August 2010 Rads

Bubbalu,

Glad to have sister-friends in this fight.  I will keep in touch

Carole, If you go to the MY HOME tab  and click EDIT MY DIAGNOSIS you can add or edit anything you want.

 Welcome to our home, we are all just sisters here.  I've just finished 5 of 30 and am aleady getting abnormaly tired.  I don't start my hormones until after the rads. Since I've no ida what will happen.  Sure hope I don't go through that again. 

Good luck.

Carole, Chubba's right on the edit page. The 'Edit my Diagnosis' should take you right to what you need. If your looking to add anything extra just scroll down to the bottom and add what else you want in the signature space before your name. Glad to have you here with us, sorry you've had so much to deal with lately.

Clarity, I do understand how you feel - it's been nine months since I began this journey and I'm ready to move on too. Hang in there with us, it can't be much longer.

I go for simulation on Tuesday and probably will start on Thursday. All the information each of you has shared has helped me so much and I don't feel alone in this. It's helpful to read about the many questions we have and the discoveries (or answers) those who have started tx have made.

Just want to thank everyone and say keep it up. This makes a difference.

Hello ladies,

I'm about to start Rads on Wednesday.  I had my planning session last week. My centre doesn't use tattoos so I've had to try and keep the texta markings on this week - HAS NOT worked well at all.  They put tapes over some of the marks but 2 have come off and some marks have disappeared altogether. They said not to worry if they came off but I thought most of them would stay on as they said I had to powder them and that they should stay on.  I hope this doesn't cause too much trouble on Wednesday - want to get started so that I'm finished!

I saw my Onc last friday and she wants me to start the tamoxifen right away but my rads onc had said to wait (different centres - needed Rads to be closer to home). SO have to wait until I see rads doc again to see if he'll agree for me to start. His reasoning when I originally saw him was that there was a "theoretical concern" that the tamoxifen would interfeer with what the radiation was supposed to do. My onc says that is an old way of thinking but some centres still abide by that.  Obviously it just depends on where you're having treatment as to whether or not they want you to start both at same time or not.  Must say I'm not looking forward to the hotflashes returning - had them through chemo but they have virtually gone now (I'm 6 weeks post last chemo).

Anyway, looking forward to chatting to you all. Mel xx

Hi all....  Pre-season football is upon us ! ! ! !   Something to take our minds off of treatment.  I went on Friday for my simulation and today I have my first real radiation treatment.  I have been wearing X's on my body which are covered by tape and today they will come off and I'll get my real tattoos.  My doctor said to use Aquaphor and/or Aloe Vera Gel.  I asked about starting Tamoxifen and she said it's fine to take it in conjunction with radiation.  I'll have to admit, I'm really scared since I have no idea how my skin will react.  Also, in addition to my boob, they will be using radiation under my arm.  I read that radiation can cause lympheda and I asked if there was a possibility I would end up with lymphedema and the doctor said not unless I'd had nodes removed.  I didn't have any removed.  Does anyone have any words of wisdom on this subject? 

ECT,  I met with the radiation oncologist today and we discussed the nausea.   We both agreed that it probably was the extreme heat/humidity here in Ohio and the fact that I was spending alot of time outside in it.      Today it is cooler and I've stayed inside other than my 5 mile jog/walk this early morning.    For the itching, she wants me using the Aloe Vera and to NOT scratch it (that easier said than done).    Thank you for asking!!!

Annie, relative to lymphedema, I've had it right after the surgery and was fitted with a compression sleeve.   The rad techs/nurse and onco are helping me by watching out for it to strike again so I am doing my massages to hopefully keep it at bay.    I also believe that you cannot get it if no nodes were removed.   Good luck and don't worry!

#13 of 33 done, yeah team.    Rad onco said today that I will see some skin changes this week and probably more fatigue (oh joy of joys).    Hugs to all!

Treatment number three down! Long day today. Has an appt wirh my oncologist at 9:15, my doctor was busy so one of the new docs saw me and it was not a good thing. He started in at the beginning like nothing had been done and instead of discussing whether I'd take tamoxifen or arimidex wanted to talk about me possibly needing chemo and genetic testing. I told him that all three of my docs had agreed I didn't need chemo and that I had already started rads. He said that was a problem. Wanted me to come back next week after more tests. I left the office and went to see my patient councellor at the breast center. She calmed me down and then talked to my oncologist. Now he will see me himself next week and she told him of my frustrations with the new doctor. It seems everytime things start to settle down something happens to get me all emotional and unsure. by the time all this was done with I had my radiation treatment and it was time to go to work. No time to go home or even get lunch. I did find some cotton camisoles at Meier and ditched my sports bra today - it seems to have helped the iritation I was having. Thanks to those who answered my questions about adding my diagnosis. Hang in there everyone!!

arubajan

    Sorry  I cannot help.  I haven't had any skin reactions like that, during chemo or since. Hope you can run down what it is, I'm sure it's annoying. Think it could be heat related?

    On my way to simulation, hoping to start on Thursday. I sure don't feel nervous about this but didn't sleep well and that's usually what I do when things bother me. Of course it could be chemopause related. Questions - questions??????   What's a women to do?

   Have great day all!!

        Carolyn

AnnieBear and all,

Just wanted to answer your question about risk of lymphedema. If you have had no nodes removed your risk is lower than if you had, but lymphedema can develop after any breast surgery (even without cancer -- breast reduction or augmentation as well). Radiation, especially of the axilla or supraclavicular nodes, does increase the risk, as does obesity or overweight. Still, slightly less than half of us who are treated for breast cancer will ever develop it, so it certainly isn't any sort of doom hung over our heads automatically.

