December 2010 Rads

Barbcard2

Thanks for the support, everyone.   I particularly like the  comment  re the start of rads being the beginning of the end, or words to that effect.

Barbcard2

Thanks. In about an hour I have my pre-rads "markup"--forget the exact word b/c my mind is not up to par.

Sherryc

Welcome Julie--the ladies on this board are great and will give you lots of support. I am going for #4 today.

Jo glad you got a good nights sleep.  It is amazing what that will do for the mind and body.

I am already finding this challenging trying to work from 8-1 run whatever errands I have and then off to rads. I am rushing at work trying to cram everything in so I do not get behind.  I am the only one that does my job so no backup here.  Although I have a great boss and if I got behind he would not think twice about it and would not say a word to me.  He knows it will all come to an end. But I am hard on myself and want to keep everything going.

Finally had a breather to look at the boards.

myesan22

Hello laidies. I hope to join this group and start rads this month. I have appt with rad onc 12/13 so hopefully we can get moving on the CT simulation and treatment. I met with rad onc before chemo to see if I was eligible for the week-long readiation treatment which I wasn't and he said I would have to have 6-7 weeks of radiation. Glad to have all this support and information! I'm sure I'll have questions once I get my treatment plan in place.

Sherryc

Meyesan22-glad you have joined us although hate that you have to be here.  This is a great group of ladies that will give you support.  We all need that at this time.  It helps to here what everyone is going through.  Good luck with your appt next week,

jo1955

jule_dee & myesan22 

Ladies - You will find lots of support and loads of information to get you through rads 

Julie_dee - My dx is just about the same as yours.  I was the one who put the X's on the calendar.  Sorta made a game out of it.

myesann22 - Get your questions ready and we will be more than happy to answer them.

Sherryc - I know what it was like to try and get in a full days work and try to do rads.  It was exhausting some days. I too have a good boss and he told me from the beginning  that I could have all the time I needed.  I have worked through this whole process.  I wanted to maintain some sense of my "old" normal.  I am also hard on myself and want to make sure my residents are well taken care of.  I have been doing it for 11 years and can't see myself not doing it.

Barbcard2 -  You will do well with the simulation appt.  Let us know how it went. 

yellow78

Hi Everyone!

Just got back from my simulation.  I ended up getting 5 tattoos, it wasn't as bad as I thought.  I go in for my dry run on Friday and start on Monday. I was able to pick 3:30 for a time which ends up being ok for everyone.  My biggest thing was that I wanted to be able to pick up my kids but now I need to figure out who is going to watch them.  My husband wants to come with me but I think it might be easier if he stays with the kids when he can and then I have other family around to help.   I will have 28 rads + 5 boosts.  Today mentally has been a rough day, to be honest I am really getting sick of this "Cancer thing".  Sorry for the poor attitude, it is just one of those days.  How is everyone else.  Jenn

MrsNice

WOW!  So much activity I can't keep up!!  Welcome everyone!

I had my CT scan on Friday, but they called this morning and want to re-do it.  Not sure why; my DH took the call as I was still snoozin' away.  So I go back for another CT tomorrow.  Ergh.

SoCal is having another warm spell so it's time to put the jeans and long sleeves away and get back to tank tops and capris.  So weird to have warm weather when the rest of the country seems to be chillin.

Have a great day everyone!

jo1955

Jenn - Glad the simulation went well and you were able to pick a good time to go.  Must be hard to juggle everything and still take care of the kids.  I have confidence you will work it all out.

Simulation day can be overwhelming - heck this whole BC thing is overwhelming. Please do not apologize for the attitude.  It is perfectly normal.  Although I a finished with rads, I still have rough days.  I just accept it as part of getting through this and know in time it will pass.

susantm

Welcome to the newcomers! so sorry we have to meet this way. I finished #7 of 33 today.

Sherryc, I sympathize with trying to work and do rads. While my situation is a bit different--I work on my computer at home scheduled hours, plus do freelance work, I have felt pressure to get in more hours (pressure from myself and the bills, not family or job). I just hate to admit I can't do it all, I guess. And I know hubby would like to retire, but we can't afford it yet, so I want to get some savings in the bank. (still paying off our share of son's student loans, dh's car broke down last night, there's always something!) It's hard.

Well, I'm getting ready to start work in 6 minutes. I hope everyone has a good day. I have no real SE's yet from rads, other than being tired from getting up early to get there. Take care, all, and I will check in again after work!

