July 2010 Rads
Is anyone starting radiation in July? I will have 28 treatments to the entire breast area. I'm scared and depressed. This has ruined one vacation and is making another one that was planned iffy. I'm not sure exactly when I will start yet. I have my CAT scan, etc. on June 30 and I think I understood them to say they will start about 5-7 days after that.
Kim
Comments
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I go tomorrow for my CAT scan so I'm assuming I will start my radiation within the next week.I'm nervous about what to expect.Good luck with your treatment.
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Hi - I've been lurking since early May - and this is my first posting. I had a lumpectomy and SNB (IDC, 9mm, Stage 1, Grade 1, 0/3 ER/PR+, HER2-) and am now ready to start radiation on Wednesday - 35 sessions (5 days/week for 7 weeks - yuck!). I get anxious if I focus on the 7 weeks part of it - so I am looking at the coming week only, and then figure I'll take it one week at a time. That's how I tackled the stuff that's behind me - one at a time, first accepting the fact that I had breast cancer (so hard to believe!), then getting through the surgery, and then awaiting all the results. I was lucky not to need chemo. Radiation is just one more thing that I have to get through in order to insure that I rid myself of this cancer. When I'm done with the radiation, I'll then start Tamoxifen, as I'm pre-menopausal. One thing at a time - that's what I'm doing and what I recommend to my fellow July-rad gals!
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Hi Kim! Thanks for starting this post! I just went for my "fitting" today. Tattoos are on, mold is made, now I wait to start on the 12th. I was awake all night worrying about it, but it went very well. Everyone was so kind and answered all my questions.
I completely understand about feeling scared and depressed. I am the most sad that my youngest daughter is leaving for college the end of August and I have to endure 33 treatments as she is preparing to leave.
I get one day off to travel with her for her orientation, then hopefullly another day off to move her into her dorm. HATE that radiation dictates my movements!I just keep telling myself it's to ensure a long, healthy life!
Kim, please come back and post how you are doing! I will be praying for you! If you have your scan on the 30th, we may be starting on the same day! Keep your chin up!
Waltersren1, you should be about the same! Good luck!
LittlePetunia, good luck to you Wednesday! Those of us who follow will look to your experience!
Good luck to all of us July ladies!
Linda
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Hi Ladies!
Thanks for posting - I don't feel so alone now. I am waiting to hear back from my doctor about putting off my start until July 19. We have a family reunion/vacation scheduled the week of July 12. I have mixed emotions about possibly putting off the start of rads since I feel I am already getting a late start (my MX was 5/17) and my margins were close, one (surface) being just 1mm and another (at chest wall) being 3 mm. So, I'm waiting for a phone call with a knot in my stomach. Linda, I understand your frustration that the rads are interfering with things that are important to us but you are right, the most important thing is doing whatever it takes to beat this.
Little Petunia, I'll be thinking of you on Wednesday. Let us know how it goes.
waltersren1, it sounds like you, Linda and I will be starting at the same time (unless I hear I can start a bit later).
Please keep in touch! We'll get through this together and then for some of us (or maybe all) it will be off to the next step - Tamoxifen. But like Little Petunia said, one thing at a time!
I'll be praying for you all! Hugs, Kim
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Thanks, Linda! I will definitely report back on how it goes!
I found the hardest part of the "fitting" appointment was laying still for almost an hour! I have to lay on my stomach for the rads (I'm a full-figured gal) - and dangle my boob through a hole in the table! - arms over my head, and head down on the table. I found myself drooling at one point, as I tried to breath through my mouth with my head in that position. I have the second "fitting" session tomorrow, and they told me that will take about an hour (the "mold" is already made, so at least that's done). I figure that the actual rad sessions have got to be better than the fittings, given that they'll only take a few minutes each.
So, I've got my Calendula lotion, bought a bunch of tank tops to wear instead of a bra under loose fitting/big linen blouses (hey, I'm gonna try it, though it might be too jiggly), and I'm ready to go.
We can all do this! I'm nervous, too - but it is non-invasive so it won't hurt, we've all had a bad sunburn so we know what that feels llike, and I trust my doctors and know that it is needed to make sure the cancer is gone. So, here we go!!!!
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Yes, Houndmommy - one thing at a time - and we will get through it!!
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Hi Ladies,
I also just went for my radiation planning today. Had the CT, tattoos and such done. I can't say I am nervous. They show you a 10minute video before anything else that will show and explain everything that will happen.
