May 2012 radiation

SusannahW

McKenna, lots on your plate right now, and it sounds like you have to sit in mission control in order to coordinate it all. All the confusion about your tamoxifen, when to take it, blood work, etc., as if the whole thing weren't maddening enough.

Thank you for the encouragement, you're right, I've been through the worst. I screwed up my courage, and took my first femora today. I'm following 2fried eggs schedule, and starting slowly. Ite meant a lot to me that you took the time and interest to help me along.

Neeners815

Hello ladies, 

Hope everyone is well!  We went away over the weekend and I rarely thought about the cancer.  I did think of it before when I was trying to find my bathing suit with the best padding so you couldn't tell righty was smaller than lefty (because you can't tell it in a bra, but I was sure you'd be able to tell in a swimsuit with no padding). It actually upset me more than I expected.  I found two, though, so was fine once I saw I at least had an option.

This weekend we're going to the caribbean.  This is the big celebration trip post-rads.  I can't wait to get into the ocean!  I will take pics and see if I can post a couple here for my rads buddies.

There's not much else to report except I think I'm going through menopause.  Lordy.  My poor hubby  

SusannahW

Neeners! I've missed reading your posts. Have a wonderful vacation!

mckenna

neeners, how fun, we are going to mexico in november i can't wait!!! are you going into menopause from the tamoxifen/other ai or because it is that time?  can't wait to see photos of your trip, it is so deserved and you are going to be so relaxed

BLinthedesert

mckenna -- it is so nice to see you on FB (and your beautiful children) -- and the boobie food too ;-).  Good luck getting back into the busy-school-year routine.

Susannah, good luck to you on the femora ... here's hoping to tolerable side-effects.

Neeners -- I hear you on the lopsidedness.  I am having to make sure I wear specific sports bras so I am sqished enough that you can't see the difference ... plus I am so sore that I can't jiggle anymore otherwise it hurts all day long.  Of course, the more expensive ones work better (and I have to get some more of them).  I guess we should think of it as a reason to shop ;-).  Have a WONDERFUL trip, I can't wait to see the pictures.  Menopause, oh boy, I can't wait.

I hope SB had a great bike ride this week, that her/your white blood cells continue to be on the rise, and that Kane is continuing to do well. 

Have a great week ladies. 

mckenna

bl, it is great to "see" you too.  thanks i think my kids are pretty cute too and your posts motivate me to get out and exercise more.

sb, you will be glad my 7y/o and i have been biking, nothing strenuous, but fun.  if we can take our bikes rather than the car we try to

mckenna

Sb I accidentally ignored you now I cant see your posts ugggg. Cant find you on face book but I am trying

BLinthedesert

Hi Ladies,  just stopping by to let you know I have been thinking about you all.  Happy Labor Day!

Neeners815

Hello, ladies!  I am back from Grand Cayman.  I just created an account on photobucket so I could share some photos with you.  First, the ocean outside of our hotel:

 

Neeners815

And don't forget the nice pool at the hotel:

 

BLinthedesert

ha ha ha  ...  Nice toes!!  oh, and great views too.  

... two posts, and not one mention of breasts! 

jittersmom

beautiful pictures..my husband and i are going to St Petes at the end of the month I can't wait...a much needed vacation from BC madness this past year! He has to go for work and I get to tag along!

sbelizabeth

Beautiful!  Thanks for sharing, Neeners!  Jerry and I are going to Estes Park next week for a family reunion and then to Chicago for a nursing conference.  It's not exactly the Caymans, but it'll be a nice break.

Neeners815

Jittersmom - enjoy St. Petes!  Take a toes pic -  hee hee!

SB - I love Chicago.  Have you done the river architectual tour before?  Enjoy! 

mckenna

we all deserve a vacation!!  so glad neeners had such a fantastic one!!  jitters & sb hope you have nice get aways too!!

sb i just went to chicago about a month ago, it is a fun city. 

we are going to mexico for 8 days over thanksgiving, i cannot wait

ok, you can still "see" the radiation field outline because it is still a different color than the rest of my body and now the edge of that outline is so itchy!!!  my lymph specialist wanted me to call my doc to make sure this is typical or if i should be seen. the nurse said it is likely part of the healing process and the healing process can take a year or more.  i can't take this itching for a year . i see the MO on tuesday so i guess she will weigh in on what it is too.  my body is so weird!!!!

