Aaaaand!! Here I am in the Quicksand... help?

So.

I got a phone call today from the sweet assistant at the Surrey Cancer Clinic who advised me that  Dr Dermatologist (I am replacing actual MD names for the type of MD they are so as not to confuse) won't be seeing me until a lymph node biopsy and a wider excision is done on my face.

I phoned the Advocate at our Health Authority that works as liaison for the Insurance company to see if she could do anything.  Often they can slip you in a little quicker if appointments need to be made. She suggested seeing my own GP to see what she can do (which I have already done) so that was that.

I did phone the surgeon's office where my original surgery was booked, only this time Dr Plastic Surgeon#3 is back from vacation.   The office gals patiently listened to my whole story and then suggested I email Dr Plastics#3 himself with  the info.

Gladly, I said.  I needed to let him know what was walking into his office next week.

Here is my letter: 

Hello

It was suggested to me by your staff to send you an email and give you the heads up on an appointment I have with you on September 4th.  My apologies in advance for such a long email!

Dr Plastic Surgeon#1  did a wide excision of the Invasive Malignant Melanoma on my Left Cheek on July 25th in your place while you were gone.  Initially he indicated that I would probably have to have a lymph node bx done post surgery.

Post operatively, I was referred to  Dr General Surgeon for the lymph node biopsy and also a referral was sent to Dr Dermatologist for follow up.  After my second post op visit with Dr Plastic Surgeon#1,   I called Dr General Surgeon's office to discover he was on vacation until the following week, so I called at that time (August 13)  to see when my appointment would be and left a message. 


 By the end of that day  Dr General Surgeon's office phoned and told me that they had let your office know before they left for vacation on Aug 1st  that they had sent back the referral to your office and would not be seeing me because I would need further excision done on my face since what was done already was "insufficient". (Dr GenSurg actually came on the phone at that time)

I texted Dr Plastic Surgeon#1 what Dr GenSurg had said about the "insufficient margins", and Dr Plastics#1 texted me back to confirm that yes, the margins were sufficient and in the office visit he stated that I probably wouldn't require a lymph node biopsy after all.

Dr Plastics#1 tried to make connection with Dr GenSurg's office and also Dr Plastic Surgeon#2's office but he stated that due to his unfamiliarity of the system in this area and no familiar connections with the MDs in the area, he was having difficulty getting through. He also told me that I was "falling through the cracks" as a result, but told me that he was sure I would be my own advocate!

 I did phone the Abby Cancer clinic and also the Surrey Cancer clinic and found that my file was "on hold" until further testing was completed.  I called my GP for an appointment the next day and saw her on August 19th  and she made a referral to Dr Plastics#2's office.

I saw Dr Plastics#2 who kindly fit me in on August 21st and was told by him during my appointment  that the margins were indeed sufficient and furthermore, I would not require a sentinel lymph node bx or any adjuvant therapy.   He explained it is difficult to find the sentinal nodes and also there could be potential damage done to nearby structures and nerves from "digging around". He then said that they would refer me to Dr Dermatologist for follow up.

Dr Plastics#2's office did put in the referral to Dr Dermatologist but it was sent to the White Rock office instead of the Cancer Clinic and when I called Dr Derm's office, they stated that they returned the referral to Dr Plastics#2's office, as Dr Derm doesn't see Melanoma patients in his office - only at the Cancer Clinic.  I called the Surrey cancer clinic who stated that she will talk to Dr Dermatologist about my case when he was at the cancer clinic there on Friday (today).

I then called the Cancer Clinic in Abbotsford and apparently my file there is "on hold" but Dr Oncologist  had made a notation that I do need further excision and a lymph node biopsy done.   I requested that this information be sent to all the surgeons/MDs involved in my case but because I am not an "official" patient at that clinic at this time, they cannot do that.

 

Same with Dr Derm:  when I requested the assistant to send this information that I need further excision and a SLNB to the surgeons/MDs involved in my case, they declined because I am not an "official" patient until the wider excision and sentinel lymph node biopsy is done and I am *actually* seen by him as a patient.  They weren't hopeful of a connection with Dr Plastic Surgeon#3 due to the busyness of Dr Derm's practice.

So you can see I am in limbo here.  Neither the Oncologist nor the Dermatologist  will see me until further excision and the SLNB is done - yet so far I have had both Dr Plastics#1 and Dr Plastics#2 tell me that the margins are sufficient - and there are no further referrals to anyone that will do the surgery. 

I will be seeing you on September 4th.   I know everyone is busy with appointments and actual patients that they are seeing (I am an RN and have worked in the system for 37 years and know how this is!) but if it is possible to find some way to have an agreement between Dr Dermatologist and Dr Oncologist and yourself as to whether or not the margins are sufficient  - I would really appreciate it.

You can understand my frustrations in this ( I have left out a lot of other phonecalls and discussions I have had with the Cancer Clinic in Abby and Surrey - apparently referrals and information are mistakingly being sent to one or the other so no one has the full picture - told to me by Dr Derm's assistant at the Cancer Clinic- due to my involvement at both centers since I live in X town and Abby doesn't deal with Melanomas and Surrey is the center for that)

All I would like is a resolution to the question of what is "sufficient margin" and participation in the decision.   I realize this is my face and there is the problem of my lower lid becoming involved but in my head "total melanoma removal to prevent reoccurance" trumps everything.


Also, re: the SLNB:   From what I gather with the Final trial report of sentinel-node biopsy vs nodal observation in melanoma (N Engl J Med 2014 Feb 13) there is benefit to having a SLNB done, and I would like participation in that decision also.

I appreciate you seeing me on September 4th and look forward to our meeting.

Regards,

R(etired)N

To which he replied, quite promptly, I might add:

"I shall see you on the fourth and assist in advocating on your behalf to be seen by the cancer clinic. "


*sigh*

I have my fingers crossed and I am hoping that I really am not my only advocate in this abysmal system that is quickly sucking me under.

And just like these jokes, it's so terrible - it's actually funny: