My melanoma nightmare update. Better news.

[fightforfreedom]

Just got back from seeing my second surgeon. She told me what has happened to me is very unusually. First, is was unusual the pet scan was denied. Second, she told me that there was no reason not to go ahead with surgery. For some reason the surgery did not happen. My first surgeon is going to remove the melanoma from my upper cheek. My second surgeon is removing one lymph node from my neck to be tested.

My second surgeon is taking control of the situation. My first surgeon, who requested the pet scan dropped the ball somehow. I asked my doctor today if she has worked with my 1st surgeon. She said yes and he is an outstanding surgeon. However, he gets a F grade for communication, organization. Maybe he has bad staff.

The doctor I talked to today is now going to schedule my surgery. Lets hope so. She knew I had been through hell, she described me to another doctor as being, fit to be tied. That is a understatement.

I feel better, a little more calm. This doctor cared and I believe she is going to straighten things out.

She also told me the new treatments for melanoma are game changers.

[lagomorph777]

1. It's so important to find the right doctor!

Best wishes!

[fightforfreedom]

2. It really is, the wrong doctor can get you killed.

Sometimes we don't get to pick our doctors, it's scary.

[calimary]

21. No kidding!

[Hortensis]

3. So glad to hear! Control reestablished, and on to the next steps.

[Hekate]

4. Thank gods

[multigraincracker]

6. Doctors are just like plumbers....

There are good ones and bad ones.

[fightforfreedom]

8. You know what else I learned?

Outstanding doctors can have bad staff. Doctors need good staff to function properly. Just like a good president needs good staff.

Like I said before, I have good health coverage, this has never happened before and for some reason things went off the rails.

I will probably never know why my pet scan was denied. It is very unusually. Now I am told I don't need it for the surgery. CRAZY!

[Trust_Reality]

15. Agreed.

I'm not a doctor, but have been studying cancer (wife pancreatic, me prostate). I have also had a small spot of melanoma.
I would say checking lympth node(s) sounds wise. If cancer shows there, the PET may be back in play.
Melanoma is potentially systemic, but probably not if caught early.

Try to keep calm, logical, and be scientific. My wife has an aunt turning 100 next month. She has had cancer 4 times, not the same types. A neighbor lady has had cancer 4 times, always the same type.

EAT HEALTHY! Minimize sources of glucose.

Fun riddle: How many practicing doctors graduated in the top one-third of their class?

[KPN]

18. Hmmmm ... let me guess, all of them? Wait, no, a third of them?

[Totally Tunsie]

7. Nice to hear of this positive development.

It sounds like faith, luck, and good common sense have turned in your favor. On to the next stages and, then, healing. Best wishes...

[fightforfreedom]

9. You forgot anger, determination, and not taking no for an answer.

Man, was I angry. I did a good job of controlling my anger when I seen the doctor today. It was really hard. She caught onto my anger right away. I thanked her for that when I left her office. She knew I had been screwed over.

[lark]

10. What treatments are there that work?

My friend had a melanoma 15-20 years ago and there were zero good options at the time. Interferon was being trialed but almost impossible to get into those and there were no other things even on the horizon.

I went to the dr. after my friends ordeal, and lo and behold, I had a level zero melanoma and another mole with melanoma changes. I've had 3 pre-melanomas since and my daughter has had 5 pre-melanomas so this is important information for us! Guess I should look it up, but very curious what you are being told that is hopeful when I thought we were just basically screwed.

Thanks!!!

[fightforfreedom]

12. Immunotherapy treatments.

Game changer.

[lark]

36. Thanks, I will look this up and share with my daughter.

There's a better than even chance one of us will need it.

[ancianita]

11. Good news! Keep the pressure on. Best of luck in your treatment.

[fightforfreedom]

13. Thank you.

I Thank everyone here at DU. You help me remain sane. This is the only website I post on.

[NJCher]

14. yay!

She also told me the new treatments for melanoma are game changers.

[KPN]

16. Awesome news. Keep us updated. Also,

as a former melanoma patient myself (Stage 2b), I am very interested in knowing more about new treatments and what about them is game-changing. Please share when you have or learn more.

You’ve been your own best advocate and all over this situation so I feel safe in saying be positive, you got this man!

[TNNurse]

17. YES! Hallelujah, you can move forward.

I have worked with good doctors who did not know how badly their staff handled things. But once you let them know, they should take care of it.

[AngryOldDem]

19. That has to be a relief.

You have to be your own best advocate, it seems, on top of everything else.

Continued best wishes.

[DFW]

20. Melanoma is a time bomb. Defuse it in time, and your chances are excellent

Let it go for too long, and it can be your demise. My mom in law had it thirty years ago. Her first doctor said, eh, we'll watch it. The second one said, no, we won't. It gets cut out ASAP. It was, and she's fine. She'll be 95 this September.

It would be just dandy if we were to hear a similar report from you a month or two out!

[SheltieLover]

22. Awesome!!!

Ty for sharing & good luck with surgeries!

[secondwind]

23. There's nothing better than being in good hands!

[cilla4progress]

24. Best wishes for continued good news, F4F

and keep us posted!

[Sucha NastyWoman]

25. Reminds me that I haven't seen a dermatologist in a few years

Think I will make an appointment.

