TiffanyThinks #2

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I think her medical team is doing the right stuff she’s just not conveying it or it’s going through some denial washing machine before it gets to us. She’s saying they wanted to wait but if she is stage three I don’t know if I believe that. If she’s stage four, then I might believe her when she says they want to wait, but she’s not saying it’s stage four. I’m going from what I know about colorectal cancer as someone in remission, what the surgeon said about her surgery, and the implications of chemo/radiation not reducing the tumor.

In terms of her scans, we know the tumor is still there so “clear” probably means it hasn’t spread although the tumor remains unchanged. It has to come out or will metastasize and become inoperable again. Even without metastasizing, her tumor is already so invasive that waiting at all doesn’t fly with a stage three status. She also mentioned mucin, which means she could have a
MAC, and it doesn’t show well on PET scans. There’s so much that’s being left out but we DO know she didn’t have the T4B tumor removed, so it is practically a ticking time bomb.

If I had to guess, I would say the surgeon and the team were originally going to try surgery to give Tiffany a good chance of curative treatment but it’s possible they now believe it won’t have the intended effect, and she’ll become stage four either way. I think what surprised him is the mucin in the biopsies and if it’s MAC, it’s a completely different beast than what he was prepared for. it would also explain why she didn’t respond to chemotherapy and radiotherapy very well.

If he truly wants to wait I would suspect it’s something related to this, but if he didn’t want to wait and she’s just saying he did, then she might’ve passed her only opportunity for surgery. Her surgeon is incredible so I don’t think he would suggest waiting if urgent surgery would save her life. Sadly, I think it’s about quality not quantity, and that’s reflected in Tiffany repeating those words as well as the mental health referrals.
Why not offer some treatment outside of surgery like more chemo?
Sorry to keep asking you questions but you have knowledge of this particular cancer.
 
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Why not offer some treatment outside of surgery like more chemo?
Sorry to keep asking you questions but you have knowledge of this particular cancer.
Maybe they know it won’t help her case anymore. Surgery is a must to remove the cancer. I think they are just not giving her the worst news, so she can still enjoy as much quality time as she can. It is getting scary. 😱
 
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Maybe they know it won’t help her case anymore. Surgery is a must to remove the cancer. I think they are just not giving her the worst news, so she can still enjoy as much quality time as she can. It is getting scary. 😱
It's weird though according to stats there is a good five year survival rate for stage 3, which is localized advanced colorectal cancer. I would think surgery should be encouraged by the doctor not a wait and watch 🤷‍♀️
 
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It's weird though according to stats there is a good five year survival rate for stage 3, which is localized advanced colorectal cancer. I would think surgery should be encouraged by the doctor not a wait and watch 🤷‍♀️
It is very puzzling. Anyway I have learned a lot from these chats. I feel bad now for having been so critical of her, when we don’t even know how much time she has, without any form of treatment. 🫣
 
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It's weird though according to stats there is a good five year survival rate for stage 3, which is localized advanced colorectal cancer. I would think surgery should be encouraged by the doctor not a wait and watch 🤷‍♀️
Which is exactly why I don’t believe it’s stage three anymore. They were originally hoping the chemo would shrink the tumor and it didn’t, and the radio therapy was ineffective as well. It stopped it from spreading but it didn’t reduce the tumor as they hoped. That plus the mucin makes me think she could have MAC, but I don’t know what her doctors are thinking because we only hear it from Tiffany.

I know a lot of people are assuming they’re writing her off or not giving her adequate care, but until there is some evidence of that, I‘m inclined to side with them over her. The Royal Marsden and her surgeon are top notch, so I imagine there’s a reason for everything they are or aren’t doing. I don’t know why they aren’t doing maintenance chemo, but if they were actually prepping for surgery, that could explain it. Though Tiffany is talking like she has no intention of doing surgery.

I really hope she knows there’s only one way this will end without it. I think she’s out of her mind a bit and not emotionally mature enough to grasp the gravity of her situation, so someone needs to try to get through to her if there’s still time. Like a mental health professional. It’s easy to trick yourself into thinking you’re better because you feel better, but if you know cancer, you know this isn’t how it works. Feeling well can spiral into hell in such a short time.
 
