Summer Rads 2014

aff

Amelia - I have a mold too. It keeps me in the same position as my simulation so daily set up takes no time. 

My MO told me there were 3 common SE for Tamoxifen...hot flashes, mood swings, weight gain (only 5lbs, anything more is on me) and 2 things to be aware of...blood clots and uterine cancer so to be sure to see my gynecologist regularly and not to miss a check up. Scary but they are both rare. I have heard many ladies on these boards talk about hair thinning. 

paloverde

Yea Sam2U!!!

paloverde

Susug, will pray for you.  I'm BRCA2 positive.  

Susug

Thank you palverde. If I am positive does this mean I will need mastectomies ? From what I understand if am my chances of other BC are 80 percent chance 

3rdtimenow

Victorialee, I had that type of radiation 3 years ago, its called brackytherapy, a device is inserted in the lumpectomy site, very painful, I thought. You go twice a day for 5 days and they hook up the wires that are left on the outside of the body to a machine that delivers the beads of radiation and then are removed. I had it in for 7 days. Quicker for sure, but I really hated it, works for some I guess. My radiologist said since it does not do the whole breast, it does nothing for the skin, that maybe why my cancer is back, even after mastectomy, because there might have been tiny cells left behind in the skin. It's all a crap shoot and we have to hope for the best outcome. Stephanie

jhodro

I had my simulation today. I ended up being there just 40 minutes. There are lockers where you put your stuff while you change into the lovely gown, which you don't get to keep for long anyway. Then they handed me a little hand-towel sized cloth. LOL. Not a good exchange, in my opinion. Then you get on the table and they did the mold with both hands over my head, not terribly uncomfortable, nice and warm for the cool fall day here in MI. I was happy to hear I was face up, unlike my MRI's have been face down. They did 4 mini-tattoos and put some sticky sticky tape. The only stick that was uncomfortable was the one in the center of my chest over the bone. I also joined a research group to help them figure out how to standardize radiation care - and improve it. It involves before and after pics, so I said be sure not to post this on FB or Insta!! One thing that was a concern - advice not to wear a bra. Seriously? I'm an overflowing D cup (one side anyway)…I'm pretty sure I can't go out in public like that, let alone to the office. That should be interesting.

Anyway - that was my first experience with RO. I think I can get through this.

Congrats to all those who are finishing up! Enjoy the rest of your summer.

Crazywabbit

Rosie, DH is retired radiologist.  Not radiation therapy.  Do not know much about the TOMO RT. 

3rdtimenow

Hi Jhodro, I have been wearing a bra up until today. I am at 16 of 33. Starting to have some redness and pain in the underarm area. I just went to Kmart, but I think Walmart and Target might have them also. I picked up a few Route 66 tanks with low cut armholes and an extra panel with elastic for some support, it's comfortable, hope this helps. Stephanie

Sunshineinky

Jhondro I'm an overflowing D cup on one side and a solid C on the other.  I bought an "ahhh bra".  It's an as seen on tv item.  It was much more comfy and supportive than a regular sports bra.  I also bought a seamless Bali bra. There was just no way I could go without a bra in public! 

rettemich

Wow I was gone one day and the whole thread blew up Glad so many of you have joined this little club that no one wants to be in. Welcome to all the new "faces". This place is the best. 

Pain after treatment was an issue for me also. I had some major pain issues especially toward the end. My RO kept telling me the rads didn't cause it. Well 3 weeks out and funny the pain dropped dramatically about 4 or 5 days after I ended. 

The rads that were mentioned is the Brachytherapy. I would have had that if I hadn't had the mamaplasty. Yes it would have been one week twice a day. But I don't regret my mamaplasty decision, at all. 

sunshine, oh may we have to stop meeting like this. One of the biggest thing I talked about to the IO was the fact that my hair was coming out. And I don't have that much to begin with. I told him at this rate I will be bald in a year. Why can't there be Good side effects????

Take care everyone

lyzzysmom

Macintex and Amelia, What a pain! We all look forward to our scheduled end date. The machine where I go broke twice but they worked past their normal time and crammed most of us in later in the day. One older lady told me she was on the table when the belt broke and she was stuck under the machine for an hour. She was very uncomfortable and upset that day. Not quite sure how that happened as there is space to wriggle off but perhaps she was not flexible enough or was in an odd position. I felt so sorry for her.

I think a lot of us break it down between whole breast and boosts. Only 2 to go and then 5 boosts. My skin has held up well but my nipple is a bit sore so looking forward to that area getting a rest (I hope) as the incision is high up at 10 o'clock.

Sunshine, Sorry you are getting this hair loss. The literature seems to put this in the less common list of side effects but sounds like its very common to me and it doesn't seem there is much that can be done about it. My scalp has lots of scarring and even the MO commented on my thin hair and he is used to seeing ladies who have been through chemo. It also got worse during menopause. I look really balding at the front so always have bangs but much more hair loss and I will need a wig permanently. I do already have a couple. One is red and spiky. People either hate it or think its really cool! They sure are hot to wear all day though!