I think the two most important things to take care of are 1.) skin care - to ensure proper hydration and 2) plenty of rest when needed and lots of liquids.
It will all be okay. I am very positive and very thankful that I did not have to do chemo. I will be starting radiation next weeks for apprx 20 sessions. Fatigue will be my biggest factor as I have 2 small children. One of which is almost 2 and VERY, VERY hyper. Even while sleeping throughout the night......however...
Remember....."Postive attitude is everything!". I say this because I have suffered with anxiety in the past. Worrying will not help you heal. Smiling, laughing, talking to women like all of us and staying positive is what will keep you strong
I make every effort to live my life this way every day since I was diagnosed on Dec 23rd last year. It has made a HUGE difference.Good luck to you all. Will be sure to update on how I am dealing with radiation.
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Welcome to the group Soccerstorm38!
Kim
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Soccerstorm 38, I have said all along that I am so thankful my kids are older (23, 20, 17). Can't imagine having young ones - especially when I went through chemo!
We can all do this! Everyone keep checking back and we will support each other and get through this together!
I'm curious about the lotions, creams, etc. No one said anything to me about them today, and I foolishly forgot to ask! Has anyone been told to do any prep before you start? I have used cocoa butter on my scar (modified mastectomy), but nothing other than that!
I'm so glad we will have each other to check on!! Good luck everyone!
Linda
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My doc said I didn't need to do anything cream-wise before treatment but I have heard other folks say they have done something. I was told I would get whatever I needed when I needed it. I will ask again tomorrow. Because my one margin was so close to the skin (1mm) they are going to do more intense treatments to the skin area (I forget how he explained it) so I am anticipating some nasty skin reactions - ugh!
Kim
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I had my "planning" yesterday.Had my CT and the works.I didn't get tattoos yesterday just covered in ink marks!The areas they didn't want washed off they covered in these clear round stickers.I asked about tats and she said after about the 3rd or 4th treatment I have the option of getting them but don't have to that they redo the marks at each treatment.Anyone else do it like this?I think I will probably start next Tuesday.She said it usually takes a week to get everything ready in the computers and they are closed next Monday so I figure it will be Tuesday the 6th.She said they will call and let me know.Houndmommy don't worry I think you will be ok putting it off.I had my lumpectomy on 5/18 and am just now getting started with the rads too.Good luck to all you ladies.It looks like several of us will be going through this together.Look forward to hearing how everyone does.
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Hi Ladies, count me in for July Rads. I just finished up chemo and will have 21 sessions and then tamoxifen after that. I have my planning session on July 8 and then start on July 12. I'm a bit nervous about what to expect but with your help, I figure I can get through this as well. Cheers.
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Got a call today to say I could start my rads tomorrow or wait until the 6th.I chose the 6th because I'm working tomorrow.Glad to have the date and get this over with.
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Had my second "planning" session today - and then tomorrow they said they're taking "films" - and then the rads start on Thursday. I got 4 tattoos today (ouch!) - and then the tech using a big black marker to circle each of them to make them easier to find. I can only hope that's temporary. Oh, and I've got stickers with red marks, too. (they didn't offer me any options (or explanation) as to what types of markings I was getting)
I was not advised to use any sort of cream prior to treatment - just this Calendula lotion (which they gave me) three times a day once treatment starts.
I agree with soccerstorm - positive attitude is everything. I hated laying still for 40 minutes today on the simulator machine, but I know that the sooner I get going with this, the sooner it'll be over.
So, my lumpectomy was on 5/19 - and if things go as scheduled, I'll start rads on Thursday for 35 sessions.
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Good Evening...this is my first post and please forgive my lack of lingo. Had lumpectomy 6/24 and worst part was when they brought me to nuclear for sentinel node biopsy. I guess it was a good thing they never told me the procedure because I would probably have said..."No thank you". Anyway tomorrow I go to surgeon to remove lymph drain...get final pathology on this and next week to oncologist for start of rad plan. I learn alot just reading all your comments and feel empowered by you all. Take care and thanks for letting me vent.
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Hi everyone. I just want to let anyone interested know that I had a procedure done three years ago in lieu of radiation. There is a Dr. in Little Rock, Arkansas who is doing a clinical study.
She does RFA (radio frequency ablation) which sears a 1 cm area around the lumpectomy cavity in lieu of radiation. You have to be over 50 years of age, have a hormone-receptor positive tumor, less than a grade 3, and a non-lobular tumor in order to be a candidate for this. The tumor also has to be more than 1cm below the skin.