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Which is exactly why I don’t believe it’s stage three anymore. They were originally hoping the chemo would shrink the tumor and it didn’t, and the radio therapy was ineffective as well. It stopped it from spreading but it didn’t reduce the tumor as they hoped. That plus the mucin makes me think she could have MAC, but I don’t know what her doctors are thinking because we only hear it from Tiffany.

I know a lot of people are assuming they’re writing her off or not giving her adequate care, but until there is some evidence of that, I‘m inclined to side with them over her. The Royal Marsden and her surgeon are top notch, so I imagine there’s a reason for everything they are or aren’t doing. I don’t know why they aren’t doing maintenance chemo, but if they were actually prepping for surgery, that could explain it. Though Tiffany is talking like she has no intention of doing surgery.

I really hope she knows there’s only one way this will end without it. I think she’s out of her mind a bit and not emotionally mature enough to grasp the gravity of her situation, so someone needs to try to get through to her if there’s still time. Like a mental health professional. It’s easy to trick yourself into thinking you’re better because you feel better, but if you know cancer, you know this isn’t how it works. Feeling well can spiral into hell in such a short time.
Very well said..
 
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Which is exactly why I don’t believe it’s stage three anymore. They were originally hoping the chemo would shrink the tumor and it didn’t, and the radio therapy was ineffective as well. It stopped it from spreading but it didn’t reduce the tumor as they hoped. That plus the mucin makes me think she could have MAC, but I don’t know what her doctors are thinking because we only hear it from Tiffany.

I know a lot of people are assuming they’re writing her off or not giving her adequate care, but until there is some evidence of that, I‘m inclined to side with them over her. The Royal Marsden and her surgeon are top notch, so I imagine there’s a reason for everything they are or aren’t doing. I don’t know why they aren’t doing maintenance chemo, but if they were actually prepping for surgery, that could explain it. Though Tiffany is talking like she has no intention of doing surgery.

I really hope she knows there’s only one way this will end without it. I think she’s out of her mind a bit and not emotionally mature enough to grasp the gravity of her situation, so someone needs to try to get through to her if there’s still time. Like a mental health professional. It’s easy to trick yourself into thinking you’re better because you feel better, but if you know cancer, you know this isn’t how it works. Feeling well can spiral into hell in such a short time.
that's the thing though, if you watch the video after her first consultation with the surgeon she was elated he could do the surgery and was hell bent on having it. I do not trust her interpretation of the doctor appointments but something he said made her decide she didn't need surgery asap.
She's not knowledgeable of deferred surgery and wait and watch to come up with that on her own. Clearly her surgeon did suggest this to her, and Matt was there and said the surgeon indeed did say his opinion is to wait. wouldn't stage 4 mean it spread to distant places like lungs or liver? She said that it didn't. idk very confused.
 
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that's the thing though, if you watch the video after her first consultation with the surgeon she was elated he could do the surgery and was hell bent on having it. I do not trust her interpretation of the doctor appointments but something he said made her decide she didn't need surgery asap.
She's not knowledgeable of deferred surgery and wait and watch to come up with that on her own. Clearly her surgeon did suggest this to her, and Matt was there and said the surgeon indeed did say his opinion is to wait. idk very confused.
I don’t think she wrapped her mind around what the surgery would mean because it was more of an idea than reality. It was something to look forward to back then, to keep her moving. It’s possible she balked when the opportunity arose and asked about delaying. If this happened, she’d get the terminology from her doctor, but I can see her inquiring about ways to delay, despite refusal to educate herself on her cancer.

If this is how it played out, the surgeon would have to lay out the options and explain what deferral means for her. He allegedly said it could be inoperable in six weeks.

If he really said this, I am extremely skeptical of the claim that he wants to wait. As an alternative example: she could’ve said she wants to wait despite his urgency, and he’d have no choice but to respect that. Because she’s looking for any reason to avoid it, she could see that reluctant agreeability as confirmation that it’s the “better” choice. Even if it’s not. People hear what they wanna hear, and so much can get lost in translation. More than one scenario can occur where the patient’s consent is murky.

Bottom line: if the surgeon really wants to wait, then something changed for the worse from her other appointment. It’s not urgent to save her life. It’s not good news. The best case scenario is that she’ll still be operable in a couple weeks and will choose to have the surgery even though she’s saying she won’t. Or she’ll finally tell us she’s stage four so we understand the reasoning for this currently-inexplicable wait.
 