OT This reminded me of how insensitive surgeons can be sometimes. One of mine was doing his rounds with some students. He stopped at my bed and said something like "this patient had what was like a facelift on just one side so it looks ugly" . I was too out of it to come up with a quick retort like "I may be injured but I can still hear!"  Years later it makes me chuckle though!

lyzzysmom

Oh Rettemich, not your hair too? I think I may ask for Femera generic as loss of appetite is a possible side effect and DH keeps putting so much candy in the refrigerator. He knows I can't resist when I see it!!

When I originally saw the MO he mentioned the possibility of doing the Canadian style?? rads, only 3 weeks but I completely forgot and got the 33 days.

3rdtimenow

Sunshineink and jhodroh, I also love the ahh bra, you can get them at Walmart and Target, they work great to give you contour with the inserts if you don't have nipples. I find them uncomfortable now to pull on, but can't wait to get back to wearing them. I love them.

CoastalXPat

Hey so yesterday I finished rads - hooray!  Thanks all of you for the encouragement & kind words. 

So now I'm in this weird post-rad place. My treatments are far from over since I'll be getting Herceptin through next March, and then it's tamoxifen/AI's for 5-10 years. But the hardest parts are now done, especially the all the driving to and from the hospital and work, knowing I'm adding to skin and other effects, etc. I had tegaderm over sharpie marks instead of tattoos, so it was great moment pulling those off. And I am so looking forward to getting my life back. 

All the same I have to be honest, it doesn't feel like it's over at all. I can't figure out if it's because recovery from rads does take some time, or maybe because treatment has become a way of life...or maybe it's fear of recurrence. I don't know. 

But I've been thinking of it this sort of sci-fi/comic-book nerd way: I've been blasted with photon torpedoes, I've drank poison, I've given up a piece of my intimate flesh, and I live with an implanted tube that can send chemicals straight into my heart. Well then it's only logical, I must have some sort of superpower by now!

To all who have ended up here I send you my warmest wishes of strength and peace. We can do this!

Crazywabbit

jhodro  i am 2 weeks post rads, and skin is looking great. Even the dark red spots the look like in every hair follicle around the breast have faded.  I wore my regular bra every day, the Bali bras that I got from Kohls. Seamless with soft cups, sold by size small, med , large etc.  I bought two sports bras that snap in the front and a few cami tops with shelf bras, really never needed them. Once I got home from work I just went bra less.   I remember how much the tat on the breast bone smarted. 

CostalXPat. Congratulations on finishing up. Love you SciFi analogy. It was weird going to the infusion center yesterday. I have stopped by for a port flush but this time I got a zometa infusion.  The port flush or blood draw is in a regular chair  just inside the doors.  Sitting in the actual chemo chair again brought back bad memories. At least it was a 15 mini fusion and 10 min flush.  Over quickly. The volunteer cam buy and asked if I wanted to order lunch and I told her I would be gone in another 10 minutes, so no. 

I still love my port, no discomfort and saves my poor hand and arm from getting stuck 2-3 time to get a vein. Having an lumbar MRI tomorrow and will get port accessed just before it for the Gadolinium dye.  Hoping my intermittent numb foot is disc disease.  I had disc  surgery about 20 years ago for similar symptoms on the other side.  

Best wishes to all those in the middle of Rads  weekends are wonderful to rest up 

Rosiesride

21/25 whole Breast done...then 5 boosts...skin should hold up!

I told my sister I am realizing how going back into " the real world" outside of my bubble of family and close friends, has been interesting.  I just don't know how I am going to tolerate " whiners" and hearing people complain about trivial things....after being on this journey for the past 7 months.  We have a special imaginary cup to hand people like that...a cup of " I don't give a sh--"!  I really think it's going to be hard to listen to that blahblahblah...perspective on things sure has changed.  Good luck to us all!! Rosie

Sunshineinky

Rosie that's something I've got to work on.  People don't know what problems they have until a major one hits! I've struggled really hard with it on Facebook.  People complaining about really trivial stuff and I'm sitting here thinking what the heck.  If the only problem that you have is the squirrels are eating your bird seed you're a lucky woman. 

Barbara I finished rads right before you and I've got about a 1.5 inch hard spot in the crease of my breast on the side closest to the breast bone.  My RO said it was scar tissue from rads.  I ran into a friend that's a surgeon today and seized the opportunity and let him look at it too.  He agrees it's scar tissue.  Wonder if it'll go away? 

Bets65

Hi All, just new to this group.  9/25 in and so far so good.  My RO recommended using Lubriderm (unscented) and applying it multiple times daily.  I'm very fair and see a bit of redness after the rads which disappears by the next day.  So, so SO glad chemo is over :-)  Started on March 21st, last was on July 4th then started rads on July 21st.  I'm really tired after my last chemo and am resting/sleeping as needed.  Some of the tiredness may be from the rads???  I'm just grateful I can sleep when I need to.  We have a backyard pool which I'm allowed to swim in but the RO suggested I not swim in a public pool or a lake this summer.  Being super careful about the sun this year and love all the earlier posts on the spf shirts - great idea!  I'm starting to get some hair growth - still peach fuzz and very light but so excited that it's coming in.  Maybe time for a fauxhawk in a few weeks lol!  

