STILL WAITING

I’m really really sorry to hear about your diagnosis. I really am. My husband was diagnosed with desmoplastic melanoma in his parotid gland (main salivary gland) on June 19th (my 54th birthday). Despite being very near to the Cancer hospital here in Dublin (Ireland) AND having private insurance, it took us a few weeks to realize that you have to be your own advocate. The surgeons, nurses, radiologists, receptionists, secretaries, health insurance workers, etc. are all human with their own lives and problems, and sometimes they are just too busy, tired, fed up, underpaid, etc. to prioritize your situation. We were so scared every day that the tumour was growing while we were waiting to be contacted for an appointment for the WLE, SNB and CLND (complete lymph node dissection). After realizing mistakes were being made in terms of the hospital contacting the wrong insurance company, we took the risk of calling them more periodically to ask them for some type of timeframe while making sure to apologize for any inconvenience each time (because you get so scared that you may get on their bad side.) After going through quite a number of people, we finally found a wonderful nurse who helped us immensely. My husband’s operation was on July 23rd. We are now waiting for his radiotherapy and immunotherapy to begin. Unfortunately, this means dealing with a completely new set of people, and like before, we are finding out that we have to push (in a polite manner) to get things moving. It’s 2 months today since his operation, and once again we find ourselves scared (not everyday as when he was first diagnosed) that some micro tumour cell that may have been left behind in his body is now growing again to form a new tumor. We are having trouble with our insurance company authorizing the therapies, but our oncologist has now become involved in dealing with our insurance company. This has made a world of difference to my husband: the fact that someone else is also fighting for you. Do seek support; from friends, family, and from this forum. Celeste’s (Bubbles) website has helped me enormously in strengthening me with knowledge about melanoma. The sharing of her own melanoma treatment as well as the sharing from so many others does make you stronger and better informed to deal with the many people you will have to be dealing with. So do not give up; follow up with the surgeon, and keep in mind that everyday that you are made to wait, that’s another day closer to new and better medicines and therapies to combat melanoma.

Sending you many positive thoughts.
Affected

At the time, their weren’t a lot of treatments but the nodes were good. I cleared two years of cat scans, switched to lung xrays.

I’m stage IV, picked up as the result of a brain MRI for an unrelated condition. The brain met is new, within 6 months Be Ayse I have had many MRIs now.

If I had had a brain MRI when I had the melanoma removed they would have found my unrelated original brain tumor. If I’d had a chest CT they would have found my melanoma. Bah. Anyways, doing immunotherapy now.

Keep on the doctor.

I’ve kind of lost my niceness a bit as I totally can’t stand getting stuck in an illogical workflow, so I tend to go “Terms of Endearment” on behalf of my loved ones at this point. I did it with the scheduler at MD Anderson who didn’t seem to have a sense of urgency when I called them after seeing my husband’s pathology report which was looking pretty bad prognostically. You’ve got enough on your plate, don’t feel bad about pushing for your own needs.

These people are human and good for sure and I try not to yell at the gatekeepers, but there is nothing wrong with pointing out serious flaws in these large systematic and often ridiculous medical hoops we have to jump through. And sometimes you are just dealing with the one bad apple in the workflow. I figure I’m doing it for the next guy that may get stuck in a bad workflow when dealing with a life threatening condition and if they have a chance to do better next time, maybe that helps. i’m sure they have their own opinions about me at this point 🙂

Good luck, the anxiety and stress at the point in the process you are at is overwhelming. Just for some hope, my husband had a 2.2 cm (22 mm deep) melanoma removed from his back and his nodes and scans came back clear. We have followed the wait and watch protocol because the treatment he was offered at that time was IL-2 which meant hospitalization, etc.

Many hugs and this board will help you a great deal. Wishing you a successful SNB/WLE and that all is clear.
Jackie