Neeners815

McKenna - you really do get some crazy SE, don't you?  I feel bad for you!  

Speaking of SE, I started with the Tamoxifen again - take two.  I didn't want to take the chance of the weird heart thing when I was out of the country, as goofy as that sort of sounds.  I'm hopeful everything will be fine this time. 

STLmom

Hi everyone. We just returned from our 12 day Glacier trip last night. I did fine and a sore toe held be back more than cancer or radiation LOL. We hiked from 1 to 5 miles most days. I loved the beauty wildlife and cool weather.

mckenna

neeners, that does not sound weird at all.  i was nervous about going to chicago for a weekend which is only 5 hours away and in our country so any SE's  yet.  i have to say now that i have been on it for 2+ months, most of the SEs are fading.  still losing hair but not as much, still feel a little achy when i first wake up but no big deal.  very few warm flashes.  all in all manageable.  it is the boob SE's that drive me nuts

stl, sounds like a great trip and how about today's weather, i hope it stays like this i am done with my kids having half days!!

BLinthedesert

WOW!!  I love living vicariously through you ladies in your wanderings!  I can't tell you how happy it makes me to see everyone moving forward and doing so well!!

Speaking of breasts  I had an "interesting" anxiety dream the other night.  A little background, even the radiation field has faded for me -- hardly noticible (except when I get out of the shower, the field tends to get "redder" in a hot shower).   However, my nipple area is still really swollen (my RO said, "well, we knew that got hit hard" -- oh, you mean when "we" thought it might fall off? ).  I am also having a lot of problems with the muscles in my chest -- and also my shoulder.  My shoulder hurts pretty much all the time.  If I try to raise my arm up it pulls so tight on my chest, it brings tears to my eyes.  I am sure that my sitting at the computer all day does not help this.  I tried to get my RO to give me a rx to see a lymphedema specialist (to see if it was truncal lymphedema) - she wouldn't - she doesn't think that is what it is and she thinks I "...just need to give it time to heal".  Then, to top it off, I have a fairly substantial (3cm x 3cm) rash which both itches and burns (maybe like yours mckenna!).

Anyway, on to the dream:  I had called my BS and gotten an appointment, but it was not a regular appointment, he had to "fit me in".  So, I was told to go to the hospital and wait for him there, and he would come back sometime late in the day and see me.   So, I went there, for some reason it appeared to be late at night - so all the other clinics were closed.  And there wasn't even anyone wherever I was.  There were some patients wandering around, and some nurses, but no BS.  It seemed like I was waiting there for hours.  But, and here is the "funny" part.  I kept lifting my shirt and looking at my boob to see if it looked "swollen" -- I kept showing it to my husband and saying, "what do you think, does it look swollen to you?"  -- " I think it looks swollen" -- "I don't know, maybe we should leave, but doesn't it look swollen?" --- ha ha ha ... seriously ladies, I must have lifted my shirt and asked this question about 20 times in my dream -- I just kept staring down at my breast as it got more and more swollen, right in front of my eyes!!!  it was weird though, because the "clinic" was compeletely deserted and my BS never showed up.  

Boy, Freud would have a field day with that one.  Without any "deep" interpretation, I was struck by how flippent I was (in real life too) about flashing my breasts .

I hope you are all doing well!! 