[FakeNoose]

26. There's reason to be hopeful

Good luck my friend! Keep on with the 2nd doctor, she sounds great.

[gaskinite]

27. I thought this was going to about Putin's hooker

That Married tRump

[PlanetBev]

28. God, I've been worried about you, Freedom

You don’t need the extra stress of being jacked around with by doctors and bad staff. Let us know the second you get a surgery date nailed down.

The doctor is right. They’ve made incredible strides in treating melanoma in the last several years.

[shrike3]

29. I thought it extremely odd they wouldn't okay the PET

Given I've known cancer survivors who've gotten it as a matter of course.

Sounds like you are finally talking to the right doctor. During our various adventures with the medical industrial complex, I learned it was imperative to do so.

Here's an anecdote: I'm on FB with a fellow diagnosed with Stage Four melanoma. He was offered immunotherapy. His insurance denied it. Experimental, they said. The university hospital where he was a patient ended up treating him for free. It was grueling. I won't sugar coat it. But he's alive and well. Cancer-free. He can't do everything he used to do. But he can do enough. Enough to make life worthwhile. This includes playing his guitar.

[Ms. Toad]

30. Fantastic news!

As I noted in your last thread - having a doctor willing to fight with the insurance company on your behalf if critical to getting good care.

You may be right about bad staff. I went to a local hospital for my breast cancer care, and fired them because their staff was so bad. The doctors candidly told me that they don't have any control over their staff (they are employed by the hospital). They did really stupid things like schedule me for back-to-back X-ray and MRI, and tell me that I could just run up and down the stairs. Unfortunatley they scheduled the MRI in an office 30+ miles away from the X-ray - and didn't bother to to tell me. It was only when the MRI folks called for my pre-visit check-in that I lerned where they had scheduled it, and that in fact I could not just run up and down stairs. Just one of many mis-adventures that cost me either time or money.

This is the same local hospital which fired all their ER workers with virtually notice to bring in an independent company to provide ER care, and which regularly gets into pissing contests with the largest insurance companies around and threatens to remove the local hospital from the approved provider list.

(And my doctor wonders why I drive 50 miles for any significant care . . . )

My brother had a melanoma removed in 2014 - at his insistence (his doctor thought it was nothing). He hasn't had any problems since. I hope you have a similar outcome.

[moonscape]

31. I might have said this in another

thread of yours, if so forgive the repeat.

I know nothing about melanoma except a good friend had a very aggressive form and was told there was nothing else they could do except get him into a clinical trial. He got in, nearly quit because he felt miserable but hung in there. Found out last month he had gotten the real deal not placebo, and he has no signs of melanoma now! Whatever it was, was just approved by FDA.

[Irish_Dem]

33. This sounds like a deal changer drug for sure.

[shrike3]

34. This also happened to an acquaintance.

University hospital treated him for free. It was grueling, but his scans are clear.

[Irish_Dem]

32. You didn't give up, you kept fighting and looked for another doc.

Good for you.

I have been through a similar situation: life threatening situation with docs who have screwed up royally.

I kept going and finally found The Fixer doc like you did.

He totally took care of the many problems and saved me....

You can now get a good night's sleep because it appears you are in good hands.

[Sogo]

35. Hoping for best outcomes for you....

Good luck!!

[NNadir]

37. Recently the FDA approved the checkpoint inhibitor Opdivo...

...combined with a new drug relatlimib for melanoma.

The prognosis for melanoma is thus better than at any time in history.

Checkpoint inhibitors help your immune system recognize and destroy cancer cells. It's a fabulous technology.

[fightforfreedom]

38. Thank you for your post.

The next big step for me is the removal of one lymph node from my neck. Having it tested to see if the melanoma spread to it. If that comes back clean, that would be really good news. If it tests positive it is a relief to know there are new treatments that have become game changers.

Yesterday, the doctor explained how Melanoma spreads down your face to your lymph nodes. You learn something new everyday. There are channels that run down your face to the lymph nodes.

I have now talked to 3 doctors, one more to go. All 3 of the doctors I have talked to have said, your case is very unusually. No family history. The melanoma did not show itself, it was found by chance. The doctor asked me yesterday, has your hair always been brown? Was your hair blonde when you were young? I said it was always brown. It's got some gray in it now.

The small cyst I had removed from the same area, not related to the melanoma. It was tested and showed nothing. I can tell from how all the doctors are reacting, this is a unique case. This was a melanoma sneak attack and I am going to kick the shit out of it.

[NNadir]

39. I am not even close to being a doctor but I have seen...

...family members through cancer, most recently my sister-in-law, now more than 5 years in complete remission.

Based on her experience usually after surgical resection chemotherapy is recommended. Hers of course was with breast cancer drugs, but similar chemotherapy targeting melanoma specifically was not previously available.

I've had two close personal friends diagnosed with melanoma. One is almost 20 years into remission. Regrettably we lost the other friend, but was 20 years ago.

Best of luck to you!!!!

[fightforfreedom]

40. Thanks.

It all comes down to how quickly the cancer is discovered. If you are hit with a cancer that does not show itself until it's too late, there is not much you can do about that. Pancreatic cancer is like that. You don't know until it's too late

One thing I have learned these past few weeks is this. I am not going to die tomorrow, next week, next month. Even if I get really bad news, I could still have some good years left. Now I need the doctors to move their asses.