May 2011 Radiation

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  • baf4292
    baf4292 Member Posts: 51
    edited June 2011

    My last boost was scheduled for last Friday and I got a call on Thursday telling me the machine was down, so I "could have a nice 3 day weekend".  I replied that ordinarily that would be great, but Friday would be #36 of 36 treatments and so the thought of delaying the finish line until next Monday was not so thrilling.  (Isn't that typical of this BC experience...you think the plan is X and then "not so fast there lady, you have this detour to make first").  The nice tech at the rad center said she would see if they could locate another machine for me, which they did at another location and I am so happy to report I am really, really done! 

    I found rads much easier than chemo, but I have non-fragile skin that held up well.  The fatigue hit at about week 20 and I still have to monitor it, but find it tolerable with well-timed naps.  Like Ton Lee, I now have a sort of abandoned feeling though, as my Rads doc has been on vacation for the last 3 weeks and I was told I would be seeing her next 6 weeks after treatment ended.  No one has mentioned how the post-treatment monitoring will go...mammogram frequency, possible MRIs, etc.  My general practitioner referred me originally to the surgeon who in turn referred me to the Onc and the Radiologist...not clear to me who is in charge now that all of the treatment phases are completed...me?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    GmaFoley, you rock!

    carberry, I'm so sorry for all you've had to endure. Seems like once it hits the fan, someone forgets to turn the fan off. I'm sending you huge hugs and prayers. 

    Does anyone know how long the numbness from the surgery lasts? It feels so weird!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    OK, Ladies. After an emotional weekend, I read your posts and can't tell you how much your support helped. I took my little Hobbitt foot and kicked myself in the pants. Then I picked myself up and marched off to radiation today with a new attitude. OMG, I LOVE YOU ALL!

    Gma, sometimes when I'm really missing my Dad, I get a random whiff of the cologne he used to wear or hear a song he used to whistle. That's when I know he just paid me a visit. We never really lose them, they just move away and wait for us to join them. Smile

    Hugs to all and here's to a better week!!

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  • ftblmom3
    ftblmom3 Member Posts: 100
    edited June 2011

    baf4292 and MomofFour-CONGRATULATIONS!!

    ROHANNA-here's hoping to a better week!!

    TONLEE-i have often thought about who MY doctor is now too because i started off with the primary, he sent me to  mammo/US then biopsy with radiologist-she sent me to breast surgeon-then she sent me to RO and ONC. now breast surgeon has told me that she will order breast MRI's for me from now on, so i thought maybe it was her, but i get the feeling after meeting Onc that since i will be on Tamox it will be him. He DOES indicate a plan as far as bloodwork and scans for the next year anyway. It IS all scary-its so ordinary for all of them, and so so new to all of us, i hate that we are even questioning this!!!!

    i have 6 more rads to go. i can't wait to finish.( i am pretty sure i have said that 1,357 times in this thread!!!)

    Have a great day everyone!!

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  • TonLee
    TonLee Member Posts: 2,626
    edited June 2011

    I am off for #26 of 28....The top of the frankenboob is red...and under the arm BUT ONLY TWO LEFT!!!

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011
    This week is going to be awesome for you TonLee... Just remember you are just a few steps away from being done! WE ALL ARE ALMOST THERE!!!! WE CAN DO THIS! EVERYONE HAVE AN AWESOME WEEK! (Even if it is coming home and taking a nap after rads Wink.)
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  • TonLee
    TonLee Member Posts: 2,626
    edited June 2011

    Well.....

    Today I was waiting to see my RO in one of the exam rooms for my weekly inspection..lol.  I picked up my ROs version of my medical file (which is three inches thick) and opened it up.

    I consulted a total of three ROs about my tx.  They gave me the "generic" form with their recommends..you know the all medical talk ones?

    Well inside my RO's file on me, there were notes from each of the other two ROs to him about me.  They were much more personal and laid out their recommended tx plan based on my preferences, history, reconstruction, etc.  (One of them even called me "pleasant and upbeat"  lol.....anyway, they both told my RO they recommended boosts!! 

    This is NOT what was in the paperwork I received from them.  In fact I argued against the boosts because:

    1:  They aren't 100% sure where the tumor was located ... since I had a skin sparing MX with TE they can only "guess."  (Which means they could miss the spot entirely, and going big is not really an option).

    2.  My current RO didn't seem to mind about the boosts, even seemed to agree with my reasoning.

    So, when he came in the room I pointed to the notes and we had a long conversation about what boosts may or may not do for me.  Long story short, I've changed my mind and decided to get them.  SO I won't be done until NEXT THURSDAY now....ugh...

    I went to see my PS after rads and he kept smiling and saying how wonderful my skin looked, how great my incision held up, etc.  I told him about the boosts, but he said he wasn't concerned since they aren't on the incision....

