Fall 2013 Rads

And I'm with you on the cosmetic surgery. I had no idea the amount of complications surgery entailed. I just wanted two breast mounds so I didn't have to wear a prosthetic and I didn't want implants that needed replaced every 10-15 years. But what a nightmare surgery was. I see all the women who go back for fixing dog ears, and scar revision and Lipo and contouring and all I can say is more power to them. For some people surgery is just a nap and some drugs with a goal of looking as perfect as they can.  And hopefully they are happy. I just don't have the confidence or inclination to risk surgery unless necessary. I had surgery scheduled for Wednesday that I canceled. Need more healing and decision time.

I have been debating on posting this, but it really disturbed me so here goes. I started Rads on 11/13/2013, my breast cancer is on the left so my husband an I specifically asked about radiation to heart and lungs, we were shown pictures of a breast and it was explained that the beam would be going through the breast from each side and the heart would not be involved and very little of lung. When I was receiving the treatment the techs asked me to turn my head to the right, I did and I also closed my eyes, don't know why, just did. After about a week of this, I decided to watch what was going on, and found that the beam was directly above my left breast on one of the treatments. I was scheduled to see the RO the next day and was going to ask about it then. When the RO came in, he was a replacement for my regular doc for she was on vacation. I asked him anyway, and he was very informative. He told me that I was getting a direct exposure but he wasn't sure why that was, unless it was the only way it could be configured to irradiate the whole breast. He told me I was indeed getting heart and lung exposure, but it was a short exposure and I shouldn't worry about it, but I should talk to my regular RO if I had more questions. It was a short week since it was Thanksgiving, so I only had one treatment before I would see her again, so I decided to let it rest until I talked with her. On Monday after my treatment, I seen the RO and asked her about the exposure, I also told her I had spoke with the other RO. She informed me it was just a port film X-ray for positioning purposes. Needless to say, I didn't believe her, so the next day I asked the tech if that was an X-ray or part of my treatment plan when the beam was directly over my breast. She told me it was part of my treatment, that I am on a three point treatment plan. I told her that the RO told me it was an X-ray, she looked perplexed and just said no she's wrong. So I asked her how much exposure my heart and lungs were getting, she told me she would check with the physicist and let me know. I also asked her if this was a fairly standard protocol, she said yes, then I asked if anyone had ever refused it, she said no. She told me I needed to talk to the RO and she would set that up for the next day. When I arrived the next day, they took me back to an exam room to meet with the RO. When she came in, the first thing she did was apologize for not understanding what I was trying to ask her before. She explained why this treatment plan was instituted and that the lungs and heart are indeed getting radiation. The three point system is supposed to help eliminate some of the hot spots that occur in the skin. They consider this a minimal organ risk. I asked if the direct exposure could be eliminated from my treatment and was told yes it could and it would not change the effectiveness of my treatment whatsoever. I told her I wanted it deleted and she set me up with a new plan.

I feel that information has been withheld, and that I should have been able to have a part in making a decision about treatment plans, especially when they are irradiating perfectly good organs and also especially since I asked specifically about this beforehand.

Sorry this is long, just want everyone to be as educated as we can be about the things that are going on with our bodies.

Bondsy

Yes I was able to get my treatment changed and I feel much more at ease with it now. The CT simulator is not like an MRI, it has a much larger bore, mine looked just like a regular CT scanner, there were laser lights set up on the ceiling and the walls for marking your position. The whole process took less than 15 minutes. Good luck.

Finished off my first week quite well. 5/31, 16% done! There is a little redness in the breast area, but it is holding up OK.

A gentlemen was "graduating" on Friday and brought a fruit plate to share with everyone in the waiting area. I thought this was very nice and it was good to see the support that a lot of the patients give each other while going through this process.

I also start taking a shuttle to treatment tomorrow. I will have a set time now and can relax a bit more.

Hi all, I was just wondering if any of you were diagosed with a mixed lobular/ductal tumor? That was the case for me. I was told it would be treated as ductal. When I looked at the pathology report, it stated that part of the tumor grade was one, part of it was two. A small part was nothing. I was also told if the grade is mixed like that, they go with the higher one. So, officially it was grade 2. Geez!!!! Also my ER/PR were both 100%. I understand that's supposed to be a good thing. Just curious...