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Which is exactly why I don’t believe it’s stage three anymore. They were originally hoping the chemo would shrink the tumor and it didn’t, and the radio therapy was ineffective as well. It stopped it from spreading but it didn’t reduce the tumor as they hoped. That plus the mucin makes me think she could have MAC, but I don’t know what her doctors are thinking because we only hear it from Tiffany.

I know a lot of people are assuming they’re writing her off or not giving her adequate care, but until there is some evidence of that, I‘m inclined to side with them over her. The Royal Marsden and her surgeon are top notch, so I imagine there’s a reason for everything they are or aren’t doing. I don’t know why they aren’t doing maintenance chemo, but if they were actually prepping for surgery, that could explain it. Though Tiffany is talking like she has no intention of doing surgery.

I really hope she knows there’s only one way this will end without it. I think she’s out of her mind a bit and not emotionally mature enough to grasp the gravity of her situation, so someone needs to try to get through to her if there’s still time. Like a mental health professional. It’s easy to trick yourself into thinking you’re better because you feel better, but if you know cancer, you know this isn’t how it works. Feeling well can spiral into hell in such a short time.
Everything is starting to make sense. There are no 2 ways about it. Surgery to remove the cancer or it becomes terminal. I think the family knows the gravity of her case. When I saw the family celebrating her 30th birthday party at the park, I thought maybe they just wanted to have some nice memories of her. Grim as it may sound, you and the other doctors in this forum have explained her case pretty clearly. I think she is living one day at a time now. 😰
 
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Everything is starting to make sense. There are no 2 ways about it. Surgery to remove the cancer or it becomes terminal. I think the family knows the gravity of her case. When I saw the family celebrating her 30th birthday party at the park, I thought maybe they just wanted to have some nice memories of her. Grim as it may sound, you and the other doctors in this forum have explained her case pretty clearly. I think she is living one day at a time now. 😰
I went back to listen to the video with her oncologist on the phone on Sept. 22, and she said he told her all the scans and tests are not showing up as cancer but as dense scar tissue, and suggested she wait for surgery.

I don’t think she wrapped her mind around what the surgery would mean because it was more of an idea than reality. It was something to look forward to back then, to keep her moving. It’s possible she balked when the opportunity arose and asked about delaying. If this happened, she’d get the terminology from her doctor, but I can see her inquiring about ways to delay, despite refusal to educate herself on her cancer.

If this is how it played out, the surgeon would have to lay out the options and explain what deferral means for her. He allegedly said it could be inoperable in six weeks.

If he really said this, I am extremely skeptical of the claim that he wants to wait. As an alternative example: she could’ve said she wants to wait despite his urgency, and he’d have no choice but to respect that. Because she’s looking for any reason to avoid it, she could see that reluctant agreeability as confirmation that it’s the “better” choice. Even if it’s not. People hear what they wanna hear, and so much can get lost in translation. More than one scenario can occur where the patient’s consent is murky.

Bottom line: if the surgeon really wants to wait, then something changed for the worse from her other appointment. It’s not urgent to save her life. It’s not good news. The best case scenario is that she’ll still be operable in a couple weeks and will choose to have the surgery even though she’s saying she won’t. Or she’ll finally tell us she’s stage four so we understand the reasoning for this currently-inexplicable wait.
I just mentioned this to Ann. What do you make of her oncologist telling her the scans show no cancer but dense scar tissue instead?
 
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I saw that video and we didn’t hear the phone call with her oncologist. We heard Tiffany try to interpret what the oncologist said, but it didn’t make sense. I wish I were wrong, but the presence of scar tissue wouldn’t negate urgency of surgery. Even in a hypothetical world where it’s all scar tissue (doubtful), the tumor still needs to be removed immediately, as it‘ll worsen and metastasize in a matter of time. It’s already perilously close to being inoperable. I don’t believe she understood the results nor is she accurately portraying the reasoning for “wait and watch“. There’s a reason she’s not playing the phone calls directly. There could be some mental editing as well.
 
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I saw that video and we didn’t hear the phone call with her oncologist. We heard Tiffany try to interpret what the oncologist said, but it didn’t make sense. I wish I were wrong, but the presence of scar tissue wouldn’t negate urgency of surgery. Even in a hypothetical world where it’s all scar tissue (doubtful), the tumor still needs to be removed immediately, as it‘ll worsen and metastasize in a matter of time. It’s already perilously close to being inoperable. I don’t believe she understood the results nor is she accurately portraying the reasoning for “wait and watch“. There’s a reason she’s not playing the phone calls directly. There could be some mental editing as well.
thank you for giving me your insight.
 
