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goops
01-05-2008, 07:33 PM
Hi, I am new here. I was diagnosed with breast cancer in May of 2007, I had a mastectomy and had chemo for 5 months, I am in the process of receiving 1 year worth of Herceptin.

It was nice to find a support forum for Her-2 positive people.

I am supposed to start 28 treatments of radiation soon and that scares me more than any of the other treatments. I would appreciate any input from people who have gone through radiation.

Jean
01-05-2008, 08:50 PM
Dear Goops,
Welcome to our site. You will gain much support and information here.
I had 26 treatments and 6 boosters of radiation. It is not terrible,
your treatments will only take a few minutes. The set up will
take longer than the treatment itself.

Your first appt. will be to measure you and mark (tatoo) the treatment area. This will take about an hour.

You should know not to use any soap, lotions and deodorant's on the area that is being treated. Of course it is best not to wear a bra - a light cotton T undershirt is good. When home if you can wear nothing on
top to allow air on your skin. Your dr. will most likely give you a lotion to use to keep your skin moist. A little heads up ...I would make my appointments the very last one of the day, at my treatment center it was 8PM or 8:30 PM...the reason, by the time I was done and back home I would just get into my PJ and relax and go to bed. I had one treatment mid morning and I felt dragged out by the afternoon. The treatments will make you feel tired. I did not feel that way again since from that point on I made my appt. late and slept through the night. Also often times there are break downs and delays at the treatment center, by being last at the end of the day you will not get caught up in the delay and sit around waiting to be treated. Without knowing where you live (east coast or south/west) stay out of the sun during treatment. It is nothing like chemo, you will not loose your hair and should not have any nausea. The main reaction is feeling more tired than usual. I don't know if you work or have young children...the late appt. will help greatly.

Wishing you the best and once again welcome to her2.
Good Luck with your treatments, let us know how you are doing.

Hugs,
jean

kcherub
01-06-2008, 09:45 AM
Oh, I hate that you "have" to be here, but you have found a great group of women (and men)! When I was diagnosed and found this site, it was such a relief to be able to ask something little or something big and get an answer, suggestion, or just a virtual hug...

I was TERRIFIED of the radiation, even more so than chemo! Other than the pain of having to go every day, it was not all that bad. I am very fair skinned, and actually had no problems. I did get red, and had some very small blisters at the beginning, but nothing that required pain medication. However, it was offered should I have needed it, and I would have taken it. I was even allergic to the Radia/oplex, and wasn't able to use it. I did find out that Cetaphil cream (not the lotion or the cleaner, the one in the pot) was the same as one of the other creams, so I used that when I felt irritated.

I did not have tattoos--I just didn't want that constant reminder (as if I wouldn't think about it every day anyway, eh?). They would mark me about every other day, and it worked out just fine. So, there is an option of you do not want the tattoos. Most people say they can't even see them, but like I said, I am very fair-skinned.

I am a tad worried that I might have some implant problems down the road, but will just deal with that if I have to! The only other thing I can think of is that my surgery arm seemed to feel a little sore, which might have been from irritation under my arm, or a little lymphedema. I have no problems now, and I finished radiation on 12/19. So, you can do it!!!

Now, I will begin obsessing about Tamoxifen, which I should have already started. ;)

Take care,

kcherub
01-06-2008, 09:46 AM
Oh, I might also mention that I almost quit radiation several times, but am glad I got through it. You can, too!!!!

goops
01-06-2008, 03:44 PM
Thank you for the welcome and the info about chemo - like you kcherub I have very fair skin, it is nice to know that a fair skinned person didn't have much trouble. You mentioned implants - I was supposed to have reconstruction on Monday and then start radiation in a month. I had a false metastasis scare and so my surgery was canceled. Luckily the "tumor" disappeared and I didn't even have to have a biopsy. Now I am faced with the decision of whether I should have my implant put in before radiation or wait until after. Was your implant in place during radiaiton?

As for your advice of going late in the day Jean - it sounds like good advice except the hospital is on the other side of town and in a bad neighborhood. I think I am going to try to set it up for right after work - the Hospital is only a couple of miles from where I work.

The thing I hate most is the thought of going everyday and the fatigue, I am still getting over my chemo fatigue and I was finished with chemo right before Thanksgiving. It is now the busiest time at work - so I hate the thought of fighting fatigue. At least it will be over with in a little over 5 weeks.

How long did it take you guys to bounce back from radiation?

DonnaD
01-06-2008, 03:53 PM
Welocme! You have come to the right place for support, knowledge and most of all UNDERSTANDING. Sorry we had to become sisters this way but we are all family here. Just curious, we just finished manning the booth at the San Antonio Breast Cancer Symposium in Dec. trying to get the word out about our site. How did you find us?