On another note, my armpit is feeling better and is now peeling. Come on, Thursday!! Hurry!

11 days post radiation today. This question is those that have finished their rad treatment. The color around the radiated area has lightened a bit d area of the nipple pealing. I still have the itchy sensation and at times some pain but not always. How long after radiation do you think its safe to wear normal wired bra and non cotton clothes? Going to visit my RO on Tuesday but would love to hear from some of you that have finished radiation already.

Wishing the rest of the radiant ladies lots of luck for the week ahead.

Bounce, congratulations! So very very radiantly happy for you. I'm also happy for your ro's car. LOL.

Lav, I would suggest that you wait to wear an underwire until the redness and itching is gone. To be honest, I was able to wear an underwire after 2 weeks, but have found them to be so uncomfortable now that I am used to the soft ones. I'm not sure I will ever go back....

Tanya, so glad your first week went so well.

Shine on, radiant ladies. MsP

Bluebird - I am so glad you are almost finished - you are very very brave.

I think thoughts of destruction might be my way of trying to feel in control again.

I am so lucky I finished rads just as the weather here has turned cold and rainy!

Rads Grads: My back muscles went into spasm this morning and I can hardly walk - I am so lucky it didn't happen before - I can't imagine how I would have gotten up on the table or been able to lie back or get up and off again. I don't think anyone has been so happy to have a sore back as I am today.

Are there any medications to avoid soon after finishing rads or does anything go?

So far I am managing without medication but tomorrow I have to go to work and might need some help.

Today was my last visit with my RO for 4 months and he said since I am doing so well and only have three more days of rads that maybe he should add on another week ha ha. I said ha ha catch me if you can! Last day is Thursday! It is so cold here and we had eight inches of snow last night. I just hate going out of the house but then met a woman today that was waiting for her first treatment. Feeling lucky to be almost done.

ketofan, I can relate to what you are saying. My RO actually forgot about me at an appointment. She also wasn't there for the measuring & marking for my boosts. I was so angry. Radiation is hard enough to deal with emotionally without having to put up with that crap! Colleges need to have a mandatory course on bedside manner and a side class on compassion. Period!

Tomorrow is my last day including 7 boosts. I can't wait to get the hell out of there tomorrow.

KR13 Wow! I Just met with my RO today, I will be doing my first set up on Thursday for radiation. He did explain to me about the lung and heart, which I said I was going to question that because it's my left breast. He said when they set my treatment up, there will be low dosage for the small area of my lung, and my heart. What they will do is I will blow on something to hold my breath when the machine goes by the heart, this will push my chest out and not be so close to the heart.

Rainy day, I think I have the same RO... he spends 30 seconds with me every Tuesday . They call it "doctor day" but it's more like "bonding with the oncology nurse day".

I do think he's competent though.

BTW we really might be going to the same RO. I live in Redmond WA

I am also doing deep breathing inspiration and just assumed it was the same everywhere. But it sounds quite a bit different. I have a mouth piece that fits between my lips and teeth just like a snorkel attached to a computer. Then I have a nose clip and goggles that show me a computer screen that has a breathing graph on it. I can see the graph go up and down as I breath. There is a green and red traffic light on the screen. When the green light is lit I take a deep breath and hold it until the red light comes on. Is this not the way that everyone else is doing it? It is mentally taxing because once the nose clip is on I sometimes feel panicky like I am being smothered. I have to talk to myself and remind myself that I am in control and can stop anytime. Do you feel the same way? It takes about 10 mins for the techs to set me up and then I have to hold my breath for no more then 30 sec. I have had 6 treatments of 28 so far and today I had a coughing fit because my throat was so dry from the tube. Does that happen to you?

amsm123 ans sloyd66...I also do gated breathing, but it looks like I am using a more updated version of the breathing equipment. No tubes or clips at all. I just use special glasses ( and they are not fitting well at all)and I have a screen to look at. The technician tells me over the intercom when to hold my breath and when I can breathe again. It has been pretty easy.