Fall 2012 Rads girls......come on in!

Welcome Wintersocks!  Please join in!  Jpmom, really not uncomfortable. Think of having a nose plug on and a scuba device in your mouth to breath.  You hold a button down if all feels fine.  They tell you to breath out, in, out, in and hold it while the xray or radiation or cat scan is being done.  The device has a little balloon in it that expands so you don't breath until they realease it..but you are really holding your breath probably no longer than 5-10 seconds max. Had me practice for up to 30 seconds though so real mccoy is not too bad.  The arm overhead is tough though..felt like it was numb and so still I needed help getting it back down to my waist when done.  Hopefully the rest of the treatments won't be as long as the prep.  I have my choice of getting tats or markers with stickers to not lose where they are.  Any thoughts?  Only thing about the tattoos is that if they ever have to do them again they know where they were before for lining up.  But I did not think they could do rads again on same breast.  Hmm... 

Aruba- I have the stickers which I am fine with because they aren't permanent.  No swimming, soaks in the tub or hot tubs which is no big deal for me right now.  I did have one come off already but I figure they must not have made sure it was sticking completely because it came off the first day they put it on.  The rest are secure and don't bother me at all.

That's is very interesting about the prone position. Glad there is so much research being done about all this stuff, we have benefited unbelievably from the research being done over the last 20-30 years. And it will be that much better in 10 years.



This whole year has been one horrible slap in the face. I was completely healthy and in my prime. I was supposed to have 20 or even 30 years of good healthy life left. I got slapped in the face with my mortality. I wasn't supposed to have to worry about dying at this age. I was supposed to be out having fun with my children and watching them grow and playing tennis and running and working and travelling and having fun with my husband. Instead I go to doctors and get scans and poked and things cut off and skin burns and hair fall out and vomit and get my lung burned to shit and worry about my arm swelling and pain and have my energy taken away and my hormones taken away. And every lump or bump i find terrifies me. I hate what this has turned me into. And I have a 15 percent mortality in the next 5-10 years. Now that might not seem that bad but that is 15 times the mortality rate of someone my age and in my general health. A 15 goddamn percent chance that I won't see 50 or my oldest graduate from high school, let alone the younger kids or seen my grandkids. I haven't lived enough yet goddamnit. I am terrified that I am going to leave my family like my dad left me. He died when I was 9 of brain cancer. This isn't fucking fair. Fuck cancer fuck it. Stop fucking with people. There are way too many really young people on this website dealing with this shit.



Rant done. Going in for treatment number 8. Skin feels more sensitive but no redness yet. I am going for a run and spending time with my 3 year old and fuck cancer!

My RO told me it's a good idea to wait to take Tamoxifen until after. Since radiation will have it's own side effects why go through 2 things at once that can cause side effects. I hear Tamoxifen brings on hot flashes. So, having my whole body heat up when I'm already having my booblet feel like it's been in the microwave.....I can wait!

 As far as support groups goes. I went to one support group through the hospital. I was the first one there. As I sat and watched everyone walk through the door that was my mother's age...I knew I was in the wrong place. Don't get me wrong.....these were some awesome "seasoned" women. However, not only were they 20-30 years older than me, they also were MUCH further along in their BC journey than I am. I sat there and listened to their stories and was screaming inside....let me out...this is NOT for me! So...I decided to just talk one on one with the social worker through the hospital. Much better.

The other thing I found out....I work in a school district....just in the last week there have been 4 other women that were just diagnosed with BC in my district!! Now THAT is the support group I am looking for. People with similar working lives and now personal adversity. We are trying to get a group together. I think that will help me. Talk about it and I"m sure there will be some sort of group you will fit into if that's what would be helpful to you.

One last thing..as far as RADS goes....I only have 20 treatments of RADS....but I've been told my 20 equals like 30+ that others are having. In other words...I'm going for a shorter period of time with a higher dose of radiation. I believe that is why I felt the tingling day 1 and was already red day 2. Going in for #6 today. 

Dventi--I asked for prone.  Through my 'cancer team' I was given an RO.  After surgery I sat down and researched all the RO's in this center and noticed that Dr. P had done his residency at Sloan Kettering in NY.  This is a big deal to me--I was raised in the NYC area and believe that I am best served by doctors who have a diverse background.  When I was researching the types of radiation, I was led to the Sloan website because they pioneered this process.  My RO actually never offered it to me but was more than happy to do it.  One good thing is that the tats are on your back (actually the sides of your back) so you don't have to see them everyday!!  The final boosts are given supine (face up).  My RO downplays all side effects--short and long term.  I like him, but as with all doctors I feel that I have to due the research and go from there.  By getting prone you are doing the only radiation that has the least effect on your heart and lungs.  On Tuesday I go in for the practice round in the radiation room and Wednesday I will get my first dose.  At this point, my understanding is that with the boosts I will have the standard 36 sessions.  It frustrates me that so little research has been done on basing doses on type/aggressiveness of cancer.  I will let you how it goes.  If I can answer anymore questions let me know.

