Has anyone been offered new 3 week radiation trial?

danismom

I had to take the traditional rads.  My insurance would not pay for the IMRT.  I wish I coul have taken it instead because the radiation has burned me so bad.  It is taking about 4 weeks longer than expected to finish 33 treatments due to the burns.  But, I only have 10 more now and I'm ready to get through with them.  I did find that 2 1/2 weeks off rads and I'm not as tired as I was, so I guess once I'm through I'll feel much better.  I HOPE!

johnwayne

Sharon - thank you for your post

johnwayne

I don't know how close this is, but what about MD Anderson - even if just for info.  And however the US Onc rep is sounds like a nut.  Go the the New York Times website, nytimes.com, or it's probably somewhere on the breastcancer.org site)and read the 9/23/08 articile about 3 week RT.  Do bare in mind 3 week is NOT the proven standard of care in the US yet - but something that is being studied.  The most important thing is to get as much info as possible, take your time making a decision and then do the best for the patient.  Much good luck.

johnwayne

Only one other thought NewMex.  Shorter radiation might or might not be best for your girlfriend.  SHE should read all of the date, talk to the docs - better never whacky US Onc Doc again (ha) - and make up her mind.  Best to you both.

johnwayne

I just wanted to say I'm so sorry about your burns and I'm happy you are almost finished.  This whole insurance issue is a mess that I hope more and more breast cancer survivors are going to become the force needed to make some radical changes is what insurance carriers have to cover for b.c. treatment.  Be well.

traveler56

Mzmiller -- Susan

I am going to Albany Med too!   I really like the medical team there and am excited about the gold as well!   I am a little worried about the fatique as I drive 34 miles one way to work, will get the rads, work, then 34 miles back home and don't want to fall asleep on the way home.   I told my husband tonight he needs to prepare now for walking the crazy dog and making lunches.  

I will be in the NOvember group here as I don't start till after Halloween (good time to glow)

QueenK

I cannot copy and paste, but the 3 week rads is NOT only for people with DCIS.I think there is a lot of misinformation so here goes.My rads onc was one of the Drs that participated in the research in canada...

3 weeks, we do not have the "laying on the tummy position" at my center or anywhere in ontario.it is a more intense targeted program and it is proven to be better for the skin and for side effects.It can be used in many stages and not just stage 0 or DCIS.It is a proven method and standard of care here...

Thanks!

bluedasher

3 week rads is included int the NCCN guidelines as is 5 week. Doesn't that make it "standard of care"?

The Canada research excluded those with large breasts so that may be a factor in the choice. There are some other studies under way that don't have that exclusion, but I haven't seen any results from it. The Canada research didn't show 3-weeks to be better than 5-weeks for skin and long term effects. It came out to be the same (i.e. no statistically significant difference).

mzmiller99

traveler56,

That is too cool!  I live near Lake George, so it was a ghastly long trip, but doable!

My surgeon is Dr. Pietrocola, my rad onco is Dr, Gibons.  Love them both!

Keep in touch.

Susan

QueenK

There is a HUGE difference if woman are not getting radiation due to location or issues with time...I mean if there is no difference in outcomes..then why not go for the three week instead of 6 weeks? There are a lot of woman out there who do not get what they need because of the time it takes.

I am not sure which study you are talking about, my doctor did do a study on wman with larger breasts and the 3 weeks trial and the outcomes where the same, the ONLY difference was maybe some more skin irritation.

It just really annoys me when US Drs, say things like "Unproven socialist health care methods" 3 week rads is a proven method.

bluedasher

Jennywren,

Timothy Whelan, M.D of Juravinski Cancer Centre at McMaster University in Hamilton, Ontario, Canada was the lead author on the study that I saw which excluded women with large breasts. 

Has your doctor's study published results? If 3-week is as effective and has the same long-term cosmetic results, I would really prefer to do it. My doctor sounded open minded but he wants to check it out first which is reasonable.