    I hope I don't regret this! 

    Can I get some info about boosts?  Does it totally destroy the skin?  Any info is appreciated!! 

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  • ftblmom3
    ftblmom3 Member Posts: 100
    edited June 2011

    TonLee-i had to have the boosts in the middle of my treatment, (because i was certain my nipple was going to fall off) and my RO thought my skin needed a break. I thought the boosts were soooooooooooooooooooo much easier than the whole breast treatment. the skin in that area was darker and still is, but as far as the skin and the fatigue....i would take the boosts over the whole breast treatment anyday!!! JMHO!!!

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  • GabbyCal
    GabbyCal Member Posts: 277
    edited June 2011

    TonLee - I had 8 boosts and it was the easiest part of radiation for me. During the week-and-a-half of boosts, the skin that was outside the boost zone started healing. It was nice to have the techs, nurses and doc continue to check the rash and provide advice on it during the early healing process.

    I had a lumpectomy, so the boost area was an oval around the incision. That turned red, but no rash and not burned. They gave me a pillow and I got to lay on a little foam pad instead of on a sheet over the metal table.

    When I had the setup for the boosts done, the tech explained to me that the whole breast radiation uses electrons which go straight through you (and anything else) at the same intensity. The boosts use protons which can be controlled more precisely so they are not only specifying where they go, but how strong they are for how long. They target exactly the spot they want, then they dissipate.

    Hope this helps and hope all goes well. Sounds like fate intervened when the doc was running late with your file on the table. 

    I truly don't think you'll regret it. 

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  • TonLee
    TonLee Member Posts: 2,626
    edited June 2011

    Thanks FTB and Gabby, that was awesome to read!!  I didn't ask about the difference in beams, or whatever they're called....my RO believes the research shows a smaller percentage of recurrence with boosts than without, and he said the real difference seems to be in "new" local regional cancer within the breast....

    Gabby, I am one of those "Things Happen For a Reason" (THFAR) people....lol.  My husband says its just rationalization, but I don't think so...and even if he's right...so what?  Everyone has their rationalization of choice....I choose that one!

    Of course I'm not so fond of THFAR when the reason means I need to suffer....

    What originally made me think I was being over-treated with boosts is I thought/read one of my second opinions that said he wouldn't do boosts...(looking again, he referenced the axilla in the sentence before, so now I think he meant he wouldn't boost the axilla.)  Another reason was, my RO is just out of residency, and when I was on the fence about rads I mentioned my fear of my incision opening and having to stop tx.

    He said, "Oh no.  We don't stop."

    RED FLAG!

    So I said no boosts.

    Well today as I was arriving, a friend of mine (bigger tumor, more nodes)...was leaving after her one week post rads check-up.  She was scheduled for 28 plus 5 boosts.  Our RO stopped at 22.  Didn't delay or post-pone...flat out stopped.  Her skin isn't that bad, she showed it to me (She's a black woman and her skin has white stretch marks on it, that's it).  I asked why they stopped and she said "He said I've had enough rads..that the area is treated appropriately."

    I don't know what that means but it told me his "we don't stop" mantra to me wasn't necessarily dogma.  Crazily, it made me trust his judgment more.....

    Oh well...we'll see....this may be the one thing that does my TE in...but THFAR. :)

    Thanks again ladies....

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  • carberry
    carberry Member Posts: 1,153
    edited June 2011

    Tonlee   we were on the same schedule, as far as I know I will be done on Fri, cause of Mem day off.  We talked of boosts on the very first meeting but i guess he decided otherwise, cause havent heard anymore of it.  My skin has just started to be beet red, the whole breast, kinda scaring me, really dont want to destroy my new boob!  3 more to go and pretty sure I am done since they gave me a survey to fill out about my experience....like I was at a resort or something. HA

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  • TonLee
    TonLee Member Posts: 2,626
    edited June 2011

    Carberry,

    That's great!  I'm going to ask for some clarification tomorrow..on a few points I've researched since I've been home today....

    I'm red under the arm where the bolus lays, and right between my breasts where I burned really bad as a teenager once...the rest of it looks ok....I don't want to lose mine either, but I'm not holding my breath.

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  • sagina
    sagina Member Posts: 1,219
    edited June 2011

    Friends~ this is from my caringbridge.org journal.  I was in my first week of radiation.  Here's to hoping to cheer you up a bit, and knowing you know exactly what I am talking about..... 

    Yes, I am in the deep fryer of life called radiation....funny that the machine hummmmms instead of making a noise like zapppppppppp!  I think they should attach a sound effects track to the machine so each time they radiate me, I can get entertained.  I can hear it now, click click "love that chicken from popeyes" or click click "would you like original or crispy?"  Original please, can I go back to original?