If anyone is interested in more information, please instant message me. Good luck to all.
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snuz1 - boy oh boy do I ever agree with you about the isotope injection. Of all the procedures I had done for BC, that one took the prize. YIKES! After my PET, the onc wanted me to see an ENT because some nodes were lit up on my parotid (salivary) gland. So he wanted me to do an ultra-sound guided biopsy. Let me tell you something ladies, I would rather have ten breast biopsies, three lumpectomies and 15 PET scans to one of those. My neck and cheek are still sore and swollen three weeks later.
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Ouch! Barbara, that does sound painful!
I finally got to see the "real" machine today so that they could take some xrays - my previous prep sessions were on the simulator. The real machine is in a room which has a 2 foot thick steel door - it was eerie when I heard the door close.
Tomorrow I start the actual rads. I can do this (I keep telling myself)....
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Snuz1 I agree about the isotope injection for the sentinal node biopsy. That was the worst!
I had my initial session today. Got 4 tattoos and lots of green marker marks. It didn't take long at all. They were going to start July 7 and then I asked about the possibility of starting July 19 (so I could go on a vacation that has been planned since January). He said waiting another 10 days would be okay (but mentioned that they normally start much earlier than this). He also talked to me again about my margins not being clear. I tried to make it very clear that I didn't want to do anything to jeopardize my health but felt like I should at least ask about the vacation. Now I am sick to my stomach and feel like I shouldn't wait. I am nearly in tears I am so scared. My rads will start 9 weeks after my surgery.
Can I rant for a minute? Several days after my surgery I got my pathology report via phone and the nurse said my margins looked great and that I should make a 3 week follow up appointment with my surgeon and also make an appt with the oncologist. Nothing was said about the radiologist. When I get to my 3 week follow up I found out my margins weren't clear at all (in 2 places and I should add I had a mastectomy so there is no more tissue to take) and that I needed to see the radiologist. I couldn't get an appointment until almost 3 weeks later. I called my nurse back and asked if it was okay to wait that long to see the radiologist and she said it was fine. So, when I had my initial radiologist appt last week he said they normally start rads at about 4 weeks! I felt like he was wondering why it took me so long to see him and I should have told him what happened but I didn't. Anyway, I feel like someone dropped the ball on me (nurse who called me with path report or surgeon ????) and now I will pay the price as my health is now even more in jeopardy. I just feel sick and like everything is now hopeless, like my chances have been compromised and I can't fix it. On top I can't believe I am waiting even longer by taking this vacation. If my rads had started when they were supposed to this vacation would be a none issue as I would be at least a couple of weeks into the rads and I never would have considered waiting. I am a mess. Thanks for listening.
Kim
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I was told that rads usually start 4 to 6 weeks following surgery - and I'm starting at exactly 6 weeks - so I wouldn't think an extra three weeks is that big a deal. I was originally going to have to wait another week because they wanted to make sure we got the Oncotype results back before starting radiation - but then the results came in earlier than expected.
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I should add that I had a lumpectomy - so I'd think with a mastectomy you'd need to allow more time to heal from the surgery?
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Hi Kim,
I know how you feel! I started treatments this week (Monday) and that was 9 weeks and three days past my wide-excisional biopsy - which came back with DCIS but with clear margins so I didn't have to do a 2nd surgery. No one ever told me there was a strict time line for this. Or if they did, I forgot it in the flood of information and statistics thrown at me there in the beginning. I have to take some ownership in that I had pushed out one week due to a family gathering in June, then the doctor was on vacation, then I pushed another three days due to my last minute panic (once I had met 'the machine') thinking I should just go get a mastectomy rather than subject myself to radiation. In the end, all four doctors, including a plastic surgeon said I should go for breast conserving treatment - so here I am. Three treatments under my belt.
I had mistakenly thought that with DCIS I had all the time in the world - only to find out here at the end that they say you should start 6-8 weeks from surgery. Shorter if you have IDC etc. I'm trying not to second guess myself for the rest of forever. The way the rad/onc explained it to me was that the statistics they provide us are based on women (at least for DCIS) that started treatment within 8 weeks of surgery. He said some patients suffer complications or infections from their surgery and have to wait longer.
Hang in there, let us know what you decide...
