December 2010 Rads

michcon

Hi Ladies,

I'm looking at this group, but will not start until January. I've been doing chemo, my last one will be Dec. 14.

My question for all of you is when can I start prepping? I called the Radiologist last week and found it very strange that they asked me when I wanted to come in. I said, um shouldn't you tell me? This cancer thing really shines a light on the health care system and how messed up it is. I finally settled on an appointment with the Radiologist the day after my last chemo as I'll feel ok that day. I was ready to come in now and discuss it all with him, even get the tattoos whatever it takes to be ready and begin as soon as I can after chemo. Should I push it and call back? I've read how some of you got delayed. I need this to be over. Chemo is hard and not looking forward to Radiation. 

lisasinglem

Hi everyone - I will start rads on Monday.  I went in today for x-rays & pictures to verify my position.  I will have 31 rads and hopefully be finished on January 19, 2011.

Thanks for starting this thread!

jo1955

michcon - Welcome to the group - hate to have you here.  I came over from the Nov Rads.  I would call back and get some clarification from them.  From what you have said, they sound a bit unorganized.  From what I know, the tattoos and other prep is done just before you get started.  The delays that others have had are for various reasons such as rad onc did not like the planning and wanted it redone.  Some delays can be good.  What I mean by that is, if your BC is on the left, I would want to make sure everything is done perfect since the heart is a factor and don't want that to get damaged.  Every effort is made to avoid that.  

I know chemo must be hard. I did not have it but have read some of the posts of others who have.  The waiting sucks and we just want to get it done.  Many questions in our heads. As if we don't have enough to think about.   

Sherryc

welcome michcon I got my tatoos on the day I had my simulation and my CT scans.  My plan took three weeks which is a long time but had some issues with my placement and heart.  The day before I started I went in for x-rays of the placement for the dr. to make sure he liked it.  Was to start the next day but had some matenance issues and started the following day. Will receive 34 tx.

lisasinglem-well to the group.  I started yesterday and will receive 34 tx, so we will finish about the same time.

Jo-Hooray for you!!! I know you are soooooooooooo happy.

MrsNice

Had my CT and tattoos today.  They asked about my preferred time of day for rads, and had to give them a 2-hour window so I said 10am-noon.  Not an early bird, so that way I can continue to get my sleep, go to rads, and then work half-day afternoons.  Hopefully it all works out that way.  They said they would call me with my schedule, which should start in a week or two.  Depending on the scan, she said I would have either 28 treatments, or 33 with the last 5 being boosts if they can pinpoint where the tumor was, which I'm guessing will be difficult since it was below/underneath my nip which is now gone.

toni30

Hi Ladies:

Had my CT scan and tattoos today too (like Mrs Nice) - and I go back in a week so they can finalize the plan.  It was annoying to have to lie with my arms over my head for 30 minutes, but otherwise, uneventful.  Starling - like you, I am having the Canadian protocol - fewer sessions (20) with a slightly higher dose.  I will be interested to hear your thoughts as you proceed.  They didn't give me any advice on creams; I guess they'll do that next week - I think they give us samples.

rachel5738

I am having my CT simulation on Dec 22nd and will start January 4th. They said they would originally start right after Xmas but the Doc said to wait for the new year...said to take break--that was good because I wasn't looking forward to starting radiation on Dec 27th I finished chemo last week---not looking forward to radiation but REALLY looking forward to getting it done! Thanks to everyone for sharing their experience as I am worried about skin issues for sure.

jo1955

Sherryc - Thanks for the balloons.  Just got back from a fun night out with hubby & friends.  Haven't done that in over 3 months.  Still get tired from rads but that will go away in time.  It was funny, when I finished today I was given a certificate for completing my radiation therapy and an appt to go back next week for a skin check.  What is so ironic about all this is they would not let me use any creams until it was too late, I had the rash, rad burns and blisters.  Now they are all concerned about my skin?  What is up with that?  The skin is almost back to looking normal.  The boost area is pink and I have one small spot on my SNB scar.  Otherwise, everything looks good.  