Susan

JulieH

This is my first post here.  I'm not sure that the rads will begin this month, but I do have my first appt. with the radiation oncologist on Monday.  I had my lumpectomy and SNB last Wednesday and the pathology report came back showing no invasiveness or node involvement with margins of 1mm - 2mm.  I'm hoping that will be sufficient not to necessitate more surgery.  I'm pretty sure there's not going to be any chemo, so I'm thankful for that. 

I've read through the thread and already had a number of questions answered -- the support here seems marvelous!  I do have a couple of questions though, and if anyone can shed some light, it would sure be appreciated.

1. Is not wearing a bra recommended or required?  I am really uncomfortable not wearing a bra (I'm rather large breasted), so I'm a little concerned about that.
2. How about deodorant?  Is it that you just can't wear it before the treatment but can put it on afterwards?  Again, the idea of going without is not something I look forward to . . .
3. I see a lot of folks (everyone?) has a CT scan.  Prior to my surgery, the surgeon ordered an MRI.  Anyone know if that would be sufficient?
4. My nurse navigator said rads usually begin about 4 weeks after surgery.  Is this what you have found?  Granted, my surgery is not as extensive as some; just the removal of a golf ball-sized area of tissue from the breast and a SNB biopsy scar that's about 1 - 2" long, both incisions closed with adhesive rather than sutures.

I have learned so much about this disease in the last few weeks, more than I ever expected to need to know as there's almost no history of cancer in my family, but it's all still so unknown.

jo1955

jhornick  - First let me say Welcome - hate to see you here.  You will find this thread is loaded with lots of support and information.

I had minimal surgery and started rads about a month after surgery.  You need to heal before you start as the incisions will not heal properly if you start rads too soon.

I wore a bra throughout - had one that was cotton lined.  You will find each person is different and it will depend on how your skin holds up during rads.

There are natural deodorants out there that can be used.  You have to stay away from the ones with alumimum in them.

CT scan is part of your simulation appt and everyone has it. This is used in the planning process and has to be done by your rad onc.

You will be able to discuss everything that will happen at your first appt with your rad onc. That is the time to talk about creams & deodorants you can use.  Each rad onc allows different things.  If you are having skin problems, and the things you are using are not working, this is the place to get really good advice and compare notes with the other ladies in this group.

Rads can be overwhelming at first - but just know that we are all here to help you through this. 

cmf

I think I will be starting RADS in Dec.  I still have to see another onc for a second opinion.  The first onc told me that I am in the intermediary group from my oncotype score, I guess it is a grey area for chemo.  My surgeon and this onc think I should just get rads.  The really bad news is that he felt something in my liver and I have to have a liver biopsy on Thur. I had a lumpectomy on Nov. 12  My surgeon suggested pinpoint RADS, but the onc told me to get whole breast RADS.  Anyone in the Phlia area?   

Diagnosis, Stage 1, Her2+ Oncotype score 18, clear lymph nodes,.tumor size 1.8 cm

cmf

Good luck with your treatment.  I had an oncotype score of 18 and am trying to decide whether or not to get chemo before the RADS.

cmf

myesan,

  Did you want to have the pinpoint RAD?  I am thinking that the whole breast RAD seems more thorough from everything I am reading.  But I am not an expert, I just have been reading a great deal to help me decide which one to use.

toni30

cmf - Are you looking for a radiologist on the Philly area?  An oncologist? Not sure I understand the question. I am going to HUP.  Toni

jo1955

cmf - The whole breast rads plus boosts seems to be the standard.  From what I have read, it seems to be the best way to go.  You will need to discuss this at length with your doctors then decide what would be the best course of treatment for you.

susantm

I had an oncotype score of 22 and elected to skip chemo and just do radiation. Since they don't even know if chemo helps in this score range, I decided it wasn't worth the side effects and risks of chemo for an unknown benefit. The oncologist told me that a lot depends upon your personality. A person who is able to tolerate uncertainty to some extent would probably be happier skipping chemo. Other people would not be able to rest unless they had done every possible thing to defeat the cancer. So basically, each person has to decide what is right for her.