    I also think of the stars wars contraption as a time warp machine. Each time I enter I leave a little older, older skin that is!  I have a sunburn where most never even tan! and yes, ouch just as you would imagine.  I mean that's what bathing suits were invented for right? To cover up the parts that should never be exposed to UV rays, ouch I moved when I laughed!!!

    So radiation....as I posted on facebook, first they fry my brain with chemo, now they fry my......lol.  Yep you got the point.  Radiation is the science of delivering the maximum amount of radiation possible without causing major damage to organs while killing the crap out of any cancer cells left - that's my definition.  The machine used for this is something straight out of Star Wars.  As I was laying there, I really started to think how scientists and mad science fiction film makers probably have been meeting every month in a secret society, sharing ideas - probably called the fraternal association of research & theatrics, you know F.A.R.T.  I mean the machine itself I thought was going to start talking, as if Tom Sellecks "Kit" found a new job, thank goodness it didn't I might have made that 15 foot leap down.  The machine has a glass pane staring at me, with quite the reflection I really didn't care to see, I am scary looking.  Then the arm rotated all the way around for more x-rays, and all of the sudden the silver part of the machine comes around and there in front of my eyes was a very clear reflection of some horrid looking creature, bald, big, and with marks a lot all over, oh what a sight, so from that moment on -  like how I watch scary movies, I closed my eyes, tight!

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  • GabbyCal
    GabbyCal Member Posts: 277
    edited June 2011

    I have a question for the group - have any of your doctors advised you to massage your breast after radiation? 

    No one in my RO's office has said anything about massage, but I've seen mentions of it on some of the other discussion threads. I think the idea is to minimize build-up of internal scar tissue???

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  • achpurple
    achpurple Member Posts: 290
    edited June 2011

    GabbyCal:  There's something about it on the "After Radiation" thread.  Unless that was you, I don't remember who posted about it.

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  • sundermom
    sundermom Member Posts: 463
    edited June 2011

    My PS told me to massage my implants at my exchange follow-up appt.  He said it would break down the scar tissue and help things to "drop and fluff". 

    Tammy 

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited June 2011

    GMA...............my husband died of Pancreatic cancer 20 years ago at 57............Its been a lonely 20 years, but thank God for my 6 kids...............I wish everyday he was here, and going through this alone (all married children) who have famlies, so I have my own home...........made it a little harder to deal with.....................Too much time to think about it when everyone left.  They were great.................some better then others....................but not a constant companion, but I got through it........................hugs

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  • ftblmom3
    ftblmom3 Member Posts: 100
    edited June 2011

    4 more to go!! Doc told me on Monday i should maybe take thur and fri off, and do 4 next week, but i think i got her to agree to maybe friday off and just 3 next week. Thats my plan anyway. But boy oh boy did i wake up with my tumor incision scar burning and hurting at 3 am this morning!! i don't know if i was sleeping on it wrong or if it has just had enough. I actually took a percoset at 4 AM because i needed to go back to sleep and figured it would make me loopy enough and it did. I am not a pill popper, they are still my prescription from my surgery on 3/30, but i have to say it really did the trick. it looks like i am getting those freckle things around where they did the boosts. great, that happened before my nipple became a total mess a few weeks ago. Determined to do tomorrow, rest for 3 days and FINISH THIS on Wednesday next week.

    GabbyCal-no one has ever said that to me either, and i have wondered the same thing. My underarm is starting to feel pretty tight. Maybe we could request a handsome sweet intern to massage us???

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011

    GabbyCal - in conversation with my RO, I mentioned how I hate the aquaphor because it is so goopy and I have to rub my breast more to get it on..... He said, "That's the point...you need to 'massage' it into your breast " hence you kill two birds with one stone...

    Ok They gave me yet another cream - Radioderm - the burn pain has hit yesterday.. the cooling gel part of the Radiaderm feels so good... I guess the other lotion I'm supposed to use 3 times a day?? That was the instructions on the 5 day sample kit they gave me today anyway.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    27/30...THREE MORE TO GO!  You know, the machine has worked flawlessly through my whole breast treatments (and you guys were freaking me out with all the "machine broke" talk!) but for boosts...not so much! They had to stop and restart once during my first boost, and today it took like 5 restarts to get me the correct dose.  It should just be one long delivery. Freaks me out when the machine isn't workin' right!

    So, the rest of my boob is like a desert....so dry!! Whereas during whole breast treatments I could hardly get it to absorb the creams in some reasonable period of time, now it just SOAKS IT UP like it's dying of thirst!  So crazy...

    I've been working from home so my computer time hasn't been personal time so I've not been around as consistently. I'll have to catch up, but CONGRATULATIONS to those who finished in the last few days! 

