Standards of care

[Russell's Mom]

Excellent care is available for TC, but only in selective medical centers. There are many more care centers and MDs still unfamiliar with this cancer. Need I speak to the end result of time delays and missed diagnostics. The medical field is held to "Standards of Care" in many areas. I have not been able to locate any standards of care regarding this disease. Not the assessment for diagnosis or the treatment. To me, this is absurd. There are too many physicians caring for young men to not have the guidelines to create a quick and efficient care model. (This is not to say that rural areas should be treating, just following an efficient start and referral if needed.) I am writing to see if anyone is familiar or cared for by a motivated team of MDs who might be willing to create the Standard and submit it. The exact avenues are not familiar to me, but as my energy is available again, (that means my son is dancing out the other side!!) I will explore the possibilities. With Standards of Care written for all MDs to follow, even young men in rural areas would not be missed or poorly treated. This disease is in the forefront for other cancers, the "model" to which they are seeking cures. It would be nice to pave a path for care communication. Any ideas or sources of information will be appreciated. Please let me know your thoughts. Sincerely, Sharon

[Karen]

Sharon,
If you poke around the reseach library on this site you will find some great articles members find most relevant to TC. A key url, posted by Scott is the 2006 NCCN guideline http://www.nccn.org/professionals/ph...testicular.pdf

The "standards" are out there, but TC is very rare, and many docs do not know how the recognize the symptoms and diagnose.

[Russell's Mom]

yes, this is why standards are needed

Hi Karen and thanks for the reply. Yes I know about the available information, and as well the rural area concern. This was the goal of my request. It is the rural areas that need education and guidelines in order to prevent missed and delayed diagnosis. The Standards would be submitted to an organization, say maybe the AMA, then all doctors would be working with the same guidelines for adequate and efficient care. My guess is that the cure rate would rise even higher if all doctors knew the appropriate steps from day one. Thank, Sharon

[Chris'Mom]

Hi Russells Mom, when my son Chris was first diagnosed, here in our local area, the Drs. looked at us like we were from Mars....when we finally went to Sloan Kettering in NY...we felt taken care of....and not alone. Mary Ellen

[Russell's Mom]

thanks for your reply

Thank-you for validating the need. Russell is horizontal right now, half way through round 3...Bleo day, one more round to go, but I think I will stay on this on. Perhaps the new urologist can help with some direction. It is so easy to get caught up into our own needs....very legit....but I hate to think of anyone having to hear the words, yes metastatic. Take care, Sharon

[Chris'Mom]

Sharon, I will be thinking of your son...I remember well going thru the chemo with mine....stay strong....Mary Ellen

[Russell's Mom]

thanks

The encouragements are there with me when I wake up in the mornings. it goes beyond words as you know. When I start to feel really tired, I remember what I am doing, then realize I can glide or stop and still be there. It is amazing what happens in order to get through. Thank-you again, Sharon

[Pilgrim]

UK Standards

Saw your post. Re Time standards, the National Health Service in the UK has got mandatory waiting time standards for diagnosis and treatment for the different types of cancers.

Broadly they are:

* Consultation with Specialist within 2 weeks of referral by family physician
* 31 days from diagnosis to definitive treatment, and
* 62 days from referral by family physician to definitive treatment.

These may seem slow compared to the US, but were set based on the advice of leading clinicians. Thankfully, as these are the maximum, most people in the UK are treated in about half this timescale.

The best treatment guides I've seen are on the National Cancer Institute Site (The health professionals rather than public version) and the best systematic evaluation of research is at NICE (The national institiute for Clinical Excellence in the UK)

Regards

Pilgrim

[Russell's Mom]

appreciate the info

Hi Pilgrim,
Great info.!! Most of my time is around Russell right now, finishing round 3, heading into round 4 then probable RPLND. My thoughts so far are around the fact that oncology seems to have a pretty good hold of diagnosis and treatment, but the GP and lower levels of care remain uninformed. As well, the population (young men) are probably the most difficult to reach. (Many reasons!) It seems in my mind that standards need to be developed at the start of the race so to speak. The info that you sent is a good start for me. As well, a creative way to reach the young active males in the society. Although Russell went in with the tinyest of lumps, he was still missed and it seems like there is a lot of confusion for people when they first go in or wonder where to start. So far (very open to ideas) my plan is to write to the docs at UCSF or possible the sites that you sent, to see if there is an interest. It is going to be a while yet, for now, am getting a little tired and trying to conserve my energy. Take care, Sharon

[Pilgrim]

Take Care

Hope the latest round goes ok. He's lucky to have a mom like you to care for him.

Be glad to stay in touch if you want to select me as a buddy email for sometime in the future as and when you get things going.

God bless

Pilgrim.

[Russell's Mom]

you are on my list

Thank-you! I didn't realize there was a list...you are first on it. Will keep in touch! Sharon

[Russell's Mom]

a little update

Long week. day 5 of round 4. Aloxi, Anzemet, Decadron, Ativan and Compazine and we have the vomiting under control. Occasional nose bleed and some anemia....but no problem!! I spoke with our Urologist today and shared my thoughts. He was in agreement and thinks the attention would be worthwhile. We shared thoughts and I have a few ideas with what is left of my brain. Right now..... just want to keep the fire lit on this one. Keep in touch, Sharon

[Lori]

Sounds like good progress. I'm thinking of you. Lori

[Russell's Mom]

any additons welcome

We finished round four!!!! I have not found the word to describe the feeling, so far we believe that it is more than one word!!

We have the fortunate opportunity to have Russell's chart reviewed by 5 MDs with excellence in their area of expertise. This will occur toward the end of November. This review will be through the Regional Cancer Foundation in San Francisco, CA. My goal is to gather my thoughts and present my concerns in regard to the lack of coordinated care that is occuring in relationship to early detection of TC. If anyone would like to share their concerns/ideas, I will be glad to carry printed documents along with mine. I realize that many areas are functioning with efficiency and accuracy, but many are not. It is my belief that the guidelines should be stretched to include the early care provider. That education and accountabilities for early assessment need to be included within the guidelines. That efficiancy at the "start line" would improve the already positive survival rate, not to mention decreasing the burdon of treatment. Hopefully improving the standard of care for this cancer will create a standard that can be used for all cancers in the early detection stages. Please feel free to contact me at [email protected]. Please make note of TC within the greeting. Thank-you, Sharon

[Chris'Mom]

I rmemeber well the feeling of finishing Round Four for Christopher.....the relief that he had just one more step of surgery to start living his life was beyond words...I am so happy for all of you...and appreciate all you are trying to do re: standards of care....Dr.s here in my town said TC is rare, I doubt Chris has it...and then boom....take care .....Mary Ellen