Good luck with the decision, cmf and I pray the liver biopsy is negative. I had to have an endrometrial biopsy three weeks ago, and I was definitely nervous, but it turned out to be nothing. I hope yours goes as well!

jo1955

Okay! Not to sound stupid, but what is an oncotype score and who does it?  I have read it many time on the threads and don't really know who does it and what it is for.  I don't think I ever had that done. Help me out here ladies.

susantm

Jo, you've been kind enough to answer questions I had, so I am happy to finally be able to answer one of yours. Here is some info I copied from a health site:

The Oncotype DX breast cancer assay, is a test that examines a breast cancer patient´s tumor tissue at a molecular level, and gives information about her individual disease. This information can help individualize breast cancer treatment planning and identify options. The Oncotype DX breast cancer test is the only multigene expression test commercially available that has clinical evidence validating its ability to predict the likelihood of chemotherapy benefit as well as recurrence in early-stage breast cancer. The Oncotype DX gene expression assay is intended to be used by women with early-stage (stage I or II), node-negative, estrogen receptor-positive (ER+) invasive breast cancer who will be treated with hormone therapy.

It is an expensive test and only done on those listed above, and apparently not all doctors order it. My onc told me he would only order it if I would consider the option of chemotherapy. The problem is that most people end up falling in the middle score range, and there is no evidence one way or the other as to whether chemo helps people in that range. They use tissue from the lumpectomy to do the test and my onc said it is sent to a lab in the Midwest, which is the only place it is done.

Hope that helps!

AustinNana

Hey wonderful ladies,

Thanks for the welcome.  Had my first boost today - starting reads with 6 boosts before the other treatments.  Anyone else doing this?  It took over 1.5 hrs due in part to a problem with the machine.  I had 11 minutes of rads from underneath (my tumor was at 6 o'clock) and then 11 minutes from the right side.  I was very anxious on the inside and prayed the first 11 min. to put myself in a safe place.  My husband was very stressed that it took so long.  He takes so much care with me and I try to care for him - he is so loving.  Just to think I met him in the Denver airport!  Take care everyone. Blessings, Dee

GIJan

Hello. Newbie here. My lumpectomy was Sept 16 and I still have not started the radiation therapy I understand is insurance against the cancer returning. I am getting nervous about this ever widening window. During my SIM, the CT scan showed a large area on my lung which has now become the focus of my 'case.'  My oncologist is taking a conservative approach and doesn't want to compromise the lung issue. (A PET scan showed a highly metabolic area but the infiltration is not lung cancer.) He seems to think this area should shrink or disappear before I can start rads. And now I have a staph infection in the operative breast. Delays, and more delays. I'm getting very nervous and am starting to doubt that, at this point, radiation will do me any good at all.

Any thoughts from others in the community? How much time passed between your surgeries and start of radiation? Any of you opt out of rads and just go with lumpectomy and Femara?

I look forward to your answer. TYVM

susantm

GIJan, I had 7 weeks between lumpectomy and the start of radiation. My doctor said they usually wait six weeks, but I had to wait for my oncotype test results, and then the machine was broken the day I was to have my sim, so that had to be postponed. I am glad to be started now; at least I feel like I'm getting somewhere. Waiting is the hardest part, I think! Good luck with your issues!

Tg5471530

I was not supposed to start till the 15th but the Dr said if he could get the planning done in time he would call me in sooner.  Well I got the call and I am starting my rads tomorrow.  I think.  They may need to change some things with the mapping but I'm planning on actually starting tomorrow.  cmf-  I am in the philly area, I am getting my Rads at St.Mary hospital in Langhorne (just outside of Philly).   Where are you getting your treatment?  susantm - Thank you for describing the Oncotype score.  I aways wondered why I was never told my score.  Well its probably because they didnt do the test since I am stage 3.  I was actually going to ask my Dr to do the test, but it looks like there is no need.   GIJan - I know how you are feeling about waiting so long to start rads.  My last chemo was Sep 5th and my surgery was Oct 5th,  and since I cant do Tamoxofin I was scared waiting for Rads to start.  I was not going to start till next weds. the 15th because of a frozen shoulder. But luckly they were able to finish the planning sooner and I wll be starting tomorrow,  I'll pray it all works out ok for you too.

redninrah

a question regarding the CT stimulation.

