Feel like I''m caught between a rock and a hard place

[wendysig]

I have a rather unique problem that I have hesitated to bring this up as most doctors have brushed aside without hearing the whole story.  When I was in my early 30s, my then doctor told me that because of my medical history (really too much to go into here, but someone I know  asked me if I feel like I'm glowing), he felt I had been overexposed to radiation and to "avoid being x-rayed" which I have also always taken to mean being exposed to radiation in any form. This doctor has long since retired and I did not have my medical records sent on to my new doctor (let that be a lesson to the rest of you),  While the only radiation I've been exposed to has been diagnostic x-rays, it has been way beyond what anyone I know has experienced.  The only doctor I've seen lately who comes close to understanding my dilema was shocked (even though he didn't say so, I saw the look on his face).  He still doesn't think this would preclude me from having a stereotactic procedure because of the pinpoint targeting, but ddin't seem 100% sure.  I am seeing a radiation oncologist on Thursday and hope he can clear this up for me, but I'm not sure if even that will reassure me.  The thought of allowing myself to be exposed to more radiation is scary because my mother died of acute myelogenous leukemia.  She had worked  in a TB sanitarium in the early 1940s and the doctor at Sloan Kettering felt this may have been a factor in her getting leukenia.  I've been told she was probably exposed to more radiation than I have, but there it  is.  The idea still scares the heart  out of me.  That has been my biggest obstacle in making a decision about treatment.  Neither microsurgery nor stereotactic radiosurgery hold any appeal for me.  However, my ENT has said watch and wait are not for me.  So have the two surgeons I've seen.  I don't think I could deal with the stress of it anyway.  Has  anyone else been told this, and what did they do?  Because of this situation I am strongly considering microsurgery even though my AN is small, 1.3centimeters.  I'd welcome any advice  from someone who has had to make a similar choice.

Wendy

[Palace]

Hello Wendysig,


I responded privately and I hope I helped you.  My exposure to rads is astronomical.  (dental field and twenty-one surgeries)  I'm still pleased with my CK team at Stanford and the steriotactic radiation was so precise.

Decisions sometimes are the most difficult part of the whole AN journey.

We are all here for you to help with separate suggestions.



My best to you,



Palace

[sgerrard]

Hi Wendy,

I would suggest you post this question (or a briefer version, giving some idea of how much x-ray you have had), on the cyberknife patient support forum:
http://www.cyberknifesupport.org/forum/

Several doctors monitor the forum daily, and provide expert opinions (they are radiation oncologists). They can give you an informed answer on whether CK (or GK) is still advisable. I think that typically, since the radiation is so focused on the tumor, exposure of other parts of the body is not a very significant factor.

Steve

[ppearl214]

Hey Wendy,

As Steve noted, I would also double check with the drs on the CK Patient Support board as I know you have already been inquiring to them about your journey.

Now, we do know that CT Scans and such give off radiation and there is a life time limit of just how much a person's body could have over time.  We do know that certain radio-treatments for AN's (such as GK/CK) have minimal affects of having anything turn into malignancies.... heck, my chances of getting cancer from other issues in the environment could be higher risk than the CK I endured.  I also understand what it is (as I'm sure many here do) to have a close family member pass away from issues, unrelated to our AN's, but nonetheless, still has a long lasting affect on us and our decision making process.  I also ran into the same thing during the process as many here know, my sister passed away from a brain tumor... so, like you, I wanted to choose what was best for me.... but keeping in mind past history of medical procedures and how they affected those in our lives.

You will know in your gut what works best for you, so regardless of what you decide, know that we are cheering you on. I'm also on the CK Patient Support board and will follow along to see what the drs there say, should you decide to further inquire.

You do what is best for you and your situation..... I have faith in you to do what will be best for you.

Phyl

[leapyrtwins]

Wendy -

although I don't have your medical history, I want to say that you are not unique in being on the fence about choosing a treatment.  It's a very hard decision.

As the others have said, you need to choose the best treatment for you based on your research and your personal medical history.  I think asking the question on the CK Board is an excellent idea, plus obviously ask the radiation oncologist you are seeing later this week.

I did not have CK, I had the choice of radiation or surgery and chose surgery - for lots of reasons - and it proved to be the best choice for me.  Although the choice is yours, I want to assure you that surgery can be a good choice and there are good outcomes.   Patients with ANs smaller than yours have chosen surgery.   If you would like to know more about my surgerical experience, please feel free to PM me.

Remember either choice you make we are here for you,

Jan

[Jim Scott]

Hi, Wendy:

You have every reason to be anxious about the delimma facing you.  For patients without your medical history, i.e. prior high exposure to radiation, the surgery/radiation question can be vexing.  Obviously, for you it is more so.  I can understand your angst and I would feel the same way in your shoes.  Of course, as patients, albeit with practical experience and some insight into AN-related issues, we cannot offer any credible medical advice, but we can offer support for whatever decision you make on this serious issue.  I note that Steve, Jan , Phyl and Palace have already done so.  I'll now add my name to that list. 

It is a very good idea to speak to a radiation oncologist for advice, both in person and online, as a doctor specializing in radiation treatment will have the kind of expertise you really need.  However, if your gut tells you not to go with radiation, then by all  means, obey that first instinct.  If you ignore it and go ahead with radiation when you harbor deep fears about it's possible negative effects, this will make it far more difficult and your healing could be impacted, too.  That is not a positive situation.

Because surgery is the only other viable option if you reject radiation, then perhaps the surgery, hospitalization and any attending issues will seem less of a trauma for you.  One hopes.    Although surgery does pose some risks (infection, CSF leaks, facial or other nerve-related problems post-op) many AN patients do not have any real post-op complications (Jim grins sheepishly as he raises his hand).  Again, doctor's advice and your own good judgment should - and will, I'm sure - guide your decision.

The bottom line for your friends here is that we wish you great success with whatever approach you chose to take, Wendy.  Please let us know what you decide.

Jim