MARCH 2018 starting RADIATION

Kay, thanks for inquiring.

I spoke to the radiologist resident and expressed my concerns, saying that I had heard that other facilities only do x-rays once a week. She said most facilities snap a film during the alignment process without saying it's an x-ray to the patient. She said the large battery of x-rays are done once a week but it's not at all unusual for the techs to take an x-ray to ensure everything is lined up before treatment. She kind of was like, well, compared to the radiation you are getting in treatment, one partial chest x-ray is nothing. Great answer

The RO also said that it wasn't unusual and I will find that they won't be taking many more except once a week. They both kind of poo pooed my concerns, or rather, brushed them off as part of the process. So, there I am. Tomorrow is day 5 for me, so guess what? I'll be getting the full slate of 'em. Yippee

Thanks to all you ladies for your input, Veeder, Marigold, flowergal, Beaverntx, metoo, KathyM7 and Kay. It's so crazy how different our treatments can be. Personal preference of the RO/facility? Cancer type? Machine manufacturer? Who knows!

I'm going to submit to all without protest. Can I tell you that I'm a little concerned with being too much of a squeaky wheel and landing up some doctor's blacklist?? My RO is very reassuring, the resident was somewhat less so. I'll see him again on Thursday so I'll try to (gently) pry out more information on my rads, like a written plan which I have yet to see. I asked if the boost would be given on the same LINAC machine and he said yes. I was sort of imagining a smaller (or larger) machine that would really drill in there but alas, nothing as exciting as that.

I met yet another member of my team today. I also noticed that there is one guy who stands in a dark room near the exit to the treatment area and stares at a computer screen. Who is that? The dosimetrist? The physicist? The janitor checking his social media feed? Inquiring minds want to know! I'll ask tomorrow

Edited to add: also, once I'm all lined up and ready to go, one of the techs drapes a warmed white sheet over me, but in a material heavier than a bed sheet. More like a bathtowel that's not terry cloth. What's up with that?

Paco--Different treatments may be more that we and our cancers are not the same than anything else. It is rather amazing to me how much the treatment can be individualized--thank goodness for computers that can help deliver very minutely planned rads.

When I asked about a copy of my treatment plan the astonished answer was that it was all computerized and not in form to print out. I was given details however. Had my first boost today and it is the same equipment but the target area is much smaller, essentially the lower half (or what's left of it) of my breast. I think it may take less time than before but today included "pictures."

So many differences in our treatment(s)!

I mentioned this to my RO when I first met him. He said that the same exact type of BC with a single degree difference in Grade or Stage will have a different treatment. As to approaches, I asked him about my bolus. It's made of a lightweight plastic/wax combo that was molded onto me while warm and left to cool. I've read other women describing their bolus as a damp towel. My RO said there are many different approaches and it's often an institutional preference more than anything.

I have brain fry today, so bear with me.

I get X-rays every session. I was told that up front. They take one or two to make sure I'm correctly aligned. Some days, I feel the bed being remotely adjusted afterward. I'm not concerned about the extra radiation. I'd rather that than risk damage to my heart or lungs.

My RO scared me _bleep_less yesterday. I had my weekly checkup and near the end of it, he mentions that he's looking into additional surgery for me to remove more nodes. He says it like I already know this, mentioning a consultation I had elsewhere in January. ??? My consult confirmed that my surgeon should've taken out more nodes during my BMX but given my biopsy, breast MRI and PET scan results, there was no reason to suspect additional positive nodes.

I get back to my room yesterday after my checkup and just want to take a nap. My phone starts ringing. It's an unfamiliar number and whoever it is calls repeatedly without leaving a message. I turn my phone off and get some sleep. When I wake up, I've forgotten my phone's password. Stress maybe? Eventually, I figure it out. The RO's receptionist had left a vm saying the RO was trying to reach me. He was the repeated hang-ups. He called from his private line. It's after 5 pm. The phone banks are shut down for the day.

I didn't sleep much last night.

