MARCH 2018 starting RADIATION

Hi Everyone,

I am glad I learned to speak up to the techs because today they started marking on the opposite side from my incision and I questioned why. The girl just said "thats what the planning team drew up." I started to get very anxious and again asked why . The tech then said they would check the xrays and make sure all was correct before doing the boost. She came back and FINALLY took the time to explain that they would be hitting the tumor site from both sides and then proceeded to mark the area all around the incision. I have my appointments at lunchtime so I get new people and I am a worrier anyway so this really upset me. I will be VERY GLAD to be done with this .! Monday will be my last day. I will get to do a survey online afterwards and boy, do I have some suggestions! Hope you all have a good week .

Veeder, I've got my fingers crossed that the worst this is, is stressful. I wonder if the doctors truly understand just how nerve-wracking scans and such are for us.

I've been busy trying to sort out what my RO meant last week when he said that I probably need my axillary nodes removed, what surgeon he wants me to use, and that my consulting oncologist said things he didn't.

Long story shorter, the RO now says he was quoting the CO's report to tell me the CO doesn't think I need surgery. Huh? RO said the opposite last week and then assured me it was true when I replied that no one's ever mentioned surgery before, and then he asked if so-and-so was still my surgeon (and took my blank stare and incoherent babble as a yes)? And now claims to never have done so? Blech.

RO apparently forgot that he asked my health insurance co. to authorize a global referral to the surgeon. The insurance company mailed me a copy of its approval. That arrived Saturday along with an outside agency's approval of the CT scan that the RO wants. RO told me I need a CT scan on April 3^rd. The approval letter was postmarked April 3^rd. Does anyone else's insurance company move at the speed of sound, especially on routine matters? (face palm)

I'm getting the CT scan. But the RO has completely destroyed my trust in him. This is a doctor who did an "exam" yesterday through my T-shirt to justify his actions. He insists he can feel "nodular activity." I don't even know what that means. In February, he declared me disease free. What's changed? If there's something in my rads' X-rays that concerns him, he should tell me that.

My mother thinks it's "refreshing" he took "took initiative and acted upon his beliefs." I think he's a slick liar who abused my trust.

I have 10 treatments left. Nothing better interfere with my finishing them. 13 months of active treatment is more than enough.

Done!! It feels really good to be done, and very emotional - had a few tears when the machine finished the last "shot" and also when I rang the bell. I took treats for all the amazing people at the clinic.

My boosts were just from one direction directed at the scar/tumour bed from almost straight above. I guess it depends where it is. I was worried about it aiming at the heart and asked about it: they said the boost rays (at least in my case) are electrons and don't travel very far below the surface.

Hang in there ladies!

Congrats Kathy!! I will be finished in 4 days .Then f/u with med. oncologist for hormone blocking med.

Good luck to you.

Marigold - I am so much worse under my breast today. My "burn"??/raw spot underneath has only gotten bigger. Because I'm "busty" (as the radiologist said), this is kind of common. The raw spot under there kind of stings...kind of itches...and is generally uncomfortable, but not horrendous. They gave me a prescription for a steroid pack to try and calm it down, plus some Aloe Vesta moisturizer to use, in addition to the Inter-Dry cloth that has silver in it and is moisture wicking. He again mentioned that he thought my bra was too tight and I told him I hadn't even worn a bra in a week and a half. He keeps suggesting I go braless too. I am ok with it most of the time (especially since it's been cold and I could wear sweatshirts, but I won't be next week at a professional conference.) In addition to the topical stuff and prescription, he is going to try to see if they can do my boosts next week and give my breast a chance to rest and heal before finishing my last ten whole breast treatments. If this all doesn't help, they'll move on to the Silvadene? cream (is this what you are using?). This is exactly why the RO had me go to 33 treatments instead of 20 to help try and prevent some of this. Darn my mom and her big boobed genes!

17/33 done

Congratulations, KathyM7! I can hardly wait until I can say I'm done too.

You said: "My boosts were just from one direction directed at the scar/tumour bed from almost straight above. I guess it depends where it is. I was worried about it aiming at the heart and asked about it: they said the boost rays (at least in my case) are electrons and don't travel very far below the surface."

That is exactly what my RO told me. My boosts are at the 10-12 o'clock position but they are not as deep as the whole breast treatments because they use photon rays for the whole breast but electron rays for the boosts.

I'll be done soon. Only two left!

Petey and Marigold - seems we are all getting hit about the same time. So far I don't have any terrible spots but redness and itchiness definitely increasing daily. Petey - have you tried any pure cornstarch to try to keep the area dry? I do sprinkle some around underneath my breast and it seems to help some. I also sometimes sprinkle it on a soft cotton cloth and just keep it underneath my breast when I am home and sitting around. I don't think much (other than time) will really heal so all we can do is try to keep the discomfort under control. The prescription strength hydrocortisone has also been pretty good to calm the itch but really trying to reduce any moisture to keep the rashes at bay.