I had an alarm set on my cell phone telling me when it was time to leave everyday to go to rads.  It felt sooo good to turn it off today.

MrsNice, toni30 & rachael5738 - I don't think I have seen you on this thread before.  Welcome and sorry to see you here.  I was on the Nov rads and continued on this one since I would not finish until Dec.  Although I have finished, I plan on staying here.  If you have any questions or would like any words of advice, PLEASE ask me here or you can send me a PM.  I had lots and lots of support and got lots and lots of good advice from other ladies and I would like to be able to do that for you.

maggiesmom39

Just discovered I will be joining the Dec Rads Team after I had a reoccurence less than 6 months post mastectomy. Had biospsy on Monday. Got results on Wed. Met with rad/onco today. May have to one surgery to clean up margins, but not sure yet. Hoping PET scan on Monday comes back clean! If it does then will have between 30-35 radiation treatments. Sorry all of you are in this with me,but I know that having you here will help me greatly.

This has been tough year, as it probably has been for all. Had mastectomy in May, Expanders put in in August, then taken out in Sept due to rupture caused by infection. Wasn't planning on anymore surgeries for 6 months when I could try recon again. Have spend weeks reassuring my 3 year old that I'm not sick anymore and then this. Maggie's going to think her mommy is a liar, for sure,

jo1955

maggiesmom39 - BC really sucks!  Sorry to hear you are going to have to go through this again.  I am beginning to wonder if all this treatment we are put through is really doing the job at staying cancer free.  I have read many postings of recurrences within 1 year or less of the first dx and it breaks my heart.  Makes me scared.  I just finished rads today and have not gotten to the point where I have had any followup mammos and/or scans.  Will dread having them done and then waiting for the results.

(((HUGS))) to you 

Sherryc

Maggiesmon so sorry you are having to face this bc again.  I'm sure Maggie won't think mommies a liar.  Maybe instead of talking in terms of you being sick talk about the Dr. making your bobo (or whatever you refer to it) better. It is tuff because you want your children to feel secure.  Hopefully thing will go more smoothly for you from here on out.

I had my 2nd radiation today and talked to the tech about what I felt last night.  Said she had not heard of anyone have anything like that after the first treatment but felt that I needed to talk to the dr about it on Tuesday especially if it continues over the weekend.  She was very good about explaining all the technical stuff about tissue dieing and rejuvinating and what happens to the skin etc.  She also said that this early on your breast really does not know it is being radiated. So this evening I was changing clothes to help DH with something and my breast was really pink.  I showed my husband and asked him if he thought my breast knew something was going in. He thought definalty so.  I have also had warm spots throughout my breast all evening.  They come and go in random spots.  I wish I could just be normal textbook.  At least I have the weekend with no tx and I guess I'll see how Monday goes.

AGeorgiaDeb

Wow!  I went to my appointment to get "set up" today. Got my tattoos. Finished chemo 2 weeks ago-not totally over that.  I go back to the rad onc on the 15th and then start the treatment on the 20th.  38 treatments.

I am a bit worried about all this skin problems.  everyone seems to have prescriptions or recommendations from the docs but they told me I would have basically no problems.  Fatigue maybe.  What's the scoop?  Those of you in this let me know. Chemo taught me that side effects are different for everyone so I am trying to be aware but a little heads up won't hurt. 

I am struggling with this deodorant thing-I need deodorant and I get the sweats from hot flashes so I can't imagine 7 weeks smelly!!  any tips??

I am going to try to stay updated on this thread-had a hard time with the chemo on.

