Rads planning session: I'm SCARED all of a suddden

Anonymous

Hi all,

I'm new to this forum but this is where I'm headed next.  Tomorrow I'll get #11 of 12 weekly Taxols, and following that I have a radiation planning session to get ready for 6.5 weeks of rads.  I'm a little scared all of a sudden: I know that a CT scan will be done, and I'm worried that something else will be found that wasn't there before. My PET scan was clear in Oct...but...I'm worried about this new test.

I'm grade 1, stage II, ILC, 6/ll nodes, 2 cm with clear margins.  I got AC DD and then 12 weeks of Taxol. Dx 9/29/11. Starting tamoxifen after chemo--I already have the prescription filled and ready.

I had lumpectomy but will get bmx/recon about 8 months after rads.

Any reassurance would help.  I finally thought I was developing a rather blase attitude towards chemo and tx in general, but when I think about tomorrow my heart starts pounding and I feel pretty apprehensive.

Thanks to all who can respond! (and I can't seem to believe my own signature quote below!)

Claire

Elizabeth1889

The beginning of rads can be intimidating for everyone, especially if you have recently had chemo because by the time you get to rads, you are tired of the whole process.  Just remember that the rad techs are very well trained and everything is planned precisely.  The CT scan is to plan your rads treatments, not to look for more cancer. How you do feel about using tatoos to mark your rads fields? Some people, myself included, get very emotional about this issue.  Speak up if you really do not want to be tatooed.  There are non-permanent ways they can mark you.  If possible, bring someone with you for the simulation.  They cannot be in the CT room with you, but it can be an upsetting experience and seeing a friendly face at the end helps a lot.  Be sure to do something nice for yourself that night.

Ask your RO what moisturizers he wants you to use and then moisturize, moisturize, moisturize. Just be sure to wash everything off before you get each rad treatment.  Take everything one day at time.  It helped me to mark a big red "X" on my calender after each session.  Rest whenever you can if you get fatigue.  Fatigue, unfortunately, is a common rads side effect.  Vent here whenever you need to.  We are always here for you.  Good luck.

mary7

Hi Claire,  I just finished my 33 radiation treatments in December. I did not think it was too bad at all.  The planning part made me a little nervous, but you'll soon get into the rhythm of going every day.  My only advice to you would be to go to some physical therapy while you are having radiation.  My RO advised me of this, but because of insurance reasons, I never made it.  I now have some pain in my breast and some tightening in my breast and underarm. I think PT would have helped a lot. I also started Tamoxifin January 1st.  So far no side effects!  Congrats on finishing Chemo!

mary625

Claire:  I also have ILC, about the same tumor size, but had my chemo prior to surgery.  I just had my radiation planning session (actually broken into two sessions) last week and yesterday.  I don't think the CT scan could possibly detect any cancer because they don't use the contrast.  I had the type of CT scan that is looking for cancer, in lieu of the PET scan, very soon after diagnosis.  Basically, the CT scan is looking for the position of your important internal organs like heart and lungs.

I was also nervous at my planning session and today at my first treatment, primarily because they kept doing things without explaining.  My physical therapist, who probably should also be my psych therapist, tells me that I am not speaking up enough about wanting some word of warning before people touch me or the machine moves. I was especially sensitive because I'm five weeks post BMX and it can be difficult to get my arms over my head.  But in hindsight, it was all pretty bearable.  I would just encourage you to speak up if you need an explanation as the rad techs can move pretty fast to keep the patients flowing.

I know exactly what you mean about the blase attitude.  I have taken both chemo and surgery in stride, with many remarks about how well I'm handling it.  I was expecting to slide right into radiation, but I think it is the daily visit that's somewhat overwhelming or depressing after the months of other treatment.  I can't really put my finger on it, but I think it's the daily visit.  I'm also adjusting to Femara right now too, with skin necrosis on my prophylactic mastectomy, and sometimes it's all too much!

GiGiL

Claire, I was so worried about my planning session.  When I went and they took time measuring and adjusting, they talked to me the whole time and put me at ease.  I got three small tatoos - one in the middle and one on each side.  I hardly felt them at all.  It was relatively painless.  I thought I would feel stronger about them, and in fact did until the day they were done.  They are just tiny black dots, and now when I look at the only one that I can really see, the one in the middle it seems of little consequence at all.  After they did that, they took me into the CT scan room.  The scan was done without contrast, so it was basically me lying on the table, being adjusted to the right spot and then a halo type hood, passing over me.  It was over quickly and then the planning session was over.  The weekly treatments went fine.  The techs were chatty and caring and made it bearable for me.  When I had my last treatment they gave me hugs and told me to come back for coffee sometime.  I brought them treats to thank them.  My skin struggled a bit the last few weeks.  Emu oil and aloe helped tremendously.  I was quite healed in two weeks, and completely healed in a month.  It was no walk in the park, but it was definitely do-able.  Hope this helps.  Take care - thinking of you.  GiGi

GiGiL

Claire, I should also mention during the planning session I laid on a mat with my arms over my head.  They inflated the pad, which became a mold that I laid in for each treatment.  it helps to hold your body in the exact correct position each time you go in for treatment.  They ask you not to lose any large amounts of weight during your treatment phase, so your mold will continue to place you correctly.  

