Back, again. Different cancer. Update#2 - heading to surgery 12/15 AM

[Ms. Toad]

Last edited Mon Dec 14, 2020, 10:37 PM - Edit history (3)

I had breast cancer in 2016 - so far, so good on that front!

Now I have a new cancer - myxofibrosarcoma. I've been cooking it since 2014.

It started being diagnosed as a dermatofibroma (benign - and they don't turn in to cancer). There is a small subset of this initial diagnosis that is actually precancerous and masquerading as dermatofibromas. There are 4 general characteristics that are often associated with the (rare) cancerous version - that initial tumor had 3 of the four.

I had to fight to get it biopsied. Once biopsied (with the initial pathology report showing 2/4 characteristics) I had to fight with a different doctor to get more detailed information about the remaining characteristics - and it has one of the two remaining characteristics that are troubling.

Fortunately, after those clowns I was able to get back to my regular dermatologist. She understands that I have pretty good medical intuition. It is now on its 4th recurrence (the earlier 3 times were all diagnosed as a recurring DF, with no new troubling characteristics). This time it grew from nothing to about 1.3 cm in 5 weeks. That's not good - benign things don't usually grow that fast.

So - I just got the diagnosis. I'm in for more surgery - that's probably all for now. (They have a higher than average tendency to recur and to metastasize so it may not be the end of it.) I'm waiting to hear from plastic surgery (their expertise is required because of the extent of the surgery in pretty sparse tissue - my forearm). My prognosis is probably better than average, since I caught it early (kidney-bean sized, rather than the more typical golf-ball sized - since these things are presumed to be benign)

Sucks on top of everything else in 2020.

Am I wrong to be drafting a letter in my head to the two clowns who would have doomed me, had I not been extraordinarily aggressive as a patient? (The first one flat out told me to stop googling things. I do use google to jump start my research, but my primary source for information is the same medical journals the doctor should have been reading, but apparently wasn't.) I wish they had been right - but since they aren't, I really want to rub their noses in it.

Update:

First surgery on Tuesday (assuming we can get insurance approval for a pre-surgical MRI) to take out a big chunk of my forearm, a short-term cadaver graft, then a second surgery for an auto-graft a week later. The second surgery alllows time to make sure the margins are clean and wide enough before putting the permanent graft on.

I'll lose most of the use of my right hand (even for typing) during the 2-week healing process to keep from losing the graft - but after that life should be back to normal. (There's a potential for unexpected news from the pre-surgical MRI, or the oncologist I see between the surgeries, but those are very unlikely.)

Update #2

All clear for surgery tomorrow (12/15). MRI suggests the tumor is 2-3 times the solid tumor that was removed, but no signs of lymph node involvement or distant spread.

[femmedem]

1. Wishing you all the best with your surgery, and no you are not wrong.

I think the doctors who dismissed your concerns should know that they are fallible, and that their mistake would likely have been fatal if you weren't so persistent.

There's a long history of medical professionals dismissing women's health concerns, even among professionals with no conscious bias. That letter you're composing in your head could save future lives.

[DonaldsRump]

2. I agree. Wish you all the best, and you must confront these doctors with a letter.

[Ms. Toad]

4. I've never met such an arrogant jerk as the first one.

(Aside from residents who aren't confident enough in their abilities to work well with patients who are experts in their own conditions.)

I've fired doctors before for incompetence, or refusal to work with insurance - but this was a whole new level.

This time around I had to take pot luck for the initial visit (3 weeks ago), since dermatologists are always backlogged. I was assigned to the "clinic." So I called ahead to make sure clown#1 was not assigned clinic duty. I named him, and informed the staff that I would see anyone but him - and explained why. Fortunately, one of the residents who did surgery #3 (under the care of my favorite dermatologist) was on clinic duty - and made sure I was scheduled with my favorite dermatologist for this surgery.

Aside from trusting her implicitly, I love how she works with her residents and coaches them to learn new skills. I knew this thing wasn't a lipoma (I know the texture of a lipoma, and this wasn't it). But she let the resident dictate r/o lipoma. A bit later, as she was showing the resident how to find all the tendrils of it since it was dug in pretty deep - she commented, "that's pretty firm." The resident thought for a minute and said, maybe we should rule out a dermatofobroma. Bingo. No embarassing her in front of the patient. No jumping in to correct her. Just a well-placed comment to lead her to the right conclusion. Had I not had the medical understanding I have as to this thing, I wouldn't even have noticed the subtle teaching.

[OregonBlue]

6. But don't send the letters to the doctors. Just cc them. Send them to the

Clinic Manager or in the case of a large practice, the Chief of the Medical Staff. I worked in administration of regional medical facilites for years and unless you send it to the top, it gets shuffled off.

[Ms. Toad]

7. Thanks! n/t

[femmedem]

8. What a gifted teacher.

That resident will probably never realize how skillfully he or she was taught in that moment. But the resident will be a better doctor for it.

I'm glad you're getting good care now.

[pnwest]

3. No, I'd be drafting those same letters. Wishing you best of luck with your surgery.

[Yonnie3]

5. You are your own best advocate.

It is trite, but true.

As a long term survivor of cancers (two types in my bladder), I would not be alive today if I hadn't taken control and ignored GP advice. It has been 25 years since the first dx.

There was a study quite a long time ago that showed cancer patients who where rated as difficult patients had much better outcomes. I was a difficult patient, always questioning, wanting second opinions, bringing copies of journal articles, etc.

To answer your question, no, it is not wrong to compose a letter. It would not even be wrong to send it. It might serve to shake these self assured [insert noun of your choice here] of their feelings of omnipotence and perhaps save a life.

Good luck and science!

[MLAA]

9. Good for you you Ms Toad, so glad you spoke up. Don't let anyone silence you ❤️

[Karadeniz]

10. Good thing you kept at it! Best wishes in treating it!

[Ms. Toad]

11. Bump for surgery tomorrow update n/t