Is it like a CT scan that actually checks to make sure there are no cancer cells there?

jo1955

redninrah - The CT scan is part of the rads planning process.  It is used as a way of making sure you are aligned in the exactly the same position everyday, along with the body mold and tattoos.  The cancer cells can not be identified - they are depending on the rads to kill any remaining cells that are still present. Those little suckers have a tendency to hide in places that can not be seen.

susantm - Thanks for explaining the oncotype dx.  I saw my onc before surgery and like I said, based on my biopsy path report, he was sure I would not need chemo.  As a matter of fact, he was really surprised the tumor was found in the first place.  I am now a firm believer in mammos - they do detect cancer and will not ever put one off again.

GIJan - Welcome - hate to see you here with us.  I had my surgery Aug 30 and did not start rads until Oct 14.  Had several delays along the way and was glad to finally get started.  I would advise to go through with the rads.  This beast is so sneaky, I would use everything available to make sure that sucker is gone.  There is lots and lots of support and good information here.  Keep those questions coming and we will be more than happy to answer them.

tammyg - Congrats on starting rads.  First couple of days will seem hectic - but then will settle down into a routine.

Valgirl

cmf-  I had an oncotype score of 16 and no chemo for me. Actually I thought 19 started the intermediate range for the oncotype test.     I was stage 1 grade 1 tumor 8mm.   Because the BC was in the left breast I had IMRT  which is a more targeted radiation designed to keep the radiation away from the lungs and heart. Not all centers do it.   It also has the benefit of less side effects.  Not all insurance will pay for it though.   I am on day 21 of 30 rads (boosts included in each rad).  So far the only side effect I have that my lumpectomy scar is red, lumpy and raised.  They tell me in time that will go away.   Good luck with your decision.

Sherryc

Wow one evening not on the board and I missed alot. Welcome to all the newbies.  Sorry you all are here but this is a great bunch of ladies.  I'll try to catch up on my reading. 

yellow78-gald you will be starting on Monday.  You can't finish until you start.  For me it was such a relief to finally get started. I could see the light at the end of the tunnel. And you are aloud to have a stinky attitude at times.  We all do and this is a nice place to be able to share it.

JulieH--My rad onc told me he likes to wait 6 wks to give time for the incision to heal really well.  I ended up waiting 9 wks because of other delays with additional testing my med onc waited.  As far as the bra do what is comfortable for you. The CT scan is required as jo said what they explained to me is that they need to see where your spine, lungs and heart are located against the area to be radiated.  This assist them in the planning process. My Rad tech told me natural deod was ok as long as I washed it off before treatment.  But stay away from anything with aluminum in it.

CMF-My onco score was 23 and my med onc was very no nonsence that he did not want me to have chemo.  He said it would only help 1 to 2% and that the side effects would be much worse and he did not feel it was worth it.  My BS and RO both agreed so I felt pretty good about that decision.  Hate to hear about the liver biopsy, hope it turns out to be nothing.  Will be praying for that.

AustinNana-glad you got started but hate to hear it took 1.5 hours.  I bet your husband thought you would never reappear.

GIJan I had elays and waited 9 weeks.  I think I would still do it no matter how long.  But your breast needs to heal first and with that infection you def want it to get better.  Sorry about the lung issue you are having.  Do they have any idea what it is?

tammyg-glad you are starting.  I will be doing #5 today.  So far it has been pretty easy.  My clinic runs on time and they get me in and get me out.

jo1955

Val - The SE's do go away.  I am 5 days post rads and the lumpy, raised look is gone.  I am still a little pink - had 5 boosts.  The rest of the area is pretty much back to normal.

Sherryc

I saw my rad onc yesterday and he thinks I am having a rection to the cream I am using.  I only seem to have reactions when I use it right after treatment.  I have been taking it with me and putting in on in the dressing room.  Yesterday since I saw the RO I forgot to put it on when I got dressed and guess what no reactions last night.  He did tell me if I wanted to try some aloe vera after treatment and use the cream morning and night for the next week we could try that and see how it goes.  He really likes this cream if I can use it.  It is Xclair and I too like it because it has lots of emollients in it and puts a protective barrier but is not greasy.  For my nipple soreness he said that that does start happening early for some people.  Said it will probably not go away.  He said it does for some but for most it sticks around until after radiation is finished.  So he suggested that I purchase silicone nipple guards.  You get them at the same place that the mastecomy forms etc can be purchases.  For now it only bothers me when I wear my sports bra which is every evening when I exercise.  My regular bra during the day is ok.  They were not expensive so ordered some yesterday and should get them tomorrow.  I hope they help.