For Castro, was it anal?

[JackADeli]

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to discuss Farrah....

A more medically interesting, and surgically relevant story, would be Farrah Fawcett's anal cancer. Is it really anal cancer? Or is "anal cancer" being used as a catch-all by the media/lay public for rectal cancer, anal melanoma, or some other large growth where the sun don't shine?...

Eh, I think since she was fairly open about it, that if it were something like anal melanoma they would have talked about it, since its not something people really know about.

It was my understanding that she didn't have any surgery and underwent chemorad (Nigro). When she had a recurrence, she went to Germany instead of getting the APR...all of which argues for anal canal cancer. I think a good number of non-medically inclined are under the impression that Farrah was heroic and got treatment that should be standard in the USA.

Besides, the media are usually "delicate" about some of these things, so I would think they would call it colon cancer if they were trying to hide something.

I unfortunately wasted a good deal of time watching that "documentary". I left with a few points (of opinion)...

1. it seems like Farrah accepted sub-standard cancer treatment in an effort to avoid a stoma...
2. it seems like Farrah limited her doctors in the types of chemo options to preserve her hair.
3. It seemed as if hinted that Farrah was advised at original diagnosis to have more radical surgery and other therapies.

Ultimately, she died without a stoma... but lost the hair in the end. Could a more aggressive surgical/oncology approach have prevented a local recurrence? Could a more aggressive adjuvant chemo regimen have prevented the disseminated mets? One could argue that if she had not jumped through all sorts of hurdles avoiding maximal cancer treatment (or standard cancer treatments) she might have been "curable" for whatever that means in cancer. Instead, she made a choice and got the "customized" regimens she demanded.

The other issue is one of "informed consent". Throughout the program at different points she seemed to believe she "was cancer free". She also talked about this "mutant" cancer that was sending out mutant soldiers throughout her body thus pushing her to have a limited anal resection in Germany. I am concerned about the possible misinformation disseminated to the general public. It seems like the non-medical community may have the impression Farrah was heroic and that she purchased healthcare, presumably better, that should be standard of care in the USA.

 

[Zoom-Zoom]

The misinformation part is especially scary. The degree to which a cancer pt decides to sacrifice treatment in efforts to maintain quality of life is one thing and is often quite understandable...but making those decisions under false pretenses...that's tragic.

 

[Winged Scapula]

Unfortunately, in an oncologic practice, I see self-diagnosing and limitations patients put on their health care providers much too often.

Some of it is misinformation - gleaned during their "medical school" training on line with Google and Wiki or from family and friends who do not have the ability to accurately process data.

Some of it is long-ingrained beliefs about the medical community and our greed and desire to keep the cancer CURE a secret (they KNOW we have) to prevent us from saving everyone and losing our jobs and sources of income for which we buy our Porsches and mansions.

Some of it is unwillingness to hear the truth as it is filtered by fear, misinformation and denial. I did not watch the documentary but every colorectal surgeon I've spoken to is fairly sure that Farrah would have been offered very aggressive treatment and that when she recurred or failed to show a significant response to the Nigro, that she probably refused the APR.

Stomas are scary things and most of us have seen patients who would early rather die than have one. Funny thing is I have two relatives that have ileos (from UC resections) who aren't interested in having the IPAA. Now they're older and probably not the best candidates, but clearly these things are preferable to dying, even for an aging sex symbol. But either she didn't want to hear what they had to say, couldn't handle the idea of losing her youth and beauty AND having a stoma or got some bad advice from someone/somewhere.

I guess I fail to understand these choices. HAIR GROWS BACK and there are a thousand lovely Farrah wigs on the market. People will still love you bald...I know its devastating to patients, especially women and ones with gorgeous hair. Hell, I have pretty nice hair and I'd be upset but not to the point where I'd limit treatment choices.

Hope can be a tragic thing for someone dying. They will grasp onto whomever is telling them what they want to hear, "Oh you can cure my metastatic cancer with a homeopathic salve (a real patient of mine)? Sounds great! I'll cancel my surgery." "Oh you can cure me and I won't have to lose my hair, have my anus sewn shut and wear a bag of poop on my belly for the rest of my life? Sounds great! I'll go for that!"

