April 2018- Starting Radiation

LiMa66

So, who else is starting radiation in April? I met with my radiation oncologist last week and now I'm sceduled for my simulation on April 3rd. I'm glad to be doing it, or at least I'm telling myself that now. Chemo was not deemed necessary but I felt I should be doing something in addition to the Tamoxifen so it was almost a relief to hear the RO say he agreed, especially with the 2 positive nodes with extranodal extension. I've already picked up the Aquaphor, plan to add some aloe vera or calendula cream also. My RO suggested Miaderm and said he'd give me some samples, but it's a bit pricy so I'm hoping to avoid needing it.

Those of you also starting in April, jump in. Let's give each other some support and encouragement. Best wishes to you all.

ctmbsikia

Count me in.  Anxious to get it over with. I'll be doing 30 treatments starting this Wed. if everything lines up OK.  I have (2) worries but not enough to say I won't accept this treatment.  1-Skin holding up.  2-NBN variant gene.  

Best wishes!

LiMa66

ctmbsikia- I agree, let's just do this and get it over with. My RO ordered 25 treatments to the chest wall and lymph nodes (including sub-clavicular) and 5 scar boosts.

We can do this.

AgathaNYC

Hi, ladies. I'm in, too! Thanks, LiMa, for starting this thread.

I'm going to have my simulation on the 5th, and probably start radiation 2 weeks later. I'm in for 16 treatments of whole breast radiation + 4 boosts of the tumor bed. No nodes being irradiated.

Anyone else doing radiation in the prone position?

Only things that my RO team warned me to avoid were anti-oxidants in my supplements and lanolin in my moisturizer.

Good luck, everyone!

poliwogli

Hello everyone. I am seeing my radiation oncologist tomorrow for the first time, and expect I will be starting radiation in April. I've been reading through the March thread, where I got a lot of good information. Still so many questions and uncertainty!

Pleased to meet you all, though wish it was through other circumstances.

rgoossen

I'm jumping in the April pool of radiation. I had my simulation, will begin therapy on April 2nd with 33 treatments

LiMa66

AgathaNYC, poliwogli, and rgoossen: sorry y'all have to be here but always glad to "meet" fellow Warriors. Stay strong ladies. We've got this.

Bbccats

Hello everyone. I had my first appointment with my radiation oncologist today. I will have my planning session on April 3rd and will likely start radiation 2 weeks later. I'm having 25 treatments. I'm happy to have found this group.

rgoossen

Bbccats welcome to the group.

LiMa66

Hi Bbccats- welcome and best wishes to you. My simulation is on the 3rd also. Sorry you have to be here, but glad you're here with us.

poliwogli

Hello to everyone and welcome Bbccats! I am guessing you have cats, yes?

Okay, so I saw my ro for the first time today. My cancer was very early stage IDC, with clear margins and nodes. It consisted of two tiny tumors (1mm and 2mm) right next to each other. Because of that, the ro is recommending two options. The first is, 3 weeks of hyperfractionated whole breast radiation. The second is to take part in a study in which I would receive 5 days of partial breast irradiation or 3 days of partial breast irradiation at a higher intensity. The partial breast radiation targets the place where the tumor was. They think I'm a good candidate for the study.

I would have an MRI every 6 months for two years - my tumor didn't show up in the mammogram or sonogram, but was seen on an MRI. I'll also be starting tamoxifen after radiation.

They explained the history of both options, how long they've been doing it, what the follow up studies have shown, etc. Both are really short duration. The partial breast radiation delivers less exposure to organs, plus the skin side effects are easier, and the time is shorter. I'm concerned about a few things and looking for more information online.