    Oh, and scratchers have been a bust for WEEKS!

    TONLEE:  Isn't tomorrow your last day now?? Laughing

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  • TonLee
    TonLee Member Posts: 2,626
    edited June 2011

    Tina,

    3 more woo hoo!!

    No, I changed my mind and decided to do boosts....long story (covered though earlier)....so NEXT Thurs. is my last day...

    I WON $5...I WON $5....that's $15 total now.

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited June 2011

    ToniLee, good for you ...........................I still have to collect my money, or buy more tickets...............I did really well with mine.............93 dollars and 1 free ticket................Only paid 48 dollars for the scratch offs..................not a bad deal...............

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  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited June 2011

    guess who has 1 and only 1 more radiation left!!!!! ME!!!!!

    I am excited but torn at the same time.

    who is going to ask me how i'm doing all the time?

    who is going to check on me?

    i went through this after chemo. and i knew i would when radiation is over.

    so . tomorrow after my final treatment, i am going to make boobie cupcakes for the techs!!

    then i have an excuse  to go in there friday Embarassed

    but my techs were so wonderful, that i am thinking about pursuing further education and going into radiation therapy. my techs even said they would get me a day pass to come "hang out" with them for a day so i can observe the inner workings of what they do.

    plus i think i would be an excellent advocate for cancer patients,, being one myself!Wink

    the techs seemed really excited when i told them this, and were just so outgoing about coming in and spending the day to see if it is something i want to pursue............

    congrats to all who have finished, and to all who are close.... hey it really does fly by!!

    many gentle hugs--Angel

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    CONGRATULATIONS Angel! That's awesome!  I'm way jealous that you are FREE before the weekend! 

    I finish on Monday; I don't generally cook but Ducky's earlier posts reminded me of my mother's super easy yellow cake with lemon glaze so I'm going to make 'em one on Sunday! Hmmmm...might make 2 and take one to work, too!

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  • juliet62
    juliet62 Member Posts: 3,412
    edited June 2011

    congrats angel, i'm so envious! enjoy your free time!

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  • carberry
    carberry Member Posts: 1,153
    edited June 2011

    LAST DAY FOR ME!!  Was really grumpy yesterday...hmmmm...my poor DH.

    hdangelbaby   thats a great idea, you would be a great advocate for the pts  I think my techs seem like they just go through the motions, like they are bored,  no emotional contact to the pt at all.  The social worker that was connected to the clinic was the absolute best though...and i didnt need any of her services, but she always spoke with me and asked about how I was doing emotionally and financially...the whole package.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011

    Congrat Angel and Tina on monday!!! - You are proof that I can do this!

    I have started working on stained-glass painting on a cookie jar for my dear team.. The nurses that helped me through my hard time in the beginning are getting needlepoint bookmarks.. I have one of those to finish.. BTW I have done this week without a nurse escort going into treatment.  The techs seem to know the drill: help put my right arm into the mold and blare the Christian music station... that seems to get me through.

    You Ladies are Awesome!!!!

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  • pixelsupply
    pixelsupply Member Posts: 62
    edited June 2011

    CONGRATS ANGEL AND TINA YEAHHHHHHHHH

    I'm done! YEAH! Had my last rad today...in fact the entire cancer treatment (for now) is over! I started this journey over a year ago...I really can't believe it...It took my hair, my boob and 1 year of my life and most of my money! But I am still here...now onto tamoxifen and all that joy...oh and lets not forget the reconstruction. But no more toxins in my body and no more doctors (at least for awhile :) YEAH! YE FRICKING YEAH!

    So had 38 sessions, 25 whole breast 25 superclav and 7 boosts, (got them together) and really not bad. Some peeling under my breast and around the SNB scar under my arm, and the clav is super red right now...but no pain...so far so good :)

     Here's hoping the rest of you finish soon! 

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  • juliet62
    juliet62 Member Posts: 3,412
    edited June 2011

    congrats to all that have finished, will be there in 12 more txs

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  • GabbyCal
    GabbyCal Member Posts: 277
    edited June 2011

    Congratulations Angel, Carberry and Pixels!!! Cheers to you all.

    Angel - good idea to look into rad tech work. The techs who worked with me were all so wonderful, I was thinking what a great line of work they're in. A place where you can really do some good and help people.

    I'm one week out from my last treatment. I warn you the first few days were a bit of an emotional roller-coaster. But just a bit. I sort of crashed at first which I attribute to overly high expectations. After the first 4 days, I really started to get my feet back under me. My interest in projects I put on the side-burner during my 7-months of active cancer treatments is coming back.

    All my best to all of you who are finishing up. May your skin be smooth and silky and may this be your final encounter with the cancer beast.

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