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thank you for giving me your insight.
I listened to the video again, and we can hear a little snippet of what the surgeon said. It was something like, “they did the examination under anesthetic, the UA, within there they couldn’t see…” and then it cuts off. I guess the rest of it is supposed to be “any cancer”? But Tiffany cuts the recording there. Then she reads the notes she took, and basically according to her, he said that according to all the scans, nothing is showing up as cancer. It is only dense scar tissue. But she forgot to ask him if it’s still a tumor, she said. But she asked him if he is confident in waiting, and he said yes, waiting is the best option. And she asked about the lungs and he said it hasn’t changed or grown, but they will continue to monitor.
 
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Does writing in her bloody BULLET JOURNAL count as writing a book? :sneaky:
As somebody who has jadedly worked in publishing for a long time, I can tell you that the sort of 'book' she is writing is probably exactly the sort of book that a publisher would get excited about as nowadays they tend to sign people on the size of their social media following above all else.
 
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The thing with the waiting is that it could be because he sees no value in it anymore, not actually because there is no cancer. I mean look at her recovery from just the biopsy, it was horrific - so how on earth could she handle the PE? And that’s just physically, mentally I don’t think she could at all.
 
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I was just rewatching the old video mentioned earlier when she met with her surgeon and the one directly following it. That is the Tiffany I remember connecting with and wanting to support in her journey, she was so raw and honest.

But her apologising to her supporters for the bad news emphasised again how much videotaping and having subs changes her perspective, thinking that there's an expectation on her to only have good news to share with her audience. Having even more supporters now and trying to polish her videos, I fear she feels even more pressure to have a happy ending? Or perhaps, on the converse side, if she's received good news (see below), she's afraid to have her viewers up and leave her now? That could well be a possibility too seeing as how focused she's become on increasing her subscriber level.

She reminded me in that video how her surgeon spoke in plain language to her, drew his chair close, and drew a diagram. I have no doubt he spoke equally plainly and in "relatable" (her word) language to ensure she understood this last time, too.

I also went back to look at the studies I found on "watch and wait" for colorectal cancer.

I think what Tiffany might have failed to communicate fully to us is that based on the scans, examination and biopsies, she achieved a "complete clinical response" ("cCr") or pCr (pathological complete response [biopsy confirmed]) following neoadjuvant chemoradiotherapy. I am unclear how this occurred when prior scans showed no change in her status only 4 months ago following the chemo and radiotherapy, yet now they might.

I hope this research is okay to share here for educational purposes under Fair Use exception.

Firstly, it's important to appreciate that a cCr or pCr are not black and white, perhaps this is where Tiffany's confusion lies as it's not as clear cut as doing a boomerang dance singing "I'm cancer free, I'm cancer-free" at this point. It IS complicated, and I've only touched the surface, being a nonmedical layperson. I think, like with any cancer, you're always looking at survival rates and relapse rates. It's not "cancer free" or "cured", But a cCr or cPr is pretty darn good news!

A "watch and wait" approach appears to be premised on achieving a cCr or pCr first though. There is still significant debate and controversy in a watch and wait approach, so it is not established science or established protocol.

The following reviews a "watch and wait" approach in comparison to surgical resection for LARC ("locally advanced rectal cancer"), the full articles can be read in the links provided. Perhaps any medically knowledgeable people can weigh in on this too.

From:


"According to the available data, from 10%-25% of patients with LARC achieve a pathologic complete response (pCR) - defined as the absence of viable residual tumour cells in the surgical specimen - after neoadjuvant treatment..."

And further down:

"Subsequent studies carried out by other groups support these data, as shown in a recent systematic review[12] that evaluated a total of 23 studies (867 patients), concluding that there are no significant differences in OS [overall survival] and local recurrence between surgically-treated patients and those managed with the watch and wait protocol. However, larger prospective studies are needed to confirm long-term outcomes and to resolve controversies surrounding the selection of candidates for watch and wait, the accurate determination of cCR, and the optimal follow-up protocols."