Bbccats

Thanks for the welcome!

poliwogli: Yes I have cats...three actually. Bellini, Bella and Caesar ...hence Bbccats. My cancer didn't show up on mammogram or the 3D mammogram either. It only showed on MRI. My mother's cancer never showed up on mammogram either. She found them each time herself. She lived for 22 years after her initial diagnosis.

poliwogli

Hi Bbccats, I have three indoor cats - Toby, Batman and Sasha.

ctmbsikia

Poli-Hello.  Just read an article on this site where they are changing the standard for some in regards to radiation therapy.  It's sort of good news (cause none of this BC is!) that you're a candidate for the partial-good luck to you.

Went for simulation/1st treatment yesterday.  I will be doing the breath holds.  As I was doing them they were getting a different mark each time right between my breasts which was explained  is leaving my right breast in the field.  Doc didn't like it either so we will try again today. I was discouraged and po'd that they were running behind and I was there for over 3 hours, however- I'm over it!

Now that I've been in the actual room and know what to expect things should go much better today.

Okkate75

Hi, everyone! I go in for my simulation tomorrow morning and will start treatments April 12. I wish everything didn't take so long as I just want to be done! I'm having 16 whole breast treatments followed by 5 boosts to the tumor bed. I'm anxious about what it will mean with my genetic mutation--CHEK2--but trust my doctors and the plan we've got. There so much we don't know, and we have to leap into the treatment zone anyway. I look forward to walking this road together. Thanks for being here!

AgathaNYC

Hi, Poliwogli - I'm interested to hear if you are going to go into the trial or not. Best of luck on your research to help you in making the decision. Are you being treated here in the city? I'm at MSK.

I have my simulation in a week. I'll be treated face down and the nurse mentioned they'd be making a body mold to help me stay in position. Has anyone done this at their simulation for the prone position? Just curious what area of the body is molded. Also, the tattoos are on the back and side, right?

I've been moisturizing 2x daily in preparation for radiation, plus just added calendula oil to the mix. Hoping to keep radiation skin damage to a minimum.

poliwogli

Hi ctmbsikia. Good luck and hope your next session goes well. I'll look for that article, thank you. My ro says that new guidelines, issued about a week ago, will mean shorter radiation for most everyone. Some good news, and hope it is implemented soon.

Okkate, this process does move slower than expected, yes? You are so right about taking that leap of faith. Hopefully, once we start it will be less mysterious. My simulation is this Monday and I start treatment on April 16th.

Hi Agatha, I'm being treated at NYU Langone / Perlmutter Cancer Center. Still thinking about the trial. The 5 day procedure has a longer track record, and seems that they are getting good results. The 3 day is newer. Since I would not get to choose, I'm a bit concerned about the shorter procedure. The oncologist told me that with the 5 day, women get through the week with very few skin issues, but mild side effects arise a few weeks after. They've seen similar results with the 3 day, but some women have more redness after two weeks, but if it happens, it can be treated. They are also comparing other side effects.

I haven't seen anyone mention a body mold, sounds artsy craftsy! Let us know how that goes. Moisturizing now is a good idea, especially with the dry winter air.

MHerzberg

I am wrapping up my last 2 doses of Taxol on 4/12. Meet with my RO on the 17th, to get our plan of action together. Don't yet know what I'm in for yet, but ready to get started and finished.

LiMa66

Okkate and MHerzberg- hello and welcome.

So glad to have all you ladies to commiserate with as we take this next step in our treatment. My RO did not mention a mold but he did draw us a really cool diagram and encouraged me to continue drinking wine. That's one doctor's order I'll gladly follow. When he saw my info he said "oh crap, you're a nurse....guess I'd better be good." Then he followed it with the wine comment. Well played Doc.

ctmbsikia

Well my 2nd simulation didn't go well.  RO scraped my plan and said start over with new plan. I-yes me, the patient, then asked well how about another position?  He agreed.  I am so glad I spoke up as he would have had them put me through the same plan again on my back, doing  breath holds that just failed.  I went back in this morning and got molded and planned for the prone position.  The nurse said I was the best patient she ever had.  Pics are now off to the physicist and my next simulation is Apr 11th possibly sooner.  Have a Blessed Easter everyone!

marleigh

Hello everyone -

I decided to join the April group. My radiation actually started yesterday but since it's only two days in March (yesterday and today) I came here. Since I've started, I'll go ahead and post what my experience has been thus far. I've been reading the other treatment threads and it's amazing how different the ROs are from patient to patient!

