Tuesday, January 3, 2012

Disappointed & Stressed!

RADIATION DELAY!!!!!!!  I was told by my chemotherapy oncologist (chemo onc) that radiation should/would begin 3 weeks after chemotherapy to give my body a chance to recover from the chemo drugs.  My last chemo was Dec. 13, so 3 weeks would have my first appointment with the radiation oncologist (rad onc) on Jan. 3 so that my treatment is timely & as effective as possible.  I emailed the chemo onc on Jan. 2 that I my appt. had not been set up by UTSW.  I received an email from the chemo onc's nurse that she would re-enter the radiation  referral.  I got a call from the rad onc's scheduler today, Jan. 3, telling me that the rad onc cannot see me until Jan. 26!  That is 6 weeks from chemotherapy & has me concerned!  The chemo onc sent me to the rad onc in September for a consultation.  I did that & signed the consent form for treatment.  NOW, the rad onc is saying that was 4 months ago & I have to have another consultation appt. first!  So why did they make me go to the one in Sept.???  They knew how long chemotherapy would take!  The reason the rad onc cannot see me for so long is because she only sees new patients on certain days & she has meetings scheduled for all those days until Jan. 26!  Geesh!

The reason I am so worried over this is that I know the sooner they can begin radiation the less chance I have of any stray cancer cell metastisizing in another part of my body.  So, call me a worry-wart, but here goes a copy of the email correspondence today between me & the referring chemo onc.  By the way, you send an email to the doctor, but the nurse reads it, speaks with the doctor, & responds.

First email I sent to remind them about the fact that I need a radiation appt. (in italics):

To Dr. Haley:  Just wondering a couple of things. Last chemo was on Dec. 13. Will Dr. Spangler contact me about beginning radiation or do I need to contact her? Do I need to contact Dr. Euhus about removing the port?

Reply from Nancy, Dr. Haley's nurse:

Hi Ms. Ellis,

I re-entered the referral request to see Dr. Spangler so her office will be contacting you. I'll check on your mediport removal when I return to the office on Wednesday. The surgeons here wait until 4 weeks after your final chemo treatment prior to removing your mediport.

Thanks!!--Nancy Sawyer, RN, OCN

At this time, I received a call from Dr. Spangler's scheduler saying she couldn't see me until Jan. 26.  So, I wrote this email to Dr. Haley:

I hate to be a worry-wart, but I was of the understanding radiation should/would start 3 weeks after chemotherapy. Dr. Spangler has a busy schedule for January with dates scheduled for meetings and cannot see me until Jan. 26, which is 6 weeks after chemotherapy. I had a consultation with her in September, but she says since it has been 4 months, I need to have another consultation appt. Jan. 26 is the first date she can see a new patient. I know that radation doesn't even start that day, because markings have to be tattooed & a simulation appt. comes first, also.

So, my question is this: Does it put my health in jeopardy not to begin radiation of any possible cancer cells until 6+ weeks after chemotherapy. Of course, I was anxious to put all this behind me, also.

I think this is the first tearful concern & fear I have had since beginning with UTSW in August.

After continuing to worry about this, I sent another email to the chemo onc:

Nancy, I just wanted to add this to my previous email. I am honestly scared about delaying the radiation. It seems like the delay is because of administrative obligations of Dr. Spangler of which she has no control, with the best treatment option for me not being the priority. I am just very stressed over the thought of stray cancer cells metastasizing before the radiation is begun. I know that Dr. Haley wanted me to begin rads 3 weeks after chemo. This will be 6-7 weeks after chemo. I don't want to cut off my nose to spite my face & ask for a referral to a different doctor if Dr. Haley thinks Dr. Spangler is the best rad onc for me. I am so stressed about this unexpected delay & I know stress is not good for me. I need to hear Dr. Haley's thoughts on this problem.

I received this reply from another one of Dr. Haley's nurses:

Ms Ellis

Nancy is out today. I forwarded your message to dr haley Dr Haley advised if you want we can send request to Dr Rahimi for radiation. Please let me know

So, now Dr. Haley is asking me if I want to change rad onc's.  This was my reply:

I am hesitant to change radiation oncologists because I feel as if Dr. Haley referred me to who she thought would be best for me. MY QUESTION IS: Does Dr. Haley think it is okay for me to delay rads until Dr. Spangler can see me?????

If it is not dangerous to wait until Jan. 26 to see Dr. Spangler, that is what my gut is telling me to do.  I really liked her when I consulted with her in Sept., & evidently Dr. Haley thought she was the best choice for me.  I looked up the other rad onc she suggested & it looks like she just got her rad degree in 2011 - not as experienced as Dr. Spangler.  My mastectomy was on my left side which is right over the heart, so I need an experienced radiologist so I don't get life-threatening complications.

So, I sent this email to Dr. Haley's nurse:

I really felt confident with Dr. Spangler when I consulted with her in September.  I would like to use her IF Dr. Haley thinks is is safe to wait until Jan. 26.  I know that Dr. Spangler is experienced & my mastectomy was on my left side which is right over my heart & I don't want to worry about life-threatening complications from  a rad onc that is not as experienced.  It is my life I am talking about, so I am diligently searching for the best solution to this unexpected delay - which might not be anything I should be concerned about - but I need the reassurance from Dr. Haley about that.

Received this reply:

Ms Ellis

Dr Haley advised its ok to wait till Jan 26.

So, I will wait.  Just didn't need or expect this extra bump in the road.  I wanted to get this all over & done with.  I will have to just pray for strength & peace over all of this.

I don't know what happened to the old positive Sharon today.  She'll be back.  Need your prayers now more than ever.