APBI, Brachytherapy - anyone?

Have any of you who have APBI, or IMRT whole breast radiation have it in the prone position (face down)?  It is used for early stage breast cancer and you have to be at least a size "B" cup since the breast has to hang down.

The radiation does not come from the top - it comes from the right and left sides so your heart, lungs, ribcage and armpit are protected.  Of course they protect the other breast to make sure none of it hangs down as you lie on your stomach.

 I had 35 treatments of external whole breast radiation in the prone position for my stage 1 IDC after I had chemo and I did fine.  I don't know why the prone position is not "pushed' more by the RO - they just usually mention the supine (face up) position.

Just wanted to place this seed for those of you who have not had their simulation.

Good luck ladies!

Judy

Well I had my surgery on June 28th.  I just got my final path report and the doctor said I got all the right answers.  Stage 1, Grade 1, Margins clear, tumor size 1.1 cm. Nodes are clear.  My incisions are healing nicely but I am still sore and swollen.  The doctor want me to start the "walk the wall" exercise.  I was able to do it without a problem.  The Oncologist still wants an Onco score because of my age; but otherwise it looks like I won't need chemo and will be eligiable for the SAVI .  In two weeks I will start my radiation (SAVI method). 

My first bout with this was in Dec 2009, I had a lumpectomy and was not told about any options except whole breast radiation for 6-7 weeks. Since I research and ask questions, and was told it was Stage I I refused radiation and Avastin. In Feb of 2011, I was diagnosed with a recurrence and my surgeon said it was a good thing I hadn't had the radiation. This time I decided I would have it  but I wanted partial breast internal radiation. My surgeon and Radiation Oncologist were informed prior to surgery. They had discussions before surgery. I had a lumpectomy again. Margins clear no reason not to have what I wanted either Savi or Contura Multi-lumen Catherer. I was advised to see a Plastic Surgeon which I did for consultation. He expressed such delight in my decision to have internal radiation and his disappointment in that many women do not reseach what options are out there. Now, although I am suppose to have  2 of the best doctors in the NYC area, I had my surgery in April 2011 and have been put off by my Radiation Oncologist until June 30 before having the Contura balloon inserted. My surgeon had to refer me to another surgeon because the cavity had formed so much scar tissue he felt this other surgeon would be better and I thank him for that. The other surgeon had a difficult time but found the cavity. The RO still has not started treatment, the ballon has been in 7 days she wants confirmation that the balloon is in the right place from the radiologist who did the first CT and he is on vacation. I am not sure what to do and am depressed by all of this. I am saying all of this to tell you to stay on top of your doctors do not let them get away with putting you off for months. If you can have brachytherapy internal radiation partial breast go for it, this is the best even partial breast external is something to consider before whole breast. I hope his helps and if anyone has any info they can give me I would appreciate it.

You're understanding me right 7 days and no radiation keep being put off with excuses for not starting. I am VERY UPSET!

Blackgama,

If you are in NYC there are many medical facilities there.  Can you possibly go to another radiation facility and take your reports and have them begin your radiation.  The catheter is already in place so they just need to  get the radiation dosage figured out.

If I were you I would call around to see if another radfiation facility can begin your radiation - it seems unbelievable that there is no way for your radfiation facility to begin your radiation immediately.  In my facility there were always 2 doctors there who covered one another so there was a RO at the facility every day.

Please don't just wait - make some calls to see if another facility will tae you.

Good luck to you.

Judy

"From what my rad/onc told me, not many rad/oncs that are not affiliated with a University will even do it. It has been around about 10 years but is not the "golden standard" of therapy. He said that the side affects are the same as doing the lower doses at 33 treatments."

kshav, none of these statements are true! The REAL truth is that the ROs don't make as much money from partial breast irradiation, so they tell you stuff to discourage you from wanting it. That makes me so mad! 

blackgama,

The balloon could have shifted from being in so long. You should be kicking A_ _ and taking names.  Your RO is being irresponsible and should have referred you to someone else if her schedule could not make room for you. I can tell you that I had one lumpectomy on May 23, one on June 6th.  My catheter was inserted on June 23, the radiation started on June 27th and the catheter was taken out on July 1st. Eight days and no radiation is unacceptable!

Blackbama,

I found their website

www.thefabercenter.com

It looks like a wonderful place to be - check them out!

I live in northern NJ and know of radiation centers in my area.

Judy

Blackgama,

Good luck! 

You may find that with so much time since your lumpectomy and scar tissue you might not be a candidate for brachytherapy.  Ask about APBI or if you have to have whole breast radiation see if you can have IMRT - intensity modulated radiation therapy.  And if you have to have whole breast radiation see if you're a candidate to have it in the prone (face down) position.  I had mine that way.

Judy

Blackgama I agree with AnneWisc get to a new radiologist quickly. If you are near a cancer center I would give them a call. If not at least ask you BS for the name of someone they would recommend.

As far as seeing a lawyer take your time get well first. I'm sort of in the same position with having had a very bad Onc. At this time I'm too concerned about staying well. The energy needed to go after a Dr. for me just isn't worth it.