DIET: My RO said I don't have to be on any kind of special diet, no increase in protein, etc. Just to make sure that I eat a balanced diet.

SOAP: My RO said there was no special soap I had to use. However, I am not to wash the area with a washcloth. Just put soap on my fingers and gently go over the area. Then take a soaked washcloth and squeeze the water over the area to rinse it. Never to face the shower, instead I am to put my back to the shower. I thought liquid soap would be best for this process rather than bar so I bought some liquid Ivory soap. Even tho he said it didn't matter about soap I still decided to go with a mild soap for that area.

CREAM: I am to use Lubriderm in the morning after my shower and then Aquaphor after treatment (when I get home) and then at bedtime. Since the Aquaphor is so greasy I bought some men's 100% cotton t-shirts from Walmart to wear when using it - thus I sleep in that shirt as well. If these don't work, they will give me Miaderm (they provide it, I don't have to buy). My RO feels very confident in the Lubriderm and Aquaphor and said he rarely has to pass out Miaderm.

TATTOO: My center does not use tattoos. Instead they marked with a magic marker then put tape over that. They said they have not used tattoos in several years.

DEODORANT: On the side I'm getting treatment, I am to use pure corn starch. No deodorant whatsoever. I can use deodorant on the other side if I want to, but not the treatment side.

PROCESS: the way mine goes is: I check in at the main desk when I arrive, but I don't have to go into the main waiting room anymore now that treatment has started. Instead, after check in, I go straight to the women's dressing room, change into a gown, then sit in a women's-only waiting room (which is very small, only 4 chairs and a TV are in there). I was in the women's only waiting room about 10 minutes. I wear glasses, a ring, and watch and don't have to remove either of them. Nor do I have to take off my shorts (it's warm here now) or shoes, just wear the gown, turn it around to open in front so that I can easily remove my arm for the treatment. My legs were propped up at the knees, and I put my heads over my head - each hand held onto a handle (like a bicycle handle). They did 3 different treatment positions with the machine and the whole process took about 10 minutes. Most of the time was them setting the machine to how they wanted it, putting a bolus on, walking in and out etc. I didn't pay a whole lot of attention to time in as far as actual beams from the machine but guessing it was probably about 2 minutes total of actual treatment. 

My RO said most of his patients experience some fatigue and redness. Most of the redness complaints are in the armpit area due to the fact there is friction there from you moving your arm as it rubs against your body plus the friction caused from a shirt.  But he said he has a large percentage of patients who have zero fatigue (hope I fall in that group!). But all of them have some degree of redness he said.

This morning I have no signs of redness yet, but I know it is coming of course. My treatments are every afternoon. I will have 35 treatments so I have a long way to go. 

I am soooo ready for all of this treatment to be done!

Bbccats

Hi Marleigh, Welcome to the group! Thanks so much for giving us all that information.

poliwogli

Welcome, Marleigh. Thank you for taking the time to describe your treatment. It really helps!

Okkate75

I had my simulation this morning and was prepared to be there for hours. Happy to report I was in and out in 20 minutes! Amazing! No part of having cancer has been quick or efficient, so I'll take it. I got marked up with stickers over the marks AND tattoos--lucky me. It was painless, and now NO APPOINTMENTS FOR ALMOST TWO WHOLE WEEKS. That is amazing to me, and I'm pretty excited about it. I'm really getting my energy back from chemo, and I can see lights at the end of the tunnel, for now. I'm very grateful. Good luck to all of you!