Debbie

Tg5471530

Jenn-  I totally understand doing this with small kids.  I have 3 kids ages 4,6,and 9.  It was very hard for them in the summer too.  They are used to me being a stay at home mommy who takes them to the Y and Sesame place almost daily,  This summer I wasn't able to do any of that.  Luckily I have a great friend who let me take them to her house and swim in her pool on the days I had the kids (my husband and I are separated)  She was great on those chemo sick days too.  But I could never imagine running during all of this.  I used to bike or rollerblade daily before BC but barely could take walks this summer.

redninrah

Maggiesmom- suprised you got a recurrence so quick, did you have Chemo?

AGeorgiaDeb

Nancy-thanks for the reply.  I will check out the Maine's deodorant and ask my rad onc if it is OK.  Of course most of the time I am talking to a tech. 

Glad to know you are doing well -my rad onc said that most people feel tired-not like chemo but inclined to do less that they normally would.  

Maggiesmom-just tell your little girl that people get sick all their lives and the body has to heal.  Some sicknesses take longer than others.  Give her a feeling of control-tell her she can help you feel better by rubbing your back fr shoulders or tell her to say a prayer for you or tell her she helps you heal when you can lay down and rest while she watches TV or plays.  Be sure to point out to her that other people get sick too and they get better.  

Hope all goes well with the new treatment.

Debbie 

maggiesmom39

Thanks for all the support everyone. Having not started rads yet, there's so much I don't know.

redninrah: The docs were suprised about the reccurrence, too. My first tumor was small with supposedly good margins. In terms of tumors, mine was described as "boring." by oncologist. Oncotype score was 2nd lowest doc had gotton back. Determinted that chemo wasn't necessary. On Tamoxifen. Radiation oncologist said that the tumor must have been closer to the chest wall then they thought.and some cells were left behind. He basically admitted human error. I asked if I should have had radiation after bimx, but they said that I didn' met critera: mutltple tumors, tumor size over 4cm or one other thing I forgot.

jo1955

AGeorgiaDeb - My rad onc told me at the beginning that I would not have any problems with the skin. Said "modern technology" cuts down on those significantly.  Boy, was he wrong.  I am light skinned and tend to burn easily in the sun in areas that don't normally get sun.  I ended up with a rash, rad burns & blisters.  I am not telling you this to scare you.  I am telling you this so you don't have to go through the same thing I did.  If you start using creams early and take real good care of the skin, you shouldn't have any problems.  We all get a little pink and feel some soreness or tenderness - that is just part of it and it is all doable.  It is important to keep your rad onc informed so he can minimize your SE's .  Again, everyone will react differently to rads and i hope you do well.  Keep us posted.

jo1955

susantm

AGeorgiaDeb,

I have a lovely daughter-in-law of 11 months from Georgia and got to visit there the first time last January. A lovely state!  As for deodorant, there are a few natural types that work. I can't remember the name of mine, but when I mentioned it to the nurse, she said it was fine to use. (no aluminum in it) I don't wash it off before rads or anything.

I'm only a week in, so can't tell you much about skin problems. I use Miaderm, which my RO recommended. Also be sure to drink plenty of water and eat extra protein to help rebuild the damaged good cells. And exercise regularly. Those were the things I was told.

beacher4209

what is TE? i too have tissue expanders and worried about them too!!! my skin is still bruised and i still hurt how long do they wait or do they when im still dealling with all this

jo1955

Sherryc - Thank you so much for starting this thread.  Just 4 days into Dec and I can't believe how active we are.  It always makes me feel good to know that there is a lot of love and support here.  It has really helped me get through this. 

I am staying on the Nov & Dec Rads threads.

Sherryc

susantm glad you decided join us here also.  I have had 2 tx so far.  Have had some slight SE but nothing major and my skin is fine.  Starting using the cream they gave me the day of my first treatment.  That was what the RO said to do.

beacher glad to have you here.  I did not have TE as I had a lump so don't know anything about it.  Maybe somebody else on this thread can help answer your question.  Everyone has been so helpful.