And:


"Patients in whom the watch-and-wait strategy was adopted exhibited a higher rate of local recurrences (14.9% vs. 1.1%), but most (85.7%) were salvageable. Three-year non-regrowth local recurrence-free survival was comparable between the two groups (98% vs. 98%, P = 0.506), but the watch-and-wait group presented an obvious advantage in terms of sphincter preservation, especially in patients with a tumor located within 3 cm of the anal verge (89.7% vs. 41.2%, P < 0.001). Three-year distant metastasis-free survival (88% in the watch-and-wait group vs. 89% in the surgical group, P = 0.874), 3-year disease-specific survival (99% vs. 96%, P = 0.643) and overall survival (99% vs. 96%, P = 0.905) were also comparable between the two groups, although a higher rate (35.7%) of distant metastases was observed in patients who exhibited local regrowth in the watch-and-wait group."

A later prospective cohort study of 84 subjects in China compared a watch and wait group ("WW") to a surgery group and found that:

"There was no significant difference in the recurrence and metastasis rate between the two groups."

They concluded:

"The WW strategy is a feasible treatment option in patients with cCR after NCRT [neoadjuvant chemoradiotherapy]. Surgery may not bring benefits to these cCR patients."


And an earlier meta analysis discussed:

"One of the controversial issues of this pathological entity is sphincter preservation, which is still impossible in up to 50% of low rectum tumor cases, causing a negative impact on the physical and emotional sphere as well as on the quality of life of patients and even their families [1, 3, 6].

The WW strategy is increasingly accepted as it allows organ preservation and avoids surgical morbidity and mortality; however, despite the large number of publications, it is under constant evaluation and continues to be considered a controversial topic [9, 14,15,16,17]."

...

"Oncological results in operated patients with pathological complete response were similar to those in patients under a watch and wait strategy mediating a systematic and personalized evaluation. Surgery can safely be deferred in clinical complete responders."


There may be more other published studies that I'm not aware of, I'm sure there are, as I haven't done an extensive search.

So, while I may still have some gaps in my understanding, this information may at least explain WHAT they're doing if I still may be uncertain as to the why or how she matched with this approach, given what we know/don't know about her past treatment response. But, it does appear from the research that a fair # of patients with LARC DO achieve cCr or pCr following initial treatment. I'd have to dig further into the weeds to parse out if any patient profiles lend themselves more to this; I did read that younger age is not a beneficial factor to better outcome.

But this may at least explain where we're at today with no treatment or surgery and only more scans and biopsies scheduled.
 
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I listened to the video again, and we can hear a little snippet of what the surgeon said. It was something like, “they did the examination under anesthetic, the UA, within there they couldn’t see…” and then it cuts off. I guess the rest of it is supposed to be “any cancer”? But Tiffany cuts the recording there. Then she reads the notes she took, and basically according to her, he said that according to all the scans, nothing is showing up as cancer. It is only dense scar tissue. But she forgot to ask him if it’s still a tumor, she said. But she asked him if he is confident in waiting, and he said yes, waiting is the best option. And she asked about the lungs and he said it hasn’t changed or grown, but they will continue to monitor.
what is the UA?
 
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I was just rewatching the old video mentioned earlier when she met with her surgeon and the one directly following it. That is the Tiffany I remember connecting with and wanting to support in her journey, she was so raw and honest.

But her apologising to her supporters for the bad news emphasised again how much videotaping and having subs changes her perspective, thinking that there's an expectation on her to only have good news to share with her audience. Having even more supporters now and trying to polish her videos, I fear she feels even more pressure to have a happy ending? Or perhaps, on the converse side, if she's received good news (see below), she's afraid to have her viewers up and leave her now? That could well be a possibility too seeing as how focused she's become on increasing her subscriber level.

She reminded me in that video how her surgeon spoke in plain language to her, drew his chair close, and drew a diagram. I have no doubt he spoke equally plainly and in "relatable" (her word) language to ensure she understood this last time, too.

I also went back to look at the studies I found on "watch and wait" for colorectal cancer.

I think what Tiffany might have failed to communicate fully to us is that based on the scans, examination and biopsies, she achieved a "complete clinical response" ("cCr") or pCr (pathological complete response [biopsy confirmed]) following neoadjuvant chemoradiotherapy. I am unclear how this occurred when prior scans showed no change in her status only 4 months ago following the chemo and radiotherapy, yet now they might.

I hope this research is okay to share here for educational purposes under Fair Use exception.