Remember like chemo everyone handles radiatioin differently. Radiation for me was so much easier than chemo.You have already gotten good suggestion from the two previous posts. My hospital supplied the type of cream to use. I followed their directions exactly and had no problem during treatment. I am very fair skinned. I would suggest the same for you use the cream they provide or recommend. At first I was on a straight Aloe and then they changed it to a dense cream. I did develop a late rash after the boost was over, in the shape of the boost. The radiation oncologist's nurse was a wound specialist and gave me a moist bandage and it heal in two days. Don't hesitate to ask your Dr if anything develops. Many say they are tired during radiation, I never experienced that.

One thing I will tell you is radiation can weaken the bones in the radiated area. I was the 1 to 5 percent that experienced a fracture of the ribs. Looking back I think it was my fault. I had a bad cough from two back to back colds. I was feeling so good after that I am sure I over did it (building a house for Habitat for Humanity). It also could have been from the cough. My advice take it slow even if you feel great.

You will do fine. Please keep us posted on your progress. You can do this!
Donna

kcherub
01-06-2008, 06:06 PM
Hey! I have actually had my implants since 2002. I initially had them to correct an imbalance (it was pretty pronounced). I would talk to your plastic surgeon. I have read that some don't want to do recon on radiated tissue. So far, I have had no problems, but they do say that problems can arise much later. I just try to keep that breast massaged--like you would do after getting implants. Just be sure to meet with someone before your radiation, just so you have your ducks all in a row. I would hate for you to be planning on recon and not be able to work with the surgeon you had planned, based upon his/her opinions.

I was the rare person who reacted to the cream they gave me. Both the first one and the second one. There are tons of things out there you can use, just find one that works for you! I also made sure to get a really mild soap for showering, and didn't rub the area with my washcloth. I just soaped up my hands, and gently washed the irradiated area.

I am about two weeks out, and I am not sure if I am tired from chemo (ended in September), radiation, the cold I had for two weeks, the holidays, or just because I have become lazy. Just let your body tell you what rest you need. I was able to go to work (I own a children's boutique) every day I had radiation, except when my cold starting kicking in.

Take care,

Jackie07
01-06-2008, 06:17 PM
My skin burned a little bit during radiation in 2004. But the sample cream they gave me did the trick.

Jean
01-06-2008, 07:01 PM
Goops,
I would watch using any soap, I am NOT fair skinned I am a brunette
with med. skin tone. (Italian girl) anyway if you are fair I would be
really really careful. I was told not to use any types of soap and
I had no problems at all...be sure to speak with your dr. on this.
I did not even spray perfume on the area.

I did work during my treatments, I did slow down that is for sure.
But I also did lots of exercise and swimming. It is hard to explain
the fatigue, for me it felt like when I was nursing my son, at 5PM
each day I would have this feeling that I had to just sit down.
I did not have to sleep but I remeber when my son was a baby
and nursing that feeling of "I had enough"...well when I started the
radiation there were times I would have the feeling that I had to
just sit down and take a break. When I felt it I did just that.
Wasn't a major thing. Don't panic and think you will drag yourself through the day...but you will have to allow yourself an earlier bed time to
pick up an extra hour or two of rest. Eat healthy that is very important
and those fresh air walks are the best.

Please let us know how your doing.....and know I am wishing you all
the best for a speedy and easy treatment.

Hugs,
Jean

goops
01-06-2008, 07:07 PM
Thank You Jackie and Donna for your input, talking to others helps to put some of my fears to bed.

As for you question Donna, I was considering using some alternative cures with my Herceptin and I was trying to get information on the web as to what things will interfere with Herceptin. This board came up in a search engine. I had been considering making a cancer support board - but now that I found this one, I don't think I will do it.

Bill
01-09-2008, 05:42 PM
Hi Goops! I hope you're doing well. All I can add is that you are in my thoughts and prayers, and when my wife had a similar series of rad treatments, she tolerated them well ( a fairskinned red-head), they told her to avoid alot of sun, and after about 10 or 12 treatments, I think, a slight fatigue kicked in. Also, her rad. onc. recommended "Jean's Cream", to apply to the radiated area. We got it at a full-service pharmacy, and it was expensive, but it worked well. Take care, Bill

goops
01-09-2008, 06:25 PM
Hi Bill, thank you for your input, avoiding the sun should be easy; I live in Northern Minnesota.

I was sorry to read of your loss - you are in my thoughts and prayers as well. This may sound strange, but since getting cancer I find it comforting to pray for other people.

tousled1
01-09-2008, 07:19 PM
Goops,

Welcome to the board but sorry you have to be here. I had 35 radiation treatments and the only side effect I had was the last 4 treatments my skin got really sore. I got aloe vera from the radiation oncologist right from the beginning and used that every day. When I got the sores he prescribed silvidine (spelling??) ointment and it cleared up very quickly. The radiation goes very fast -- except for the initial set up visit. You'll do fine with it. Good luck

goops
01-10-2008, 08:20 AM
Thank you tousled1 it is sad that any of us have to be here - hopefully one day soon they will find a cure.

Bill
01-11-2008, 05:23 PM
Thank you for your kind words, Goops. What you said doesn't sound strange at all. I think as you're praying for other people, God is smiling and reaching out to comfort you as well. Love and prayers to you, Bill