Happiness and joy to all. 

Crazywabbit

sunshineinky, really hope the scar tissue softens up over time. 

Welcome to all the newbies. Time goes by faster then you an imagine.

Debster

Rosie and Sunshineinky I am right there with you about the whining and complaining about things that don't matter. I have to be careful not to just say something. I have to say this has changed me for ever in more ways then one.

Have a good night everyone! Hugs to all

Amelia123

Yay Coastal - how awesome to be done.

Welcome Bets. I too was excited when my hair started to come back.  At first white and wispy, now it's dark.  Seems like lately it has gotten thicker rather than longer.  Seem to be stuck at around 1/2 - 3/4 inch. But hey, I'll take it!

Rosie, I feel the same way.  When I hear people complaining about stupid/little things, I think to myself "well if that's all you have to complain about, you've got a pretty good life".  But then I'm also happy for them if this is their biggest concern at the moment.

I'm at 16/28.  So far so good! My doctor recommends Calendula cream from California Baby.  The little jar was over $12 so I haven't used it yet, especially since my skin seems ok so far.

I'm learning so much just from reading these boards.  Seems like every day I have a few questions to ask the technicians.  I do feel bad for the poor lady stuck under a broken machine for an hour.  Who knew these darned things are so fragile?

jbokland

is anyone dealing with latent nail issues ? I am 8 weeks PFC and just took polish off to find brownish cloudy spots on my nails. It's mostly on the upper halves toward the tip.   Will this grow out or is it a fungus? 

rettemich

coastalxpat, Congrats!!!

Izzy, yeah me too, I was so bummed today. I was signed up to enter a study on taking DIM with the Tamox. But they didn't get the money to add more participants. I was hoping it would help with some of the side crap.

rosie, sunshine, debster, I really feel that way with my 20 yr old. When she start whining that she needs a new $500 phone......ugh.......Really!? And when friends whine about really petty stuff.

sunshine,Try to really, really massaging the scar tissue. Even though it is not a visible scar, it's still scarring.  My Plastic Surgeon said it helps to break it down. Both he and his PA always keep telling me, even through rads to massage, massage, massage. LOL

 Maybe you can get some help

Deblc

jbokland I had something similar, darkening and thickening of nails that grew out eventually. 11weeks PFC and they're almost all grown out. Many people get black nails and/or lifting of nails from the taxol, so I considered myself lucky.

jbokland

deb- so true!  I was committed to icing during taxol do I think it may have kept tgd collateral to a minimum 

Louanne

I have a question for all of you GREAT ladies. Those of you that finished RADS, and have had a follow-up, did you have to go for a unilateral mammo of the radiated breast? I'm very sore now, can't imagine being flattened so soon!  

Lisaj514

Good morning summer rad girls, in the car this morning and heard this song. Had to share! Lol perfect!

http://m.youtube.com/watch?v=-ORyLcSdcfE

jhodro

I'm so glad I'm not the only one struggling with the petty issues that people seem to have. Since going through this, I have so many things to be grateful for, I find myself not sweating the little stuff nearly as much. I am still very (too) emotional over little things, but I can always bring to mind many things that I am grateful for, so it makes it better. I have been struggling to find my place at my work since my return and they haven't been overly accommodating. Actually, not at all. Fortunately, with the support of my husband, I'm able to resign. I'll miss some people, but I can't act like what I do is life and death any more. It isn't (I am in advertising). I have been asked to move chemo appointments because there was a meeting, as an example. Now, I will go forward and look for something that is more suitable for me in my 'warrior mode.' I look forward to starting fresh. Thanks to all you great ladies that I've been able to learn from and commiserate with over these past few months. Not sure what I would have done without everyone!!! 

rettemich

Louanne, usually they don't do a mammo until your 6 months out of rads. Unless there is an issue. So I wouldn't worry. 

Lisa, LOVE THAT!!!!! Thanks for the link.

jhodro, Good for you!! That is just bs. I hope you find something that works out good for you. Good Luck.

Louanne

Thanks rette! I have an apt. this month with my surgeon. The RO does want me to go next month for a mammo. I want to have another opinion before doing that. This will only be 2 months post radiation. That is scaring the bejeebers out of me! It may be because of the extensive DCIS involved also.

Lisa, great song! Just got me in the mood for beach time next week!!! Yay!! 

CoastalXPat, CONGRATS!!!!

Welcome Bets65!

Sunshine, when I hear or read someone complaining about the trivial stuff, I think of the times pre-cancer I complained. Also wonder how many times I got the eye roll!  

jhodro, hope you find the perfect job!