QueenK

I can ask him on friday! The reason I was worried was that I have size Double D breasts, I have seen Dr.Whelen and am very familiar with his study, as well as most canadian studies.I myself am a researcher and work in health care.

I do know that they said there is an ongoing trial (I am not involved in this one!) for the shortened radiation for larger breasts.I will see what I can find out from my man and see if he can be of some help.

If you need concrete facts, esp about larger breasts then it may be too early to tell, I do know that my rads onc who works with the Jurvanski center did assure me that the course was the right one, and rarely in my case did they do longer radiation.I had 1.7 MM of IDC ONLY..so maybe that is why?

traveler56

Mzmiller - susan - I have Dr. P in Albany too and Dr. Gibbons -- and I feel the same; they are great!  I work about 1 mile from Albany Med so hoping it will work well for me to get it done in the am and go to work.  I work for health dept so we have a nurses station with a cot if I get really tired during the day.  Had to go there once when I had a bad toothache and took too many hydrocodone (I took 2 in 8 hours, but since I am 5 ft tall about 108 it almost knocked me out -- I threw up all day) so they let me lay down for an hour. 

I love Lake George - I travel to Warren Co for business now and then and my hubby and I have also gone up a couple times.   I just got back from Lake Placid, love that too, and before rads I will make one last fall trip all the way to Canton.  

I definitely don't have large breasts - 34A and i think the one that had the lumpectomy may be an "almost A" now but I am interested to see this whole positioning thing.  My area seems to be right smack in the middle in the back of the nipple.  

saltair

hi everyone!

 i just finished with the accelerated 5 day partial breast radiation with dr. weiss (the founder of this website).  i had two treatments twice a day for 5 days.  i originally had heard about it on the john hopkins website.  had planned to go there but dr. weiss offers it in her practice.  the first surgeon/oncologist i went to really pushed the mammosite alternative and didn't tell me of any other options.  why is it we have to do our own research on so much of this?  i mean aren't we already dealing with enough to then take the time to figure out that there are so many other options that doctors don't even tell you about?

 from what i found about mammosite many doctors are doing it but there have been alot of reports of balloon failure and dr. weiss told me you can have some "hotspots" that are more difficult to manage. 

 the 5 day partial breast has about 5 years of data, they have all the participants they need in the clinical trial but the national cancer institute felt there was enough positive data they gave it the okay to be a treatment.

 i found the hopkins website, and dr. susan love's website as well as this website to be the most helpful.  and i believe i met a woman at the first surgeon's office that had just come back from MSK and they were not doing mammosite because they didn't feel it was proven.

hope this helps!

jea1013

Saltair,

I read your post with great interest!  I'm wondering if you have an article you can point to about the five year data they have on the accelerated partial breast one week version of radiation.  I had four doctors tell me they thought it was going to be just as effective as the mammosite in its ourcome statistics, but I never found an article showing what data they do have. I'd love to know about what statistics Dr. Weiss gave you.  Thanks!

Dr. Weiss was recommended to me but I never ended up going there because I found a rad onc even closer to my home who would do the one week partial breast accelerated radiation.  The first rad onc I went to was really pushing the mammosite also, but the research I did showed it had enough side effects that I didn't want to go there, since I have a hard time taking high doses of antibiotics. 

 So I too had to do my own research to find alternatives.   I agree with you, why do they make us go through this ourselves?  Why can't they just tell us all the options?  I spent hours on the computer when I was still really worn out from the surgery, trying to find alternatives and make these decisions. 

I was very pleased with the one week external beam radiation--I had very few side effects, mostly just some fatigue which is now fading away four weeks after I finished (and that was made much worse by getting a nasty stomach virus--I don't think it would have been bad at all without that virus.) I'm so glad women are now being given this alternative.  How were your SEs?

ICanDoThis

saltair and jea1013 -

I also had the one-week accelerated partial breast irradiation, and am also very interested in the stats. I started on a Monday, and by Thursday evening, I had fatigue, and basically spent the weekend in bed, but I never got much of a burn, and was all in all, very pleased with this treatment.