She was by all reports a lovely, lovely woman - kind and generous and breathtakingly gorgeous. Its really a shame...it might have ended this way anyway, but if it were me, I'd want to know I did everything to try and prevent it. I'm sure she thought she was.🙁

 

[Winged Scapula]

Tell me more JAD - what was the discussion about surgery in Germany? What do you think she had done?

At that point she was already metastatic so I'm not sure how the limited resection was supposed to help. Was it simply to relieve a bulky obstructing tumor? Perhaps she simply had it cored out?

 

[ESU_MD]

it's funny, because my first thoughts: i bet she was too vain to have an APR.
A ostomy isnt that bad- granted I dont have one, but if I had a choice between some IPAA, I would pick an ostomy any day. its better to have an ostomy on your belly vs an ostomy attached to your anus.

anal cancer is pretty responsive to Nigro, but if you recur- its APR. I didnt hear about this limited resection in Germany, but I pretty sure that TEMS (transanal endoscopic microsurgery) was invented and is the main mecca for this type of technique.

TEMS is good for doing supeficial mucosal resections for maybe a t1 cancer, but even T1 cancer has a very high recurrence rate, maybe unacceptable in a younger healthy pt.

typical celebrity nonsense. she makes a mockery of our system and the media glamorized her and makes it look like US medicine "failed her"

 

[JackADeli]

Tell me more JAD - what was the discussion about surgery in Germany? What do you think she had done?

At that point she was already metastatic so I'm not sure how the limited resection was supposed to help. Was it simply to relieve a bulky obstructing tumor? Perhaps she simply had it cored out?

So, what I gathered from watching is this:
1. unfortunately, her faith was shattered because of significant breach of confidentiality at I think it was UCLA.
2. She was enrolled in some trials, etc... at City of Hope.
3. Early on, she reports how the "primary" treated with chemo/xrt had not returned but she had mets in her liver. Shortly there after it seemed like the anal primary did return. Treatment (per her account) would require "radical" resection "in the USA" because of the damage from chemo/xrt.
4. She heard of this German "clinic". She started to make flights there. In Germany, she underwent interventional rads (sounds like chemo embolization) to her liver in combo with some sort of percutaneous ablation techniques.... I think she said something about pain as catheters passed through/near her ribs.
5. she under went anal surgery, which sounded much like, as noted, TEMS (transanal endoscopic microsurgery)
6. she talked about how the chemo regimen was specifically designed based on her tumor.... I suspect the Germans use "precision" or "oncotech" type tumor assays.....
7. Her oncologist referred to her as a "miracle" and talked about being able to cure her.
8. it never seemed like she received a vascular access port at anytime. This made for recurrent lack of peripheral access IV drama. It also allowed further demonstration of German superiority as they were able to obtain very difficult peripheral access. (it is not lost on me that a lack of central access in and of itself may have also limited the types of chemo).

After all of this, there was a point when she danced in the German snow and then went to dinner with her German oncologist to celebrate her cure.... after she a) had a anal recurrence & b) had a half dozen tumor mets (liver) ablated.... It was all for nothing as she wasn't cured. At the end, she was at City of Hope with an oncologist starting the "strong" chemo that would finally take her hair....

All in all, it didn't sounded like she got things that ARE available in the USA. But, it sounds like what she got was a hodge podge of therapies far too late in the treatment cycle and out of effective sequence. It seemed to me like rushing to a mastectomy, after breast conservation lumpectomy, when liver mets?!?

JAD

 

[JackADeli]

....At that point she was already metastatic so I'm not sure how the limited resection was supposed to help...

Oh, yeh....
So, the way Farrah talked about the anal primary was something like this (I will paraphrase):

it was important to remove it if she was to be cured... it was this evil tumor that was showering her body with mutant tumor cells. by removing this evil source, the German treatments would then have a chance of erradicating the mets....The German doctors felt this would be a crucial component in her success.

