JUNE 2011 RADS

Vickilf: I sent you a PM from my nutritionist

suebak I'm on the same schedule as you.  Today is 13 for me but I think I'm getting 33 treatments, 25 regular and 8 boosts.  I may ask about taking the day off tomorrow too.  My appointment is at 2:20 each day and we are going out of town with a 3 hour drive that will take 4-5 because we will hit Olympia/Tacoma/Seattle at rush hour and I'd love to leave earlier.  I tried to change my appointment and they didn't have any earlier openings.  I may ask if it's OK to skip.

For those asking about creams.  My RO office told me to start using them on day one.  A friend who is a survivor told me to start using them before treatment started. I've been using Aloe, Udderly Smooth and Calendula Cream, alternating between them throughout the day.  I usually put Aloe on after my shower when I have time to let it dry before getting dressed and the others 3-4 times during the day.  I have some olive coloring from my Mom but I tend to burn and peel in the sun without strong sunblock if that makes a difference.  So far, so good with my skin.

I am having the Canadian protocol.  16 treatments (stronger than if I had 35) and no boost.  The RO said I qualified for a study they are conducting for 10 treatments given over 5 days, but my section was filled.  I am a little sick to the tummy, getting more tired, but otherwise; got through this first week.  I hate going.

I had my consultation yesterday, with mapping, simulation, and tattoos. It did not go well and I have been second-guessing ever since. tdsmgb I think we must have the same rad doc! OMG, it was horrible. I should not have gone forward past the consult, but I got paralyzed even with DH along (a very practical/logical sort of guy-total opposite of me-and he was not impressed either!)

First thing RO said was "You're young (50), you're triple negative. That's bad. Real bad." Didn't hear much else he said as I pretty much cried through the rest of the consult. He did say, "You're probably cured already, but we want to be sure." Treatment suggested seems to be standard of care, but was surprised about his recommendation to extend the field to the clavicle area, as I am stage 1, 0/3 nodes, excellent clear margins. BUT...grade 3 and triple negative. This idea of extending the field to include the clavicle area has not been mentioned before and I am concerned about adding it and thereby increasing the SE's (although he says it does not increase the risk of lymphodema). He is the only RO within 50 miles. Question to the group: are any of you early stage, no node involvement, triple negative AND getting clavicle area radiated in addition to breast? We are all so unique, I know it is hard to compare. I've asked the same of the TN thread as well. It is done for those with node positives, but not often with node negative, even if TN. I found one research paper (very recent) that would support this however.

After crying all through the appointment and all the way home (husband was in separate car because it had been at the mechanic's) and having a long talk and restless night, I finally called the nurse navigator.  She apologized and said she had talked to her manager before about his doomsday approach and lack of tact. She even suggested a second opinion and said it would not be a problem to delay the start of rads in order to meet with someone. It means going either 50 or 70 miles away, but if I get confirmation that his suggested treatment is appropriate (which I think it is, except not sure on the clavicle thing yet), it may help me decide if I can suck it it up and deal with him for the one time a week we'd see each other or that it IS worth the extra hour's drive to have someone I can trust and be comfortable with. Husband supports me 100%. It is so rare for him to have such strong feelings about a doctor; he is a dentist and is much more logical and be much more objective. He's never felt the need to "like" his doctor as long as they get the job done and know what they are doing! With his own patients he tries to make sure they understand exactly what he is going to do and why, especially when it is something involved and complicated. That is when they need to trust you the most!

So, for now, I am feeling so much better about getting a second opinion. 

P.S...Beetlebum! I can totally relate to having feelings hurt, rather than getting angry. That's me! I must say, I did like the techs so if I do go back at least I know they won't beat me up!

P.S. S. Cancer sucks, doesn't it?!

Husker - yes you see the RO once a week but in my case I see him more than that,,,,that said, find someone with a better attitude than that or you will be depressed through the whole treatment and that is not good for the healing process. I am 19/28 now WooHoo - but I have an awesome group working with me...

Beetlebum: I would talk to the nurse/RO NOT the tech for what you need.. My nurse or the nurse practioner gives me my creams and I can get all I want.. My techs kinda do there job and keep out of the dispensing the creams and such.. I think I'm spoiled though -everyone is nice to me..

Bettlebum: I finished 10 today too.  I've been pink since day 3 or 4, but my doc says I look good.  The "you ain't seen nothing yet" scares me. I'm just going to keep on lubricating and hope for the best!  I've been feeling full of energy, but today I am tired.  I drive 2 hrs each way to my hospital.  I stayed over 2 nights this week, but I think it has caught up with me today.