WIMusicMaker

Dear Claire,

It is totally understandable to be scared! With every new treatment we question how will our body respond to it. I had AC chemo also. Rads were WAY easier than chemo. The planning session is just to make sure everything will be lined up so they aim the radiation exactly where it needs to go. My techs were some of the nicest people I have met in my life. The nurses and docs watch your skin carefully and have solutions for all skin problems. Make sure you let them know when you notice a change in your skin. Use the cream they give you and put it on as often as they tell you to. My skin got really red under my breast towards the end of my full breast radiation. I used the Aquaphor they gave me and then put a soft sock under my breast. It really helped at night. I also tried to take my bra off as soon as I got home. I was scared the first day I went too and soon it just became so automatic I didn't think much about it. Then yesterday, my last day of rads, I cried when as soon as I entered the hospital and throughout my treatment-tears of joy and relief. The 33 rads went fast and soon you will have this wonderful feeling of relief of finishing. I wish you the best. Mary

Anonymous

Thank you ladies! 

I should have mentioned that my husband died of cancer 16 years ago...we had only been married 4 months.  He was getting tx for his cancer before we got married, a very aggressive tx, and when he was halfway through radiation tx they found out they weren't giving him the right dose in the exact right place...we thought it would be okay and he finished tx but 6 weeks after we were married he was dx with untx cancer...so I'm understandably really scared about going through this.

They didn't tattoo him or anything back then, so I'm glad I'll get some permanent markers on me. Thanks also for the info about the CT scan--I didn't know about different kinds.

I'm so PTSD about his sudden death that I won't get my rads in my hometown, where he got them. I'm going 30 miles south of here even though its overseen by the same facility. Can't lie on the same table he did-and feel safe and trust the equipment.

I'm sure I'll be posting more here soon...I feel better now that I've read these responses.

XO

Claire

Elizabeth1889

Claire, I am so sorry that you lost your husband so soon after your marriage.  Of course, you would be frightened about rads.  It is a good idea for you not to go to the same facility as your husband.  I hope rads treatments have become more precise since your husband's time.  Wow, you are carrying a heavy burden.  We are all here for you.  Like we say, we will be in your pocket during your rads so make sure you wear a big one.  Sending hugs to you.

GiGiL

Claire good for you in taking action to direct your own care. They seem to have come a long way in being specific and precise in the treatment of breast cancer while doing as little harm as is possible. How painful for you to lose your husband so soon, and now to be battling bc yourself. Six months after I married my husband 33 years ago, he was diagnosed with testicular cancer. He was very lucky to catch it early and is cured. I hated cancer then and I hate it now that I have had to deal with it. Please come back here often, and the wonderful women here will be there to support you every step of the way, myself included. Take care, GiGi

Anonymous

Hi all, thanks GiGi for sharing that story. I could not believe that 16 years later after losing my husband I'm going through what he did, right down to the same MO and the same drug (they gave him Taxol, a kind of hail mary pass, at the end of his life, but it didn't do anything to lengthen it).

Dear all, I got planned and scanned yesterday and 5 tatts all around my boob. It was kind of a non-event and thanks to you I wasn't nervous--didn't even have to take a Xanax. B/c of my node involvement my clavicle lymph nodes will be txed too. I'm mostly worried about developing lymphedema--my RO said I have about a 15% chance.  I hope I'm in the 85% chance, I need a little break at least!

Anyway, the tatts were painful--worse than being hooked up to my port!  But it only lasted a second for each, and I'm glad I have them.   I'm going to tell everyone that they are a picture of Mercury, Venus, Earth, Mars and Jupiter--as seen by God

I start April 11 and start Tamoxifen April Fool's Day. I'll probably be checking in on that forum at times too, but I hope I'll breeze through both.

Thank you rad ladies--I'm soon to be one of you, too.

Claire

financegirl

I finished radiation the last day of January 2012.    Don't fear radiation  - - myself and two others there at the same time all felt chemo was worse.  We all began and ended radiation around the same timeframe.  I am now on Arimidex/anastrozole.

How sad you lost your husband so soon and of course you are afraid.   The Radiation Oncologist described in detail what would happen and when it'd begin and her predictions were pretty spot on.  She said anyone fair complected begins to feel the burn about week 3.5, and others about a week later.  About the time the area hurt, it was time to switch to my "boost" (when they only radiate  the area the tumor was originally found) and it's very quick.  The last week of treatment and the week after hurt but I was given things to help and the pain seemed to go away as quickly as it came.  You'll do fine. Chemo exhausted me, never found that to be true with radiation and I found that I was able to resume more of life activities during radiation until the last two weeks.  Also bounced back much quicker after radiation also.