As I write these replies, it brings me back to the points of informed consent and misinformation. I almost had a stroke while watching the program. I also felt so depressed as she was either in such denial, confusion, or deceived... But ultimately, clueless.... My significant other, no formal medical training whatsoever, saw the first five minutes. She looked at me and asked, why in God's name would anyone continue like this... she is obviously going to die. Doesn't that German doctor need to tell her she is going to die?

 

[Smurfette]

As a side comment, we do several TEMs weekly at my program. They are for low rectal cancers that can be cured with local resection (i.e. T1 disease; lesions that normally could be completely excised transanally but are too high to do without using a camera to visualize---like a really big diameter rigid procto). It is not for anal cancer (NIGRO), and certainly not for metastatic disease.

Truthfully, Farrah hung in there longer than expected given how bad her disease seemed to be towards the end. Kind of like Patrick Swayze and his Stage 4 pancreatic cancer--isn't he almost 2 years post diagnosis?

 

[njbmd]

Unfortunately, in an oncologic practice, I see self-diagnosing and limitations patients put on their health care providers much too often.

Some of it is misinformation - gleaned during their "medical school" training on line with Google and Wiki or from family and friends who do not have the ability to accurately process data.

Some of it is long-ingrained beliefs about the medical community and our greed and desire to keep the cancer CURE a secret (they KNOW we have) to prevent us from saving everyone and losing our jobs and sources of income for which we buy our Porsches and mansions.

Some of it is unwillingness to hear the truth as it is filtered by fear, misinformation and denial. I did not watch the documentary but every colorectal surgeon I've spoken to is fairly sure that Farrah would have been offered very aggressive treatment and that when she recurred or failed to show a significant response to the Nigro, that she probably refused the APR.

Stomas are scary things and most of us have seen patients who would early rather die than have one. Funny thing is I have two relatives that have ileos (from UC resections) who aren't interested in having the IPAA. Now they're older and probably not the best candidates, but clearly these things are preferable to dying, even for an aging sex symbol. But either she didn't want to hear what they had to say, couldn't handle the idea of losing her youth and beauty AND having a stoma or got some bad advice from someone/somewhere.

I guess I fail to understand these choices. HAIR GROWS BACK and there are a thousand lovely Farrah wigs on the market. People will still love you bald...I know its devastating to patients, especially women and ones with gorgeous hair. Hell, I have pretty nice hair and I'd be upset but not to the point where I'd limit treatment choices.

Hope can be a tragic thing for someone dying. They will grasp onto whomever is telling them what they want to hear, "Oh you can cure my metastatic cancer with a homeopathic salve (a real patient of mine)? Sounds great! I'll cancel my surgery." "Oh you can cure me and I won't have to lose my hair, have my anus sewn shut and wear a bag of poop on my belly for the rest of my life? Sounds great! I'll go for that!"

She was by all reports a lovely, lovely woman - kind and generous and breathtakingly gorgeous. Its really a shame...it might have ended this way anyway, but if it were me, I'd want to know I did everything to try and prevent it. I'm sure she thought she was.🙁

My goodness, this is the one of the most eloquent statements I have ever read. Many thanks WS. I can say that one of the most frustrating things for most physicians is that often in the direst of circumstances, patients will hear and not hear many things that the physician has stated.

As a resident, I watched a 49-year-old woman with a small breast tumor refuse biopsy and all conventional medical therapy for naturopathic therapy because she didn't want to lose her hair with chemo. Fast-forward three months and she had a necrotic breast wound and neuro deficits from the mets. She was dead three weeks after that still refusing any conventional therapy. The result may have been the same with lumpectomy, radiation and chemo but I believe under the best of circumstances, she would have been able to see her grandchild born 8 months later instead of dying with a full head of hair.

It's my belief that patients don't hear much after the words "cancer", "malignancy", "amputation" and many others. "I want to die with both my feet" begs a diabetic with necrotic toes who is wheelchair-bound who with a good BKA and prosthesis would be on their way to recovery and ambulation in most cases.

