January 2011 Rads

michcon - My experience was similar to yours in that all the med professionals I've seen since the beginning of this journey were terrible at informing me of anything.  If I didn't ask, they didn't tell.  And the only reason I asked, is because I informed myself through this forum - - thanks to all of you for the wealth of information and details of your own journeys!!!  It made me mad that they were so uninformative.  Why should the patient have to be the one to ask the right questions when at first, no one has a clue what questions to ask?  I'm sure there are many ladies who do not use the internet the way we all do . . . sadly, they are at the mercy of the system.

I finished rads on Feb. 2 (16 tx and no boosts), and did really well through the treatments.  What no one warned me about was the 10 days since finishing.  Got terrible, terrible pain and itch in 3 spots - - under the arm, just over the incision where tumour was at 12:00, and in the fold under the breast.  Had to go to minor emergency a couple of days ago and get a stronger prescription hydrocortizone cream.  I honestly thought I would go nuts with the itch and the burning.  Only today is it all starting to settle down, thank God. 

There are no follow-up appts with the RO, only one in March with the MO, as I've been on Tamox since Dec. 23.  I really have no idea what is next.  No one has said a thing.  I don't know when or how often I'm supposed to get mammos, no mention of monitoring the uterus for SE's from Tamox, etc.  So I've scheduled an appt. with my GP tomorrow to ask a ton of questions.  She's supposed to be in the loop and has been sent all my records, supposedly.  I have a lot of concerns post tx and as I mentioned earlier, no one is being pro-active in dishing out information.  So, once again, I have to go after it myself.

Do most of you feel it is the same for you?  Do these med professionals just get hardened or insulated after awhile from dealing with so much of this? 

SUEPEN:  I have been using the Udderly SmOOth like crazy this weekend and I remembered to put it under my arm and over my shoulder.  The RO told me only Aquafor, once a day and only on top of the breast!  I did what he said for two weeks but I think we ladies are the judge of what works and what doesn't.  The cream I use smells wonderful too.  Everytime I get up or pass my DH he always says "where are you going" and I reply "lube the boob".

Penny---I had same questions as you did for post-treatment care. I was curious if they would be scanning me etc but it is not protocol. If there is something that doesn't feel right, then can talk to Doc and perhaps they will approve a scan etc. I see my MO again in June and will have mammogram in July/August. My RO said that they do not do mammogram that soon after rads due to the radiation received and potential issues with mammogram (Anyone else heard this?). My MO said---"Go live your life"...easier said than done!!

I am starting boosts tomorrow and was very grateful for the weekend as I was starting to get really red and sore under my arm and it has gone down considerably since Fri. They mentioned that tomorrow's appt. will be longer as they need to get everything ready for boosters. Sucks as I thought it would be organized in advance. My youngest is in the finals for speeches at his school and of course, it is around the same time so hoping that things move faster!

One more thing..I purchased some 100% aloe at Whole Foods to help with my pinky skin under armpit and it seems to have helped a lot. You have to keep in fridge so it feels nice and cold on the skin!

I finished rads three weeks ago and my RO is having me do a mammo the end of April and go back and see him.  He will then turn me over to my MO.  My old MO was having me come in every 2 months for boodwork which I think was an overkill as it has always been fine.  Am switching to a new MO tuesday so not sure what he will do. My BS wants me to have mammo and MRI alternating everything 3 months for 2 years.  Seems like more than others are getting so not sure on that except maybe it is because my oncotype dx was intermediate and I did not do chemo.

Sherry, as you know, we are in the same situation.  I have met with both RO and MO and the radiologist.  They have all said every six months....so yes, yours seems like a lot.  I haven't asked the BS, maybe I will do so...

Thank you Raincity and Omaz!  Tomorrow, 8:00am I will be celebrating!

It's so strange, the inconsistencies for all of these doctors!  I was not told about another MRI, but I know, per BS, I will see her every six months for two years, then once per year forever.  I think it was a mammo and ultrasound every 6 months and I'm not sure how long for that.  Meanwhile, I've had bloodwork done once during radiation and I'm kind of surprised they haven't done it again since that was a "baseline."  Also, my MO did not do any bloodwork.  And I'm starting the tamox in 2 weeks.  So strange... 

saturn - I can't remember what the bloodwork was for, but I remember that it wasn't CBC - I think it was for a few things but not a full count.  I guess my MO is assuming I am still pre-menopausal because, although my periods are not that regular, I just had my last one in December.  I also thought the MO would run a test to see if I am able to metabolize the tamoxifen well - but she hasn't done that and I don't think she's going to.  I really love all of my doctors, but sometimes I wonder what is going on.  And then I'll forget to ask them.  I need to be more diligent.  

I was called this morning by the RO nurse and told not to come in for my second last boost as the machine was down.  Sooooo frustrating as I'm so close to finishing (only 2 more boosts to go).  Oh well, I just have to extend by a day so I should be finished Wednesday now instead of Tuesday.

Pennythoughts -thanks for the heads up on post rads SE's.  Hope the itching is getting better now.

I have no idea what my follow up/monitoring schedule will look like, the only thing I know at the moment is that I see the Rad Onc in a month for a follow up.  I see the BS this week so I'm hoping he will fill me in. Tamoxifen is next for me, I haven't filled the script yet. 

Oakley, I notice you are finishing rads today (congratulations !) but you are starting tamoxifen in about 2 weeks?  Did your onc want you to have a break before starting? I'm just curious as I haven't been given much information on it.

Rachel, good luck with starting your boosts.

I had the hormone test estradiol, follicle stim hormone, and luteinizing hormone before starting tamoxifen but not the metabolizing blood test. Every two months I see my MO and he does a CBC and cancer antigen 27.29. On my frat visit he did a cancer antigen 15-3 not sue how often this will be.

Raincity again I think this is overkill but since I am seeing a new MO tomorrow will be interesting to see if he will have me on the same schedule. We are vey similar but since I did not have chemotherapy maybe that is why they are doing so much follow up on me

Victoria - I did finish today - YAY!!!   The only reason I am not starting the Tamox right away is because I'm going on vacation on Sunday for a week and we didn't want any side effects to pop up if I am away - much better to be home if there are issues.  

LuvMyLab - my boost planning session was done during the last week of my regular treatments - and it was so easy.  I didn't get any more tattoos and they just took more pictures and used paint pen to make a huge circle around my scar.  The boosts are definitely much easier - but I am more itchy in that area now.

So on the last treatment today:  machine was broken but they were able to do my boost anyway since that part of the computer program was working (strange, hmmm...).  And I met with the chief of radiation dept. because my RO wasn't in - when I asked when I could go back to deodorant, shaving, antioxidants, etc., he said "I NEVER WOULD HAVE HAD YOU STOP THOSE THINGS (except antioxidants in very large quantities)."  Well, that had me going considering the frustration I had during the course of treatment with regard to deodorant (or lack thereof!).  Oh well, I still really like them all!  I go back in a month to the RO for a check-up.

On to the next step...NORMALCY?  Oh, and they didn't throw any kind of big deal, but they did give me a beautiful ceramic heart ornament that was painted by an elementary school child.  The child wrote a little note as well.  I'm not much for emotion, but that got me. 

5 more 5 more 5 more 5 more......

Irr4993 & rachel - I have had two boost and I have not seen any problems, due to weather issues my days have been split.  I did Thur & Friday and then Today thru Wed.  Then done.  I had a big change from week 4 to week 5 where I did get bad radiation burn, RO perscribed the Silver Sulfadiazine cream.  It took as week to go from red/purple angry burn to now mostly pink and some reddness.  check out with your DR if you are concerned.