the bra issue. I have bought and returned 3 bras, not having much success with finding soft, cotton, and support for a d cup. Im an underwire wearer, and just dont know what else to try.

Does anyone actually have a brand name , style, or info that fits a bigger woman like me, and offers support? Im getting really desperate for a bra to get me through radiation therapy. Thank you if you can help.

Ingerp

If you can go without when you’re not out in public that’d be best, Djt. The ones I’ve ordered twice now are Hanes. No underwire, no padding, very comfortable.