 

[droliver]

As a side comment, we do several TEMs weekly at my program. They are for low rectal cancers that can be cured with local resection (i.e. T1 disease; lesions that normally could be completely excised transanally but are too high to do without using a camera to visualize---like a really big diameter rigid procto). It is not for anal cancer (NIGRO), and certainly not for metastatic disease.

I'm a little out of the colo-rectal business these days, but I thought after initial enthusiasm, that the whole business of some of these transanal excisions had fallen into disfavor for higher recurrence rates?

 

[sponch]

"Oh you can cure me and I won't have to lose my hair, have my anus sewn shut and wear a bag of poop on my belly for the rest of my life? Sounds great! I'll go for that!"

Technically, the anus resected not sewn shut. 😀

 

[sponch]

I'm a little out of the colo-rectal business these days, but I thought after initial enthusiasm, that the whole business of some of these transanal excisions had fallen into disfavor for higher recurrence rates?

We still do them out here... but I think you're thinking about rectal cancer... anal cancer is a different animal.

 

[JackADeli]

I'm a little out of the colo-rectal business these days, but I thought after initial enthusiasm, that the whole business of some of these transanal excisions had fallen into disfavor for higher recurrence rates?

There have been some papers published in the last 5 years showing these limited resections work with... like all else... very careful patient selection.

It's been a little while... and thankfully, I don't have to think about it anymore. But, during my oral/certifying exam, I was given a question along these lines. I told them I would do the trans-anal resection. They had me explain it.... We completed that procedure, patient got some adjuvant and came back with local recurrence... proceeded to total meso-resection..... patient did OK, I was grateful no "stoma complications"..... Patient back with multiple liver mets....

I suspect I would not be board certified now if I suggested this patient go to Germany for endovasc embolization combined with percutaneous ablation and trans-abdominal nodal stripping...😱

 

[Winged Scapula]

Technically, the anus resected not sewn shut. 😀

Thanks for the information.🙄

The quote was meant to be said in a patient's voice, as that is how they perceive it (since all they can see are the external sutures with no anus apparent).

 

[Castro Viejo]

Technically, the anus resected not sewn shut. 😀

You obviously weren't in the OR with me that one time during my R4 year...

 

[droliver]

I suspect I would not be board certified now if I suggested this patient go to Germany for endovasc embolization combined with percutaneous ablation and trans-abdominal nodal stripping...😱

That's definately not the "safe answer" 🙂

BTW. Just looked up some of the literature (here)on the transanal rectal tumor stuff I was thinking of. Seems consistant with what I remember, ie. unacceptable recurrence rates except for older patients who may not be fit for an APR or low,low anterior resections.

 

[JackADeli]

That's definately not the "safe answer" 🙂

BTW. Just looked up some of the literature (here)on the transanal rectal tumor stuff I was thinking of. Seems consistant with what I remember, ie. unacceptable recurrence rates except for older patients who may not be fit for an APR or low,low anterior resections.

Yeh, somewhat along the lines of what I recall.... clearly require very careful patient selection.

....Despite a similar risk profile in the 2 surgical groups, patients with T1 rectal cancer treated by local excision were observed to have a 3- to 5-fold higher risk of tumor recurrence compared with patients treated by radical surgery. Local excision should be reserved for low-risk cancers in patients who will accept an increased risk of tumor recurrence, prolonged surveillance, and possible need for aggressive salvage surgery. Radical resection is the more definitive surgical treatment of T1 rectal cancers..

Definitely (local/limited resection) not a surgical treatment (for cure/salvage) in recurrence with widely metastatic disease..... It just seemed like her cancer treatment was sequentially backwards in modality choices and preferentially chosen for sub-optimal care......

I think my board question that started with me doing a transanal resection for T1 was steered that way by a "patient" that did not want major resection.... We discussed recurrence risk, etc.... proceeded to limited resection and down the path of ...recurrence with ultimately aggressive salvage surgery. I think this may be a board favorite. It involves "breaking bad news", ethical dilemma of providing a "inferior" therapy based on patient priorities/choices/"internet medical school training", and "informed consent". A patient that "doesn't want a bag" is a challenging board scenario.