I did it after they had to pull my mammosite catheter because of an infection, followed by a course of antibiotics.

I really liked this course of treatment - I'm just concerned that because it's not sexy and doesn't have a lot of advertising behind it, that it isn't being offered to enough people.

mzmiller99

LOL!!  Big ta-tas were never my problem either!  Now, it's one small and one "mini-me"!

I have an appointment with Dr. Gibbons on Oct. 29.  I hope I get to see my techs then.  They saw me at my worst, and I'd like them to see me a bit more normal!

I had no intention of going to AMC - too far away.  But, Dr. P made the appointment for me with Dr. Gibbons and then, went on vacatio!!  As did Dr. Gibbons!!  My appointment was Tue. - she returned on Mon.  It was too late to cancel or be referred to Glens Falls, so I kept my appointment with Dr. Gibbons, but I was all teary and upset, and told here I wasn't staying with her.

I got a phone call at 8:30 the next morning - no idea who it was..."Hi, I was in the shower and I was thinking about you!  Must be when the hot water hits my head, I get smarter.."! 

 It was Dr. Gibbons!!!  OMG!!  When was the last time a doctor you barely knew calls you from their house to say they were thinking about you in the shower!?!?  I told her on the phone that I was all hers, no matter how far I had to travel!  I've had no regrets.

And, my oncologist in Saratoga speaks very highly of her. 

 Some time we'll have to compare notes.  Did you have your surgery at AMC or the South Campus?

 Wishing you the best. 

Susan

traveler56

Susan - mzmiller - I had my surgery at the South Campus -- people there couldn't be nicer, everything went well, except I made my husband turn green when he saw the wire sticking out of my boob.   i had to laugh, he does not have a good stomach for things medical  but he hangs right by my side through everything.   Both Dr P and Dr G have called me directly at home -- one day Dr. P called me three times and I almost freaked out as I could not get back to her till the morning -- it was about the reexcision.  But when does a surgeon leave you 3 messages?   

I go tomorrow to get my steri strips off.   Then friday for gold and thurs the 30th for the simulation.  Can't wait to get this all started and done.   I worked a second job this weekend as a caterer helper and made $150 -- half the radiation co-pays so that is good.  I think these insurances should be ashamed of themselves making people pay a daily co-pay for radiation treatment and chemo.   I am in an HMO - there is only one plan I know that does n't have associated co-pays with cancer treatment, and I did not join it!!!

mzmiller99

good for you! I keep thinking that those gold beads are the most expensive gold I'll ever own!  i got the bill from AMC for my first surgery (had a re-excision, too) and they charged for the gown, the blanket to keep warm, a vomit pan that I didn;t use, every piece of gauze...I wa stunned!!  No wonder it cost $8,000+! 

 And,I hear you about the daily co-pay.  Mine was $20.  I whipped out my credit card to pay the first week, and  found out it was cash or check only!  I didn't work this summer because of the cancer and by the end of August, I was broke!  First summer of my life, since I was 12, that I didn't work, but I thought my rads would start in July, not Aug. and i didn't want the hassle of everything all at once.  I could hardly wait to get that first paycheck after school started!

Good luck with the gold and sim.  I had Liam, Justin, and Tara.  They were great!

Susan

mzmiller99

good for you! I keep thinking that those gold beads are the most expensive gold I'll ever own!  i got the bill from AMC for my first surgery (had a re-excision, too) and they charged for the gown, the blanket to keep warm, a vomit pan that I didn;t use, every piece of gauze...I wa stunned!!  No wonder it cost $8,000+! 

 And,I hear you about the daily co-pay.  Mine was $20.  I whipped out my credit card to pay the first week, and  found out it was cash or check only!  I didn't work this summer because of the cancer and by the end of August, I was broke!  First summer of my life, since I was 12, that I didn't work, but I thought my rads would start in July, not Aug. and I didn't want the hassle of everything all at once.  I could hardly wait to get that first paycheck after school started!

Good luck with the gold and sim.  I had Liam, Justin, and Tara.  They were great!