Since we're all at some risk, though, it helps to know how you can reduce that risk. A few simple life-style changes can help keep you swell-free. Here are two web pages with reliable information about risk reduction:

http://www.lymphnet.org   (See their Position Papers on Risk Reduction, Exercise, and Air Travel)

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

If you have questions or concerns, there's a Lymphedema After Surgery forum here at bc.org where you're more than welcome to post or lurk. Hope none of you ever have a "swell" time of it!

Be well!
Binney

Hello ladies! My simulation has been delayed until the 24th so that the plastic surgeon can have more time to get more saline in my tissue expanders. Got a lot in the fill today and am very sore.

Does anybody else getting rads have tissue expanders in? I asked this before and don't think I got answers, but then I have chemo, old age, no hormones brain! lol!

Hi all,

I'm new to this group, started rads yesterday, 1 down 29 to go...lol

I am really nervous about how the radiation will affect my skin since I am looking to get reconstruction in January/february. I had a left side mastectomy.

Also curious as to why some Oncs make you wait until after rads to start the tomoxafin and some start it during.

Mo

Jsmiley 60,

I am having rads with TE.  My last fill was Aug 6.  My PS and RAD onc seem to be fine with it.  All of my treatments are discussed at a breast conference with doctors from each discipline area meeting to draw up a plan.  For me the fill "discomfort" lasted about 48hours.  I received 50ccs each week.  I have a total of 450ccs now.  I am  over expanded to adjust for skin shrinkage. 

ECT /Bubbalu

I went for my final markings this morning.  My chest looks like a patch work quilt with bright blue tape.  They all assure me that it will wash off .  I am ready to start, not apprehensive just wanting to be over this next step.  Will let you know how it goes on Thursday.

Binney - thank you for the links. 

I had treatment number two yesterday and everyone is asking if I'm fatigued yet ! ! ! !  I told them I think it takes a few more treatments before that happens.  I was telling the technicians about all of the horror stories I've heard and they told me to ignore them all and talk to them with any concerns I might have.  They said everyone will respond differently.  I am seeing blue veins appearing bluer on my chest and boob but so far that's all I've noticed.  They gave me permanent tattoos - four little black marks that look icky ! ! ! !  I plan to have small flowers tattooed over them when treatment is done....  Good luck to us all.

Hi again everyone, and welcome to the newbies!  It is really nice to be part of this community/sisterhood.

This morning I had rad #16 of 33 (tomorrow is half way!!!) and it is still going well.  I have some very slight reddening and am a bit tender, mostly around my node biopsy site, but nothing near what I was afraid it would be.  It is starting to itch though.  I have been going braless or wearing loose, front-fastening jog bras or camis with a shelf bra.  Am still taking 2 ibuprofen about twice a day (usually with breakfast and at bedtime, but sometimes in the afternoon too if I feel uncomfortable), and using Miaderm right after treatment (9:20 a.m.), in the afternoon, and again at bedtime.  Occasionally use Aquaphore on my nipple and incisions.  So far, so good!

I had never thought about the possibility of having the radiation lying face down!  My cancer was on the left side as well at about the 12 o'clock position above my nipple, but I don't recall how deep it was.  My lumpectomy scar is about 5-1/2 inches long (is that average?) and starts in the aureola of my nipple and goes straight up.  My rad oncologist said my anatomy is "perfect" for radiation, though, as my heart and lungs are deep inside and away from the breast tissue.  I wonder if that is the difference? 

I also have to have my right breast taped back out of the radiation field ... the tech told me it was because I am so "perky."  I told him they only look perky when I am lying down!

Had a Herceptin treatment yesterday and came home and crashed into a deep sleep for about two hours ... wonder if it was the combo of radiation and Herceptin, as I've never been that tired after "Herceptin only" before!

I am now 9 weeks out from my last chemo and my hair is starting to fill in, although I still have an almost bald area (about 3 inches x 2 inches) at the front of the old hairline above my right eye.  I also lost most of my right eyebrow last week (but not the left) ... I think maybe it was new growth pushing the old hairs out??  I look pretty funny (to me anyway) with just one eyebrow.  :-)  Still wearing scarves and expect to do so for at least another month. 

AnnieBear - I'm excited that college football is almost upon us.  Go (Oregon) Ducks!!

Take care and hang in there, everyone!

- Jana

Hi ladies with skin issues:  I had my simulation on Monday, uneventful, just hard to keep that arm up so long.  Was scheduled to start rads the next day.  I showed the tech some redness in the surgery site area (we thought it was from the sports bra and beanie boobie) and she said to show it to the dr. before treatment.  Then went out for Chinese food.  Woke with a huge angry reddness, itchie, painful and spreading fast over the chest/neck area.  Saw the onc and his nurse and neither one knew what it could possibly be.  He said he was not going to start my TX until this has cleared up.  Told me to use 1% cortisone cream, take a Benadryl and put me on tapering Prednisone for 9 days.  It was moving down my back as well but after one dose of Pred it has localized to the area where it started.  Now I wonder what kind of skin reactions I have to look forward too.  They said not to worry they will deal with them.  zIt seems like it's one thing after another, more road bumps to deal with everyday.

After my second AC I had bright reddness in both armpits, lasted many months.  Except for this experience the worst I've had is horrible itchie skin but I'll tell you what, I'm avoiding MSG!!!!!!