Anyone else notice odd patterns in billing for treatments? I would expect them all to be the same amount except for the one day I have extra pictures and see the RO. So far I see 3 different amounts but the dates don't line up with where I would expect additional charges. I'll ask of course but just curious if others are seeing stable or changing amounts. Like we don't have enough to deal with now I need to talk about money - yuck!

BOOSTS: I am starting boosts tomorrow and have asked to see where the clips the SO left, and for them show my exactly where the .02mm dirty anterior margin was. They showed me the planned area for the boosts today and it looks like my whole breast! ??? Anyone have any experience here?

AFTER RADIATION: How is everyone handling what comes next? According to my SO, I'd go to RO, them a Medical Oncologist - but no one seems to be at the wheel here. I guess I thought they'd send me to someone specific, but the RO just gave me a blank look when I asked what was next and said the SO would have probably set that up. Yet today in my patient portal I get a message from "scheduling central" (which is a nightmare) with a string of emails that includes a referral request from the RO, for an unnamed MO. Hitting on my nerves a little.

BILLING - For my sanity I've decided to not look at anything online from my insurance company unless I get an EOB (from them) with a corresponding bill (from Emory). I maxed out of pocket expenses in January, so if I get a bill someone would have gone out of network without my knowledge, which would be awful. I already have to file a dispute/appeal with BCBS for telling me (and their own BCBS nurse, who did the investigating for me) the Genetics lab was in network, and then sending a letter stating they were out of network. When I called the nurse back to ask WTH, she agreed her own customer service rep told her it was in network, but I'd have to file a dispute. So I get to talk with these people on the phone, which hits on my nerves a LOT.

Just about everything involved with breast cancer is a stressor - they come in wave after wave. I've often thought there was such a gap in the great care we receive in person, while the people who don't have to face us are less accountable for their actions and are the cause of a lot of anguish. It seems cruel, but how to fill that gap, I don't know....

Hi Kaywrite,- I had my markings and 1st boost Tues day and the marks are also covering a larger area than I expected. I thought it would be just by the incision,' but realized the incision is just the entrance to the tumor and I know the surgeon did wide margins to make sure they were clean to avoid a second surgery. I made a post earlier this week about the process so won't go over it again, but the techs explained they were hitting the bed from both sides so I'd rather they target more than less.

At my post op surgery visit, the surgeon set me up with both the MO and RO and I saw them the next week. The center has electronic records so all my notes are available to all providers. As to billing, I have medicare and a supplement ( thank heavens) and so far since January, the $ paid by the supplement is more than my yearly premium. At least that's one thing i don't have to worry about.

Congrats bevearntx on finishing! I have only 2 to go.

Veered, the updates on your progress regarding skin reactions are helpful to me because i have some of the same issues. I also have little acne like bumps but breakdown and lots of redness. So it sounds like time will heal this.

I'm done with rads but not celebrating.

I have a recurrence in my nodes. Until I have a PET Scan in two weeks, I won't know if I'm still Stage 3 or Stage 4 with mets. If it's local, then the nodes will be removed. My body needs to be healed some from rads if that happens. Also, since I have new positive nodes during rads, it probably isn't working. If cancer's found elsewhere, I'll begin palliative care. I'm not ready to die, but I don't want to do anything and everything to get more time. Quality, not quantity, matters most to me.

FelineMum

Echoing Veeder--so sorry that you are facing even more challenges just when you are at the point where you thought you could have a breather. Please keep in touch and know that we are rooting for you. Totally understand quality vs quantity.

FelineMum - so very sorry to hear about yet more stress after such a difficult year. It would be nice to think there would be a grace period of no new issues for at least some period of time for all of us. My Mom had a distant recurrence and is on amazing chemo and hormone drugs (all pills - no IV) that have kept her metastatic cancer at bay for over 3 years. no hair loss, no real SE except some memory issues and occasionally nausea. She is 81, golfs several times a week and all of her liver tumors have shrunk to almost nothing. I sometimes wonder why they don't use some of those easy drugs earlier when I hear about some of the very difficult chemo treatments people are going through at earlier stages.

We are fortunate that there is constant treatment advancements and new medicines all the time. I thought I would lose my Mom within 18mos t0 3 years after hearing her diagnosis. But, she is doing great and I certainly hope whatever you are dealing with is easily managed and you can get on with living your life.

Hugs to all of you brave ladies as we head into a much needed weekend. Rest and put yourselves first this weekend!