Mopsy

Does anyone else have a very sore area on the ribs on the side of their body?  The front just has that contracting muscles feeling, but my ribs just never stop hurting.  They started hurting on Day 1 of radiation, so I believe that to be the cause.  All of my skin is healed 2 1/2 months after finishing.

mckenna

mopsy, i don't have constant pain but if you touch the rib area, it feels almost like a bruise???  does that make sense?

ok, i made a seperate post about this but wanted your fabulous opinions as well.

i went to my first Mo appointment after starting Tamoxifen on 7/1.  when she asked me what side effects i was experienceing i told her hair loss (requested to take a prenatal vitamin which she approved) and constipation which is controlled with colace.  i have other minor side effects but nothing to write home about.  she suggested just taking half a pill instead of the full 20.  she said because my spot of DCIS was so small and removed with the biopsy that 10 should be good.  has anyone else been given this recommendation?  i really was not complaining much about the side effects so was surprised at her suggestion. she said life style change can help more than the Tamoxifen and that the fact that i am loosing weight (have lost 30 since my surgery) made her feel comfortable with the recommendation.  at this point i am leaning toward trying the prenatal and staying at 20 but want some other opinions.

Lagata1276

I didn't realize our diagnoses were so close Mckenna. Congrats on the weight loss!! My MO decided to hold on off the tamoxifen until I am done with all my other little problem... open heart surgery for a congenital heart defect. She said as we were so aggressive with the radiation, she was comfortable starting me later on the tamoxifen, even after menopause to try to avoid the SEs (I'm 45). So I wouldn't be too concerned, but that's just my two cents.



Neeners - LOVE your toes! I mean pics!

Lolalee

Hi seblizabeth, have not posted on this thread before but as I am soon to start Rx I am trying to learn as much as possible.  I read where you have a burn on your back.  Do you mean that this was caused through Rx? Does the radiation go right through to the back? Did not think this was possible, perhaps I am not reading this correctly.

Best wishes to everyone for a speedy recovery.

BLinthedesert

lolalee, it depends on the radiation field for your rx prescription. Some women, particularly those with mx (and those whose field includes lymph system directly, our phase III friends), have noticed that their back gets a small amount of radiation.  It hardly ever happens for DCIS (because it is rare to have mx and radiation).  If you want to see what your radiation field is, you can ask to see the CT scan that they do during your simulation visit - in this visit they take pictures that plan the field and they can show you the area(s) they will target.

Good luck. 

sbelizabeth

Lolalee, I had a mastectomy before my radiation treatments and developed a fair-sized seroma, which is a fluid-filled sloshy thing that fills up under the skin of the incision area.  My radiation oncologist was concerned that, although a very remote possibility, the fluid in the seroma might have some cancer cells in it and slosh around to my back and seed them there.  That's why he developed a targed boost to the area just toward my back, under my arm.  The boost gave it an extra dose of radiation to the skin, and it just bloomed in response to it.

Most women do NOT have this effect.  My skin reaction was quite extreme.  I'm glad to say the hole is almost all the way closed, and although there's ways to go with total healing, I'm much more comfortable now. 

Good luck and blessings as you step forth on this journey!  You'll find it's over before you know it.

sbelizabeth

Oops...double clicked.

SusannahW

Sbelizabeth, good to see your face again, miss your posts. Hope all is well!

Susannah

mckenna

well the question as to whether or not to take 10 or 20 of tamoxifen has been answered.  i broke out in a horrible rash that several medical professionals let go on for 7 days before someone finally gave me prednisone.  however since it was allowed to get so bad it is now not all the way gone after 7 days of high dose prednisone.  but it is getting better.  so no more tamoxifen for me. they did a skin biopsy and it is consistent with a drug interation.  i want to have a double mastectomy without recon and just be done.  lots of people around me think that is crazy, but i don't care about these damn boobs.  i want to be done with hospitals and drs that treat the disease and not the patient and i want my life back.  did anyone else have mastectomy without recon?

BLinthedesert

Oh mckenna, I am so sorry you have had such a rough time.  There is a thread on the board here full of women who have made the choice of mx without recon. 

However, another option is just to forgo tamox, and feel comfortable that you have reduced your risk of recurrence pretty darn low with just lumpectomy and radiation.  You could save the mx option for if you ever need to be treated again.  

Hugs to you, I feel badly that you are so frustrated. 

mckenna

bl, that is what my mom wants me to do.  i may just wait until my mri in march/april and if that is clear, hang tight with close monitoring.  if they see something, i will refuse a biopsy and just go to straight mastectomy.