19501952

Hi Everyone,

I have my 8th and final CMF infusion on April 9 th and I’m seeing my RO on April 12th. I’m told I will begin radiation at the end of April, beginning of May. I’m going to have 16 treatments. I don’t have much detail about what exactly will happen. I’m going to be happy to leave the chemo pods and I’m looking forward to getting radiation done and over. When I was first diagnosed way back in September the plan was lumpectomy and radiation but my oncotype score of 26 changed that plan.

I’m glad I found this group. Good luck to all of us.

Kate

HopefulAC

Hi all. I’ll be going in for mapping on 4/9 and was told I’d start on 4/16 for 28 sessions:) ready to start this and end it!! I read through the thread and wanted to thank everyone for the info.

Dodgerick

Hi everyone! I just found this site yesterday and I'm so excited to be able to find others to relate to! This has been a scary journey! Now that the mastectomies surgery is done, doctor says no more surgery to remove additional lump nodes (yay), oncotype DX came back with a low score of 17 (no chemo, yay!)...I expect my radiation treatments will probably begin in April too! I just would like to get these expanders filled so I can get radiation over with! (I've only had one fill since surgery). Does anyone know anything about radiation with expanders in place?

AgathaNYC

Hi, Dodgerick - I'm glad you found us. Seems like you've had some good news on the surgery and chemo front. I don't have experience with expanders, but just wanted to pop in and welcome you :-)

LiMa66

Dodgerick- Welcome. I have expanders currently. Got my last fill this past week. My RO didnt seem concerned as I'm not overfilled, said my skin looked good. For now. My PS said I'm to go back 3 months after my last radiation treatment and he'll assess. He typically waits at least 6 months before moving forward with the exchange process. Yay. So maybe by the end of the year if all goes well. All I want for Christmas is my two implants....

HopefulAC

Hi Dodgerick. I have expanders and the only thing that took me off guard a little was that my RO ordered that the breast not being radiated be deflated by 50% so it doesn't get in the way. I do have a prescription for a prosthetic to wear so I look normal in clothes. After I finish in May they said they can fill it back up (it'll probably take a few fills bc they've been painful for me).

My plastic surgeon told me he waits 6 months after radiation for exchange surgery too. Like LiMa66, all I want for Christmas is my 2 implants

metoo2018

Hi all,

I am in the March group - started my treatments on the 27th but most of them will take place in April. In the March group I was behind everyone else and did appreciate all the info from those that went ahead of me. Maybe I can do that for this group a bit too. I will likely read both groups while still in treatment.

Treatments last less than 5 minutes it seems. From the time I go in, change, get my treatment, slather on the lotion in the dressing room (Thera), get dressed and get back into the car it is generally 15 minutes. They did make a mold and I fit into it each time then they move me around a little on the table lining me into the right position. They leave the room, the machine starts on the left and then moves over to the right - a bit over my shoulder so I no longer see it. I figure the beams are going across body to my right breast and then from behind again across the entire region. It is painless but I still find myself breathing rapidly when it all starts, maybe less as the days go on. So for those of you that hold breath - I am in awe, I don't feel nervous and yet I can't control my breathing while it is all taking place.

4/20 treatments in and no reaction yet. I of course imagine some itching, some pinkness but I think it is because I am looking for it. The Thera cream is very nice - not greasy and at all. I use it twice daily and will likely increase to 3x daily as treatments progress. I use Tom's deodorant - no aluminum which is the issue with RADS. I don't put it on the treatment side until after I get home. They said no shaving on the treatment side if the underarm is being treated. I am still a little unsure if mine is or not - another question I need to ask! I see much more of the technicians and little of the RO each day. The techs are amazing - gentle, kind, and understanding that this is all different for me.

Once a week (today) I will get some extra pictures and meet with the RO to see how treatment is going. I am wondering how they know? I hope can find out.

So if there are questions I can answer I certainly will try to. Hang in there- everyone will have ups and downs throughout. Hoping everyone flies through the month and can get on with their lives!