 Husker:  I am a different stage and I did have nodes but I do get the supraclavical.  I don't think the side effects are that much more.  My RO told me that it does increase your chance for lymphdema, but the highest risk is for women that had a lot of nodes removed ( I had 9 removed and that is not considered a lot) and overweight women.  She said a study just came out that it does decrease the chance of recurrence, but I think it is mostly indicated for invasive cancer that has spread to nodes.  You might want to check that. 

It's a deal bettlebum, I'll be thinking of you.  Are you post menopause, thus the Arimidex?  I am supposed to go on Tomoxifen, but my oncologist said I shouldn't start until after radiation.  I am sensitive too and sometimes I think doctors just don't understand all that we go thru.  They each only see one little piece of it and I really don't even tell them everything that I feel.

June Ladies..................I finished Rads on June 14th.............I'm not going to say, or minimize Rads, but I had a wonderful RO, a fantastic team of Techs, and a great facility.................I began to turn pink around the 2nd week of Rads.........36 total.......8 of those were boosts..................I barely had to use anything................I gradually got a little redder, but nothing I could not handle...................I felt great throughout the whole procedure until after I was done........................then all I got was a little fatigue, but it didn't stop me from going to BJ's, Kohl's, and Bed, Bath, and Beyond with my daughter in the same day....................and I did this through Thursday and Friday Rads too..........................Don't be discouraged............of course there are the "horror" stories out there, but I wanted to give you some encouragement by telling you "I sailed through this".....................I'm 76, blonde hair, blue eyes, and fair skinned, although I always got a great "tan" during the summer.

Don't let this get you down, just try to remember as you lay on the table..............this is a treatment........it is not a lifestyle........I'll be done one day.............good luck, and hugs.

Hello everyone,

 I'm new to post.  Just got my mold and tatto done on Tuesday and went in today for trial run.  As soon as I got in my mold I was so uncomfortable and my arms started going numb pretty quickly in that position. Something about that position that my arm is in that I think the circulation is not good and puts my arm to sleep.  I feel it's too uncomfortable to bear for 15min for 35 treatments.  When I told the technitians this, they told me that I would have to get a new mold made and possibly whole new set of tatoos done and it would delay my treatment further.  They kept telling me that it was going to be ok but I just feel like it's not ok and want to find a more comfortable position.  Am I over-reacting or should I ask to make a new mold?  I'm just afraid that staying in the uncomfortable position will end up causing some kind of injury later.  Also, add to the feeling of not wanting to go in for treatment since it will feel like torture staying in a position when I feel so uncomfortable.  What do you ladies think about this?  Need some help!!!  

 I suppose to start my first radiation treatment on Monday.  Should I call cancel and request for a new mold to be made?

 hoboken, I am 19/36 and I had to have my form remade. It only delayed my treatments for a day. The actual time in the machine is very short! I find myself gritting my teeth and I have to make myself relax so I try to remember the words to random songs. It makes the time pass faster. You're not over reacting and you have a right to be comfortable. During these hard times, go with your gut even if people in the clinics disagree. You're going through this, they're not. If you have to, talk to your RO. It's their job to make you comfortable!!!!  The first week is the most harrowing and then it gets to be routine. I'm sending you hugs and positive vibes.(((HUGS)))

Hobokenmom:  Your treatments will not last 15 minutes.  Why don't you give it a try on Monday and if it's not going to work, then get a new mold.  Good luck with your treatments.

Thank you ladies for your encouraging words.  I guess I'll try it and see how it goes.  It sounds like I can request a new mold at a later time if I really can't stand it.

If it's any help to anyone else...I count the seconds it takes to do each "beam"..I have 5 rad " beams" and it helps me get through the discomfort of having my arms above my head. It seems to take about 5 minutes to get me in the proper position and then only a few minutes of actual radiation. I also know that after the last beam I have to wait about 30 to 40 seconds for the techs to come back in the room and tell me I can put my arms down. *L* That's the part I look forward too.

hobokenmom:

I'm starting rads on Monday too. I'll be thinking of you and saying a prayer for you. I'm telling myself that it has to be a lot better than when I had the MRI done last month...that was staying in the same position for almost an hour.

I'm a bit nervous about it all too. Hopefully, things will go well for all of us!

Where do u get avocado cream