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Hi, One more joiner for July Rads. Just went for the ct, simulation and tatoos and ready to start 7/7. Had an open incision after my re-excision and had to wait a few extra weeks to heal, so I'll be close to 8 weeks out. Concerned with the delay too since my first lumpectomy was back in mid-april. Doc not really concerned...but like all of you, I just want to get stated and done asap. Decided on the hypofractionated accelerated schedule - 16 treatments and 3 boosts at the end. Anyone else going this route?
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Hi all - I thought I was going to be in the June group, but had to wait for Oncotype results, the score was a 19. Oncologist did not recommend chemo for me, said Tamoxifen will be my best weapon. So simulation on Wednesday and ready to go! Anything I need to be aware of for simulation? About how long does it take? Uncomfortable? And I must agree the injections for the SNB were some of the worst pain I've ever had in my life. Thank for your input!
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Hi All. I just had my third day of rads today. 3 weeks, prone, no boosts and then on to tamoxifen. I was diagnosed the end of April. 2 excisions and then an infection they had to drain every day for a week and then an allergic reaction to the bandages! But, everyone was so kind and supportive - really made the daily trips to the hospital a whole lot easier!! BTW, the shot for the SNR - worst thing I ever experienced!! How can we get them to take notice and change the protocol to include some anesthesia? Any ideas?
Spendygirl - the simulation doesn't hurt, but you might be a bit stiff/achy afterward. They told me I might want to take an Advil beforehand, which I did. They position you and take pix/scans and you end up staying still, in the same position for a long time. Try bringing a favorite CD along. I'm sure they'll be happy to play it for you.
Houndmommy - my daughter was due to give birth the end of May and they rushed my surgeries so I'd recover enough be able to help her out. (Infections and allergic reaction kinda blew that, but as it turned out, I was the only one around when she went into labor, so I took her to the hospital and stayed with her until my son in law came and I got to see my grandson being born!) They wouldn't let me wait until after the baby was born. So, my rads are starting long after surgery as well and they don't seem bothered by it. Don't worry. Go on your vacation - you deserve it - you need it. The rest and enjoyment will help you heal and get thru the rest of the journey.
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I'll be joining you all for July rads. Had my simulation Wednesday and will start rads on the 19th; 35 treatments. Had lumpectomy in December, last chemo was two weeks ago. I was not given any creams or lotions; my rad oncologist said there's nothing that can prevent skin damage and they will give me ointments/lotions as needed if I have burning and that if I have real problems with my skin that she will do a "break" if necessary. I'm hoping that I can get through it without a break, seems it would be more effective.
All the best to those of you that will be starting next week.
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Hi Everyone,
Well, I decided to go through with the vacation before rads. So instead of starting July 7 I'll start July 19. I am hoping that if the doctor really thought it was a bad idea he would have said I shouldn't go. My mom called the docs office and spoke to a nurse and she didn't actually count weeks - my surgery was 5/17 and my rads start 7/19 so the nurse said I was only going over by 3 days. I don't know. I've calmed down a bit since this morning. I just keep thinking the doctor would have said not to go if it were truly a problem so I am holding on to that. I don't think I would be so worried if my margins were clearer. I'm going to try to really rest and relax to prepare for my nearly 6 weeks of rads. I don't know that I will have access to the internet so I can't check in but I will be thinking of all of you. Good luck as you start this part of your journey!
Hugs! Kim
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I'm a July rad starter, too! I'm still healing from my lumpectomy. I have a hematoma that we're waiting to go down. It's a slow healing little bugger. I have my rad consult the week of the 12th & then if I'm healed enough, it'll be a go for radiation. The ironic thing is that I'm a Radiation Therapist! My boss is my Rad Onc & my co-workers will be treating me! It's a long process (I have to do 33txs), but it's painless & so quick. I can do it while I'm at work, but a lot of patients are trying to juggle full-time jobs & kids, so I hear their frustration with having to come to our clinic everyday. All of the them say that the 6wks goes sooo quick. I'm trying to plan a celebratory weekend away or something when I'm done.
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So happy to see so many people joining our group! We will all get through this together! I feel like I'm in this happy place between the end of my chemo (2 weeks ago) and the start of rads (2 weeks away)! Wish it was all behind me, but I know I have to do it! Good luck to everyone! Houndmommy, I'm sure the docs would've talked to you if your gap was a problem. Keep your chin up! You will be fine!
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julieeee - hope you're healed up soon and good to have someone here that has experience with this from the other side of the steel doors.
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