I spent the day in Gruene, TX will my childhood girlfriends.  We had lunch and laughed as we always do when we get together.  We planned our annual outing to be a big anitque show in Roundtop in April. Hopefully it is not to late to get a B&B for all of us to stay in for the weekend. It is so good to to laugh and enjoy yourself and not think about bc for awhile.

Sherryc

Here is a link if it works for a list of abbreviations on this site.

http://community.breastcancer.org/forum/62/topic/735716?page=56#idx_1674

cincilady

Has anyone heard of castor oil packs for preparing the skin for radiation?  My rad onc told me to soak a washcloth in castor oil (4 oz bottle just about does it), place it on the breast, cover in saran wrap and then put on a heating pad for 30 minutes to an hour.  I save the washcloth in a foodbag and reuse it. I have been doing this for about 4 nights until I had sentinel node surgery 2 days ago (initial results are negative - just waiting for final pathology).  It definitely make your skin soft.  Once swelling goes down from the surgery I will resume.  Just wondering if anyone had tried it.  Or if your treatment isn't starting for a while, you may want to join me to see if it helps.

Sherryc

cincilady--welcome, had not heard of that but it is sure worth a try.  I have already start tx so I'd better stick with my xclair cream the RO wants me to use.

toni30

Susantm - where did you get the Miaderm - in a store or a prescription?  I have heard from others that it's very good for the skin.

susantm

toni30, I could have picked up some Miaderm at the pharmacy, but I just ordered it online at the Miaderm website. (Can I post links here? I don't know the rules. However, it is easy to find using the name.) If you order two or more, shipping is free, and it arrived quite quickly. It is rather expensive stuff, but I do like it.

toni30

Susantm - Thanks I'll check it out!  Toni

AustinNana

Hi to All,

I would like to join the group now that I have my first rad scheduled for this upcoming Tuesday.  The first six will be boosts and I still am not sure how many regular are to follow.  My twin sister had bc four years ago and I saw what it did to her breast (same breast and exact location!).  Even with the creams/ointments she struggled with skin breakdown. 

Thanks to all and Sherry for starting this thread.  I live in Austin and have eaten dinner in Groene (Gristmill) on a couple of occassions.  Blessings to all...

elenalb

Starting Rads 12/20 (what an Xmas gift!)

Hi all,

I've been through the ringer over the past 10 months. At 57, I was diagnosed 3/23/10, > 5 cm tumor, started A/C chemo 4/10 through 6/10, bilateral radical mastectomy 7/8 (due to MUGA that went from 66% in April to 51% in June).  I was supposed to go from A/C chemo to 12 wks Taxol/Herceptin on 7/1, but my heart couldn't take it, so I had surgery instead.  Just finished 12 weeks of Taxol/Herceptin on 11/11, my MUGA went down to 38%, no more Herceptin I guess. 

But I start 30 radiation treatments on 12/20 until 2/3/11.  My poor body has been through the ringer, but I'm still able to walk, exercise lightly and work full-time (I work for myself as a bookkeeper).  In spite of having both breasts removed, only need rads on right side from collar bone down to rib cage.  I had 5 tatoos on Friday and my chest and back (in addition to a scar from armpit to armpit) looks like a tagger hit it.  After my last June A/C chemo my hair started coming back, but it has thinned a lot and is slowly coming out again, I guess from the Taxol.  Who knows, I've tried to stay strong for my husband and 21 year old son, but I'm getting tired.  I'm also starting to experience fatigue,which I haven't had since June.

Don't really have a question about radiation, as everyone's body is different, just wanted to check in on this board as I go through my third (and hopefully last) treatment period.

My husband is scheduled for knee replacement on 2/1, and has put it off once for my mastectomy surgery, getting the last two "zaps" and dealing my my DH on 2/1 & 2/2 as his nurse should make for an interesting February.

Blessings to you all.  Thanks for being here.

 elenalb

Diagnosis: 3/23/10, IDC, Grade 3, 6 of 19 nodes, ER-/PR-, HER2+++