When I talked to him this morning, that pressing, incredibly urgent reason he needed to talk to me less than two hours after seeing me was ... to tell me he wants me to get a CAT Scan. Um. I was back in there today and I bet the clerical or nursing staff could've handled telling me that just fine. In fact, probably better than he did.

On the upside, I had a checkup today with my MO. My arm pit was thoroughly examined and nothing was found. The RO thought it felt "bumpy." And I don't think the MO's nurse practitioner (who met with me) was happy to find out from me that the RO is saying I need surgery. He should've informed the MO and that's a surgeon's decision, not his. Her advice was that the CAT Scan can't hurt but don't decide anything without consulting a surgeon, my outside consult and hopefully the MO as well.

10/25. I'll be halfway done on Friday. Bright red, feeling tight and tender. But with snow predicted for overnight and the rest of the week, at least taking it easy shouldn't be too hard.

My consult went great. I really like my oncologist. I really don't care for the big hospital atmosphere . I have had two radiation treatments so far. I'm starting to get sensitive already. I just got rid of that feeling from the surgery and was healing so great. Betcha I don't make it the week and I will be wearing no bra. I'm due for 21 treatments, the last 4 are boosts.. I'm using galaxal cream so far twice a day. Will see how I make out with it. I started using it a month ago. My Rad appointments are all over the place , so I can't even do the free yoga and exercise they have. You have to attend all the classes , so I guess this is out . It cost too much to join a gym where I live and can't afford that. I did however sign up for Look good feel better, a 2 hour makeup sessions with others. So far I'm ok other than so tired.

Hopefully everyone is having a good experience with there treatments. Wishing everyone the best.

Nancy - thank you for the suggesting taking the underwires out of a bra you already own. I did that this morning, it works great, and I have one less thing to worry about now!

Beaver - I concur: I've only been wearing a bra approximately 5 hours a day (at work). I can get away with going braless (small cup size) but have felt vulnerable since the lumpectomies and radiation. I feel better having my breasts semi-confined with a came or sports bra-type garment. Under-breast shingles sounds painful, btw!

Feline - <hugs> ugh. I've had so many admin/communication hijinks - it was my downfall last week, I just couldn't cope with one more thing. One of my pet peeves has grown to be conflicting information between oncologists and their staff, as well as their inability to contact me without it being a scene from The Three Stooges. This is not all communications, nor all of the (wonderful) people I am working with - but enough to raise eyebrows and irritate me often. I did not know it was called a bolus - I curse mine often - however my spine was curved on the day they molded it, it is not curved that way now and digs into my back during rads.

Paco - the mystery of the X-rays. My radiation techs did say it was different per clinic. I don't blame you for wondering and completely stand behind you asking until they answer you in a way that makes sense to us as patients, rather than radiologist technicians. That said, I fear I am the squeaky wheel, too, but I'm persistent. I just tell them "I know I am asking lots of questions - I'm sure I'm not the first to do so - I need to understand what is happening." They either get it or not as human beings, but as professionals I expect them to answer.

I am so grateful for this topic and the women who post here. Thank you, Veeder, for starting it. I need a safe place to vent and to ask questions. I learn so much by reading your posts. More importantly, I don't feel alone. Or neurotic for wondering things that are 100 percent legit to wonder, but until I see that I'm not the only one doing so, I sometimes doubt myself.

When my RO suddenly and randomly brought up more surgery on Monday, I was so confused that I reacted by asking a few questions and later getting angry and scared. I've learned that even in a place where emotions should be okay, that an emotional woman is still taken less seriously. So I vented here and to a friend and formulated a plan. Step 1 was contact the consultant from my second opinion.

I heard back from my consulting oncologist (CO) yesterday. I don't need more nodes removed. The correct ones for my type of breast cancer were removed. The CO will be contacting the RO to discuss this. The RO told me his thoughts on surgery were based on a written summary from the CO's report.

Hopefully, this is all quickly resolved and an unneeded stressful distraction's put behind me.

So many of you are getting close to the finish line - congratulations! It is so helpful to read about others experiences and kind of watch when redness and itching have appeared if at all. I will got to 8/30 today so still ways to go -I will finish May 7th if every appointment goes as scheduled. I periodically think I get itching and things look pink but then I realize it is just normal and nothing yet is happening.