As an aside, I chose my BS the same way.  She was fellowship trained at Beth Israel in NYC.  Those fellowships are hard to get and they only offer 2 per year.  The fellowship was in the breast center so she basically lived,  ate and breathed breast cancer. I biggest concern going into all this was MARGINS.  I had too many friends that had to go for up to 3 re-excisions. The head of this cancer center had done a study on the fact that there are no guidelines for margins...that was a plus and told me that they were thinking of this...then, my BS had a lot training in and only does breast surgery.  I was luck, had a lumpectomy and all margins were clean.  I am thankful.

Ladyfighter, have you tried visualizations during treatments? I haven't started rads yet, so the experience might be very different. But during MRIs and CAT scans, I imagine a garden. I start with a pond surrounded by grass and a little weeping willow tree. Then I add flowers and shrubs around it. White and blue irises near the water, red tulips, pink azalea bushes, maybe a grape arbor, a bench, some cattails and ducks floating in the pond, couple of bluebirds flying by, whatever. It works for me. The music really doesn't.

I was glad to see some insights in the age discussion. I must admit to have felt pretty sad the other night, realizing that I am in "old" category since I am 63. But I have done 4 treks in Nepal in the past year, two just in May and one of them to Mustang was very challenging at high altitudes. We had our kids late too; last son at age 43 (whoa, another of those risk factors having a baby after 30, LOL). It made for younger friends for us since most parents have their kids a decade or so younger than we did so I am sure that kept us moving and feeling younger. I sure don't feel old though I get it that if you are 20 or 30 years younger, there is a big age gap. No matter what, we are all thinking of what we might miss if we die; for me it would be grandchildren since our kids are younger, perhaps missing our daughter's wedding; we just went to a wedding in March for the daughter of close friends and I was with Jana's mom when she died of breast cancer in 2006. Little did I know in March that I would have this dx. Jana wrote me a heartfelt message this week from Antarctica where she is on a research project. She knows what it is like to miss a mom and I have rambled on long enough. Off topic totally! But Monday I hope to finally get my results when I see my BS and see if it is rads and/or chemo.  

Marian 

Back from my second treatment - only took 30 minutes this time.  Also had an hour session about exercising.

Hubby leaves tomorrow, so going to be a long haul all by myself.

Hugs to you all. 

jpmomof3 - Thank-you so much. I am unsure what is going to happen tomorrow. I wonder if this is the mapping session or just consultation? Oh well, I will know tomorrow..... 

Tazzy - Hi nice to see you here too!  

Hi Havingfaith,

I don't want to say it's nice to see you here, because I wish none of us was here, but since we are . . . It's nice to see you!  

I was afraid of the tattoos  which ended up not being a big deal.  I can hardly tell where they are and they really didn't hurt.  I will have my simulation on Wednesday and first treatment on Thursday.  My RO didn't think much of thetheory of lubing up in preparation for rads, but it can't hurt, so I'm doing it.  He suggested getting vitamin E capsules and cutting them open.  I did it last night with some Aquaphor and it didn't make a mess, as I had feared.I'm a little anxious about starting, but not like I was for surgery and chemo. 

To those who have TEs, have you had any trouble with them while having rads? Were you filled before your treatment started? I haven't had a fill yet, but my PS prefers it be done before rads.

Hello everyone- I had my mapping yesterday and will start on Oct. 1st with my simulation.  I will need 25 radiations.  My RO recommends miaderm and suggested starting now.  I do hope this journey is short.

Hi Fall group!

For you, and all who join you throughout this season, here's some helpful info on the main Breastcancer.org site on Radiation Therapy, including types of radiation therapy, what to expect, and how to manage side effects.

Hope this helps!

--Your Mods

I completed simulation yesterday; I was so excited to get the process started (and soon over with) that I arrived and left with a smile.  During the simulation I tried to focus on the music and daydreaming.  My shoulder was sore and stiff from being in one position while they did the simulation.  I will need to work on stretching it more before the treatments start Monday 10/1.  I am feeling optimistic.

Sorry for the multiple posts; I hit enter and nothing happened, so I hit it again.  I got an error messages, so I resubmitted!

I completed simulation yesterday; I was so excited to get the process started (and soon over with) that I arrived and left with a smile.  During the simulation I tried to focus on the music and daydreaming.  My shoulder was sore and stiff from being in one position while they did the simulation.  I will need to work on stretching it more before the treatments start Monday 10/1.  I am feeling optimistic.