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Sarcoma Diagnosis -- 6 weeks too late to wait?

Sarcoma Diagnosis -- 6 weeks too late to wait?

Posted by Poppystock on Jun 18, 2019 11:53 pm

Hi there,

I am writing on behalf of my husband who has a large mass on his lower back. He has had an ultrasound and then an MRI which were both declared/came back as 'inconclusive'. Our primary GP (of whom I'm not a huge fan, I find him flaky and arrogant) insists that the mass does not have the markings of a tumor as it has 'no flow'. He told my husband he would refer him to a General Surgeon -- but today we found out he's being sent to q Dr. at Mount Sinai whom is a (I believe very well respected) oncologist in the sarcoma field. I'm actually relieved we are seeing an expert, but the initial consultation with Dr.  is not for six weeks (!) Is this normal? Absolutely unacceptable? Should I be pushing my husband and the doctors harder to see him sooner? Should I trust that if it looked bad, they would fast track him? I honestly don't know. I expect time is everything with diagnosis and yet I don't want to jump ahead in line. Any advice most appreciated from someone just looking to be a good advocate, no matter what happens!

Best,
Poppystock

Re: Sarcoma Diagnosis -- 6 weeks too late to wait?

Posted by ACH2015 on Jun 19, 2019 5:44 am

Hi Poppystock‍ 

Unfortunately, yes this can be the normal wait time.

Options toward seeing the oncologist sooner may be contacting the oncologists office and seeking any cancellation available, or asking if another one of the specialists team members could see your husband sooner.

It is scary enough to be told you have cancer, and then made worse by having to wait weeks for a consult. The sad truth is that there are to many of us (patients) and not enough of them (specialists) available to go around at times.

Another option may be to advise your husbands GP that your appointment is 6 weeks away, and seek another specialists who's availability is shorter than six weeks. The GP has no idea your husband is six weeks away from a consult, and may be able to get an alternative oncologist appointment sooner than that.

You are right when you say time is important for diagnosis and treatment. Advocating for yourself is becoming the norm in some circumstances. Seeking quicker service as I suggested is not out of line, and I've done it myself as a cancer patient as required these past three years.


I hope these suggestions help get your husband assessed, diagnosed and treated sooner than you expect.

Keep well and keep in touch.

ACH2015 - Andy.


 

Re: Sarcoma Diagnosis -- 6 weeks too late to wait?

Posted by Boby1511 on Jul 31, 2020 1:25 am

Time is important. Jurvinski Hospital in Hamilton has a great team of doctors and sarcoma specialists. I started with the Toronto doctor (head of the department) he was horrible. Hamilton has the best care. I had multiple complications with my surgery and died twice on table. Spent 4 weeks in hospital recovering. Saw my main surgeon every weekday. Dr Jimenez is the absolute best doctor. He cares about his people and has a great team. The doctors were very on top of the care. Course I am still dying. Perhaps if I had gotten my care in December and not May I might have had a better outcome.

Re: Sarcoma Diagnosis -- 6 weeks too late to wait?

Posted by Boby1511 on Jul 31, 2020 1:36 am

Re: fast track
My tumour first appeared in December. Unconfirmed until surgery in May. It was large and had almost tripled in size. Now end of July I have another new tumour which is inoperable. I now have months left to live. I seen a Toronto Specialist in January. He did nothing dispute all my scans reporting cancer signs. Now I’m dying. I hope your husband fairs better. Sarcoma is very aggressive. Terry fox died from a type of bone sarcoma. He also had 18 months chemo and still died.