Susan

mzmiller99

OOPS!  Things are running so slowly that I hit submit twice!!  Sorry!!

traveler56

I just got my bill from the lumpectomy.  Everything paid but the $75 co-pay but also close to $8000.   unbelieveable!  Pregnancy test cost $85 -- it was a urine test -- don't the drug store ones cost about $10?     and if I were pregnant (2 months away from 52) I would admit myself to the nearest loony bin!

optimistic727

I asked my doc about the three week one and his reply was that it had been tried in Canada and has been discredited.  After checking on my own I feel he is either poorly informed or a liar.  Doesn't make me feel very secure

johnwayne

Optimistic,

 Your doctor is both, I'm afraid.  If you want to read on the "canadian trial" google the Whelan Trial.  Results are now 10 years plus out.  You can also read an excellent article about 3 week treatment in the New York Times, dated 9/23/08.  Only you, of course, know the best for yourself - but don't hesitate to get a different physician if it's want you want.  It's also always fun to print the study results out for them and hand it to them in person.........................

God Bless.

optimistic727

Hi johnwayne,

I had already seen the Times article and after your recommendation  read the Whelan report and since I'm "busty"  figure I'm not a candidate for the three week method. 

I'm waiting, I can't say calmly, for my follow up with the surgeon on the third.  Yesterday I had a phone call fron the radiation doc's office to set up an appointment there.  When I called I asked what it was for and they said follow up from the surgery.  Since at this point I have no information concerning the lymph nodes involvement I'm wondering if the Rad doc has heard and already making plans for radiation which would be great.  But good grief do I wish comunication was better.  As for the lumpectomy I can truthfully say it's been no problem.  Absolutely no discomfort.  Never needed a pain killer.

Brenda

koshka1

Hi ladies...

I am in Vancouver Canada.. and I did 16 rads treatments and 4 boosts...I believe each treatment given was a higher dose/shorter protocol.

My rads onc explained to me that they did a bunch of tests in Canada and found it more effective.

Anyway,,,no major issues except for the square tan and some tiredness.

Hugs...Kosh

boobytrapped

Hey all,

I'm currently doing the 3 week protocol too at a teaching hospital here in Ariz and I think rad dept here is fairly familiar with this tx.  I had my OTV yesterday after 7th tx, and rad onc is saying its up to me to decide whether to do 16 tx w/o boosts, or to add 4-6 boosts.  How do I decide this??? Makes me nervous as he doesn't seem to know what the "standard" is for this protocol, i.e. boosts or no boosts.  Anyone have recommendations or knowledge about this ?

dldclub

I am recently diagnosed, DCIS, plan on using Hopkins for surgery & treatment, DCIS is located right behind the nipple.  I asked my surgeon about Mammosite, and she said it is not offered at Hopkins.  I live over an hour drive from Hopkins, and will need to find a source for radiation a little closer to home, how do I find a local radiologist that will do a 3 week radiation?   Why do I have to learn about cancer and treatment options on the internet, why aren't the breast centers doing a better job with giving us all of this information.   Without this site, I certainly had no idea there was a possibility of a 3 week trial. 

peeps1111

Hi:

If you are not going to a teaching hospital, you probably won't find the 3-week alternative.  Since the study was done in Canada, it seems to be that the U.S. drs. want to do their own studies and it won't be happening at community hospitals for a while. 

I was willing to drive over an hr to RI. to get  the 3-week protocol so I could get it over with, rather than doing the 6-1/2 week course 10 mins. away at the local hospital but they wouldn't take me because of a positive node.  I have since decided to go back to Boston.  I'm thinking that this is my one shot at kicking this and if I have to drive an hr. to get it done right, then I will do it.  It is all so frustrating.

Peeps 

mzmiller99

peeps1111 - I did a three week treatment, too, but it was a 3 and 1/2 hour round trip...on a good day!  It was worth it, but I really felt the fatigue from the driving.  A couple of times, I took a nap...while I was driving!!  Thank goodness for caffeine!

Susan