I am lucky as I have said, am able to work from home during treatments. I have not worn a bra since starting treatment on March 27th. I also haven't done too much except work and go to the center! When I visit my parents or do routine things like run to the store I just keep my winter coat on (yes, it is still winter in Buffalo). My husband and I walk as often as possible and even then I go without! I never thought I could or would feel comfortable doing that. And I won't be able to when the weather gets warmer and the bulky clothes and coat comes off. I do have a few soft cotton bras I purchased specifically for this purpose but I feel like going without is actually helping keep everything from getting irritated.

Good luck to those of you in your final series of treatments- it must be a huge relief and you probably will feel a bit lost initially without having this strict schedule to abide to. Especially those of you that have had to be away from home - what a wonderful thing to just be home and relax again and finish the healing process!

Hi Ladies, Hope everyone is doing as well as they can.

Today is 13/30 almost half way there. So far no real issues, just getting a deep pink color but no pain. I get my X-rays every Tuesday, and I see my RO on Wednesdays. Which they told me before I even started treatments. My RO gave me a hand written and hard copy of who, what, when and how much and went over it all before hand so I've had no surprises. I am grateful for it all.

Kaywrite, I'm glad you liked the bra idea. They are way to expensive to just get rid of.

Hope everyone has a easy and pleasant day.

After 16 sessions, I not only have redness, itchiness, and burning in the treatment area as a whole but I, too, have the little bumps others are talking about, primarily around my areola and under-breast area. They seem to be calmed by the steroid cream my RO prescribed and the Miaderm that he recommended (I use that three times a day). The worst areas are the under breast where my braless breast touches my chest and my nipple, which can barely stand being touched by fabrics. Even so, my RO told me today that my skin looked "great". We were both expecting worse, I guess, because I have such fair and sensitive skin.

Just had 18/33 today. My RO thinks my skin is not red enough, so she is adding a Bolus to my treatment tomorrow. I see what she means — my skin is just a little bit darker and it doesn't hurt or itch or anything. It's just a bit sore. And I understand that this is necessary to catch stray cancer cells, but now I am afraid of rads all over again. Obviously, with my skin not getting a big enough dose, I have no idea what this really feels like yet, even though I am so far in. I am about to find out. And what if she decides to add to my schedule? Has anyone had this happen to them? Did they have to have additional treatments? How bad did the Bolus make things?

But I asked my RO a question today that i've been thinking about for a while and I thought i'd give the answer here, in case anyone else is wondering. My last 6 treatments will be boosts to the area where my primary tumor was. So I wanted to know why I am not getting a boost on the spot where my nodal tumor was? My lymph node had a tumor half a centimeter in size. Not just micromets. She said it's because that area of the body can't take this much radiation without injury to nerves and other important structures that could paralyze the arm. Also, recurrences apparently occur where the primary tumor was first and can spread from there, but they will not start in the lymph nodes.

And here is another question. I asked if the radiation was affecting my gastrointestinal tract, because I feel mildly nauseated after each treatment, for about an hour or so. My RO said the radiation beam is tightly targeted and does not hit anything else. Not my stomach, or liver, or pancreas, or anything else below my chest. But if that is so, why does everyone have to get out of the room before my treatment begins? I had no chemo, so it's not that. Does anyone else have nausea? My upper chest is getting rads, too, all the way to the clavicle and even a bit higher than that, plus breast and underarm. I think that is called Level 1,2, and 3. Could this be a thyroid issue?

WOW, Marigold, that is so crazy that you have to let them know where the treatment should be. I can't really tell what is being radiated or where my radiation should be (I think mine was at 9 oclock on the right breast, that much I know). But I do agree that the RO should listen and sometimes, actually does. Today was day 8/20 for me and again today, no "pictures". So I think my squeaking got me some results....

... having said that, I am mildly nervous now without the x-rays they aren't radiating the exact location...? Nope, not gonna go there.