Winter 2015-16 RADS

hi Sheri

My doc said the same as edwsmom. I was able to work through rads 28 zaps for me. Be active for 30 min a day if you can.

Hi Sheri! I worked full-time through my 33 treatments and also through my chemo treatments. I only took the day of infusion off of work, as I was at the Cancer Center for so many hours. I really do feel that it helped me, by staying active. Good luck to you!

I'm on 14 of 33 and I have worked full time since my diagnosis

I was not able to work through rads. On top of chemobrain, I was too fatigued

all: I wasn't able to work through chemo *or* rads. The treatments exacerbated the already-crushing fatigue and relentless full-body joint and connective tissue pain that I experience from Ehlers-Danlos syndrome, to the point that I basically slept through the last 9 months. I actually had to resign my position at the local casino where I worked in customer service, because I can't be on my feet for any length of time, anymore (the job required being able to stand 100% of the time). Being a tribal entity on tribal land, the casino's exempt from state labor laws and isn't required to make any concessions/accommodations for any employee.

I feel like I'm 48 going on 80–and now, I'm jobless to boot. Just fabulous.

A question for those of you who recently finished rads:

Today (in less than 3 hours) I have my FINAL rad treatment (#28 of 28) yet I find myself oddly conflicted. Part of me is so excited about letting out a big WOOHOO as I walk out of that rad center but part of me is feeling a bit apprehensive about life going forward. I don't think I've really embraced the concept of wondering, for years to come, if my BC will return. (Having ILC which is harder to find in imaging AND self-exam is also a bit daunting.) And although I'll be seeing my BS, my MO or my RO every three months for the next few years, I feel like I'm leaving a cocoon of caring and being released out into the not-so-caring world. For months, I couldn't wait for today, the day I go back to my 'normal' life but something tells me I'm entering a new normal.

Did any of you have mixed feelings the last day of rads? (I feel like I should be doing cartwheels today but part of me is a scared......)

Hi, Sunnyone. Congratulations on finishing! I finished rads about 3 weeks ago and I just felt relief that it was over on my last day (I was peeling pretty badly). The now what? feeling is just hitting me now. I think it's normal to feel this way after months and months of having a team of people telling us what we need to do to beat this. Suddenly we aren't checking in with someone every couple of weeks.

I also had ILC. A standard mammogram did not see my tumor but the MRI totally lit up. My MO is having me do both mammograms and MRIs yearly, alternating every 6 months. Have your doctors given you that option?

I am down to 2 more zaps!!! I see different techs every time so I haven't bonded with any of them but I will ring that bell so you can hear it in Florida!!!! (I'm in Canada). I was surprised that my MO didn't want to see me for three months after sending me to the RO! He put me on Arimidex with horrid reactions so my DH demanded we see him Monday. I need other options. Between headaches, bladder infections and debilitating nausea I need help. Now I won't see my RO for 3 months (saw him yesterday) but that makes sense. Not seeing my MO when I'm newly stage IV is daunting....

I get tomorrow off rads as the machine is being serviced. So I don't finished Monday - Easter Friday threw off the weeks, but I finish Tuesday. Will I be sad? No, just need some healing time. I'll be on "something" for the rest of my life as per my MO. I've been driving 225 kms a DAY (about 140 miles) for treatment then work, so I'll be glad when it's done.

Congrats Sunnyone! Tell us how you felt.

I had a thought today about why some of us burn so bad - happening to me now. I have to have a bolus put on (a thin sheet of silicone) that draws the rays towards the skin rather than deeper, hoping to keep them away from my heart and lung. Are those of us who are "burnt" the ones who had a bolus?

The blotch in the middle sort of is where my lumpectomy wound hadn't healed yet when rads started. The surgery was in January! The surgeon said it was full of cancer and wouldn't heal.

Kkubsky, as soon as I got itchy I got a cortisone cream. I figured scratching would cause blisters. Congrats on being done!! They told me I'd get worse for the two weeks after and then about a month to heal. I have had 23 out of 25 treatments so far. My back isn't any where near as bad as my front.

Thanks to all who responded to my question about finishing rads today and thanks for all the good rad-finishing wishes!

For those of you who didn't hear me when I walked out of the rad center at noon..............WOO HOO!!! (I really did yell that - right outside the door!). My rad center didn't have any bell-ringing or certificates so I had to mark the milestone in the only way I knew how.

Just for the record, the apprehension I felt before going in for my last rad disappeared by the time I crossed the parking lot to my car. I am just so danged happy not to make that trip any more. But I also think it's because daily, we're reminded of our BC whenever we go in for another treatment. I'll be happy not to think about it so much.

Because I had my boosts during surgery, I only needed the whole breast rads, 28 of 'em. I have a very dark, evenly colored tan rectangle on my chest but no open spots, no rubbed spots, no itching, no burning, nothing. I've been religious about applying Miaderm several times during the day and Aquaphur at night. (Even silvadene for one weekend but RO said I didn't really need it). So far, so good. I'm unsure how much worse the skin will get now that my treatments are finished, but I'll let you know.

Again, thanks to all for the good wishes. Here's my final, now-empty champagne flute. (28 gumballs in 4 champagne flutes - GONE! 4 splits of champagne, one after every 7 treatments - GONE!)

Congrats, Sunnyone!!! I remember when you started your rads. The time seemed to go by quickly (not for you, I'm sure). I hope that I look back at my own treatment and feel like it went by quicker than what it really seems. I don't think the place I go to does anything for completing rads. My son wasn't happy about that. He said he would get me a big bullhorn to blow as I walk out the door. Love him!

WooHoo, Sunnyone! Isn't it such a great relief to make that daily time your own again? I got a certificate and my lovely marker.

Now I'm in limbo because my MO is sending me for a second opinion about chemo. She does not want to do it, but I still do. I will be going to UC San Francisco for the opinion. In the meantime I am going to enjoy the treatment-free days.

Barbe, I will be starting my AI today. I will take AI instead of Tamoxifen because I am past menopause. AI is actually more effective than tamoxifen. According to the Onco test, my risk of recurrence is 17% with tamoxifen and 14% with AI. I am very surprised that you were not put on tamoxifen with your first Dx! Maybe because they would have had to do ovarian suppression for you back then??

The reason I want chemo is because I do not believe my tumor biology will completely respond to the AI, which blocks the production of estrogen. I have 80% ER+ and 40% PR+. And a high Ki67% too. Compared to women who have 95% ER+ and PR+, it is much more likely that some of my tumor cells will not be controlled by the AI.

Barbe, you really received substandard care for your first Dx!! That upsets me! And for your CT scan, wouldn't a radiologist read it and give the report to the onc? One or the other doc missed it, that's for sure! Hopefully now that you are on the AI, your bone met will be stable.

I do not trust my MO's opinion that chemo will not benefit me. She seems to be behind the times, especially for one so young. There are no health reasons I shouldn't have chemo, and it WILL reduce my recurrence risk. We have to be our own advocates these days.