Spring 2013 Rads

Betsforbama...I will be at the Kirkland clinic on Acton road...I hope to have a good experience as you did!!

Me again...WAAAAA!!! So close to the end and it all hits. Only 5 more boosts and I am miserable. I guess the Xeroform is helping.....can't really tell yet. Armpit raw. Thank goodness all these areas are not being treated anymore. The tech was right when she told me I would continue to cook for about a week after. Didnt think I was tired either, but yesterday after my treatment, I decided to lay down to rest my eyes for a few minutes. Woke up 3 and a half hours later!!!! Mouth ulcers still a problem too. Well, at least maybe some of the 20 pounds I gained during chemo may start to come off. I'm generally never a whiner, but I'm just foul this morning. But God is good and will continue to be with me through all this! Love you gals!

Thank you Cindy!! I will keep you guys posted!  Long day yesterday but I got the CT Sim scan and mold made for RADS. Should find out Fri if I am good to go on Tues.  Everyone there was very sweet!  I went and checked out the Hope Lodge again where I will be staying.  They are very helpful and I am lucky it is available for me.  Betsy would love to meet you for lunch once I am settled in!  I know having you gals here to lean on is such a big help...hugs to all...

Cherri

Hi Betsy!  No I live in Pensacola and will be moving up there for RADS and staying at the Hope Lodge during my treatment.  It is funded by the American Cancer Society so it is pretty much free!!  It is off 22nd near UAB if that helps as far as the location!! I will stay on here regularly so we can set up to meet for coffee....I need to stay busy while I'm up there or I will get in a funk!!!

Cherri

Hi ladies!  Got all settled in and my first treatment went well...aside for having my hands up for so long!  I thought I wasn't going to make it!!  I was told it would be alot better once the margins are all set up.  Tomorrow going to the store and buy some groceries and work on my Radation countdown calender!  Any tips please let me know...thanks a bunch!!

Cherri

Hi all, would like all your good vibes on Friday as I "face down" my oncologist. Had my plan in place since February, did my rads, and was ready to begin hormone therapy when out of the blue he suggests a mammo print test, and the numbers put me in the high category for reoccurance (they only do high or low). My oncotype score was 22 with a 14% chance of reoccurance. It was from the oncotype test that he recommended radiation followed by hormone therapy. He felt theree was little to gain with chemo therapy. Now 20 weeks out of my first surgery, 16 weeks out of my reincision, ( good margins each time, just needed more margin around an area of DCIS) and after rads he is saying that maybe chemo is a good idea.



I've done my own research, checked in with many of you and have decided to forego chemo and continue with his first recommendation which was rads followed by chemo, based on his own expertise with my pathology, confirmed by oncotype testing.



I don't do well when facing down authority, taking my husband with me for backbone. Just wanted to share, and ask for good thoughts. Thanks, Kris

CLYDAY....glad you're settled in and all set to start your treatment. Don't forget I'm here for you when needed...not far away at all. Headin to the beach at the end of the week but have to come back for Herceptin next week. Bummer. But I'll keep in tough with you.

Oh my.... I almost forgot...tomorrow is IT! Last zap! Yippee!!! But my treatment center doesn't have a bell so I'm countin on you all to help me ring my invisible bell tomorrow!!! I'll check in to let you know if I cried or not...I do dearly love my rad team!

Love to all,

Betsy

Oh and by the way, everything is better....left girl, mouth ulcers ( still there but better!), itchiness.....all better!

RunFree16, My pathology is very similar to your's without the lymphnode involvement - 90% hormone receptive. Everything I have read leads me to believe that the oncotype test is the "standard" in aiding treatment decisions and the mammaprint is a new comer (at least in America - has been used in Europe) Thus I would think a ton more data to support their findings. I've looked at all the graphs and charts that show minimal benefit from chemo with a score like mine (and tumor type) but that hormone therapy has a good advantage.

When he first told me his new recommendation I felt like I had a whole new cancer - I felt like I had just had my surgery and was hearing my diagnoses for the first time. This was a serious set back to my well being. (talk about you mental health being as important as your physical health) Even before the oncotype he had recommended radiation followed by hormone therapy. It took me a couple days to remind myself this is the same tumor - the one that he, with his 26 years of experience, called from the very beginning with the pathology report (he even called the oncotype results. low or low intermediate - which I was)

The mammoprint has no middle so you are either 10% or you go straight to 30% reoccurance - I understand that a doctor could then be off the hook for a judgement call - and in this world with malpractice around every corner that's probably a priority for them. But everywhere I've looked, including a chemo site at Johns Hopkins, they use the oncotype for people trying to make their decision.

I'm so far out of the optimal chemo range (study that says 12 weeks is the outer limit - and I've seen it even lower) My MO said initially my benefit from chemo would be about 2% - not worth going through the risks - I would agree and will stress that point to him on Friday- I feel like I'm being irrational about this - but I think this is so bizarre that his second diagnoses feels a bit irrational.

I know it's ultimately my decision - and seeing that others have gone before me helps. Will I make the right choice - don't know - I guess if it comes back people will say - wrong choice. But I've seen lots of people make the chemo choice and the cancer has returned (not to mention some long term side effects) - I don't think there is a ton of science to some of this - just chance - Let's face it very few people know why we got cancer in the first place - so it's likely they don't have any fast and true way to tell who will get a reoccurance.

I don't know, I just want to move forward - and hope I can live with my decision.

Kkuziel, that is just really maddening behavior in an MO.  Mine, too, did a real about-face from visit 1 to visit 2 on quite a range of issues.  I tried to point out some of the ways he was being inconsistent, but he didn't see them. I actually believe he might be slipping.  He's only maybe 60 or 62 but his statements were just off, besides being medically obsolete.  You can ask for a patient advocate, tumor board referral, or second opinion if he continues to make you feel unheard.  He'll be managing your hormonal therapy, right?  I am sure you can face him down because you are well-informed and clear about your choice, but even so it can be tough to feel firm and calm about it.  Good luck and I do hope you'll let us know how it goes.

All done! Rads over at last. I even shed a few tears, from both joy and a touch of sadness. Guess it's just an emotional time when you enter this next phase of

" treatment": trying to return to normal. If you're just starting your rads, you can do it!!!! Things are never as bad as we imagine them to be!

Love to all and good night!

Betsy

Looking forward to my celebration from radiation. Kind of got stolen from me with this new test tossed in my face. But feel good about my decision, based on oncotype test, and the first recommendation from MO. Appointment tomorrow and then I hope I will have the "moving forward" plan. Already have the appointment for first mammogram passed radiation. Going to try and enjoy a worry free five months - (well at least that's the plan) Thanks to all that have encouraged me this past few weeks - talk about a rollercoaster. Kris