Firstly, it's important to appreciate that a cCr or pCr are not black and white, perhaps this is where Tiffany's confusion lies as it's not as clear cut as doing a boomerang dance singing "I'm cancer free, I'm cancer-free" at this point. It IS complicated, and I've only touched the surface, being a nonmedical layperson. I think, like with any cancer, you're always looking at survival rates and relapse rates. It's not "cancer free" or "cured", But a cCr or cPr is pretty darn good news!

A "watch and wait" approach appears to be premised on achieving a cCr or pCr first though. There is still significant debate and controversy in a watch and wait approach, so it is not established science or established protocol.

The following reviews a "watch and wait" approach in comparison to surgical resection for LARC ("locally advanced rectal cancer"), the full articles can be read in the links provided. Perhaps any medically knowledgeable people can weigh in on this too.

From:


"According to the available data, from 10%-25% of patients with LARC achieve a pathologic complete response (pCR) - defined as the absence of viable residual tumour cells in the surgical specimen - after neoadjuvant treatment..."

And further down:

"Subsequent studies carried out by other groups support these data, as shown in a recent systematic review[12] that evaluated a total of 23 studies (867 patients), concluding that there are no significant differences in OS [overall survival] and local recurrence between surgically-treated patients and those managed with the watch and wait protocol. However, larger prospective studies are needed to confirm long-term outcomes and to resolve controversies surrounding the selection of candidates for watch and wait, the accurate determination of cCR, and the optimal follow-up protocols."

And:


"Patients in whom the watch-and-wait strategy was adopted exhibited a higher rate of local recurrences (14.9% vs. 1.1%), but most (85.7%) were salvageable. Three-year non-regrowth local recurrence-free survival was comparable between the two groups (98% vs. 98%, P = 0.506), but the watch-and-wait group presented an obvious advantage in terms of sphincter preservation, especially in patients with a tumor located within 3 cm of the anal verge (89.7% vs. 41.2%, P < 0.001). Three-year distant metastasis-free survival (88% in the watch-and-wait group vs. 89% in the surgical group, P = 0.874), 3-year disease-specific survival (99% vs. 96%, P = 0.643) and overall survival (99% vs. 96%, P = 0.905) were also comparable between the two groups, although a higher rate (35.7%) of distant metastases was observed in patients who exhibited local regrowth in the watch-and-wait group."

A later prospective cohort study of 84 subjects in China compared a watch and wait group ("WW") to a surgery group and found that:

"There was no significant difference in the recurrence and metastasis rate between the two groups."

They concluded:

"The WW strategy is a feasible treatment option in patients with cCR after NCRT [neoadjuvant chemoradiotherapy]. Surgery may not bring benefits to these cCR patients."


And an earlier meta analysis discussed:

"One of the controversial issues of this pathological entity is sphincter preservation, which is still impossible in up to 50% of low rectum tumor cases, causing a negative impact on the physical and emotional sphere as well as on the quality of life of patients and even their families [1, 3, 6].

The WW strategy is increasingly accepted as it allows organ preservation and avoids surgical morbidity and mortality; however, despite the large number of publications, it is under constant evaluation and continues to be considered a controversial topic [9, 14,15,16,17]."

...

"Oncological results in operated patients with pathological complete response were similar to those in patients under a watch and wait strategy mediating a systematic and personalized evaluation. Surgery can safely be deferred in clinical complete responders."


There may be more other published studies that I'm not aware of, I'm sure there are, as I haven't done an extensive search.

So, while I may still have some gaps in my understanding, this information may at least explain WHAT they're doing if I still may be uncertain as to the why or how she matched with this approach, given what we know/don't know about her past treatment response. But, it does appear from the research that a fair # of patients with LARC DO achieve cCr or pCr following initial treatment. I'd have to dig further into the weeds to parse out if any patient profiles lend themselves more to this; I did read that younger age is not a beneficial factor to better outcome.

But this may at least explain where we're at today with no treatment or surgery and only more scans and biopsies scheduled.
Tiffany had virtually no response to NCRT, so the notion that she'd have a full clinical response to minimal maintenance chemo is next to impossible. If the tumour isn't being removed as part of treatment, that would change her staging to IV, where they monitor recurrence and attack it individually. It's management, not curative. Without removing the tumour, they can't verify a complete response nor can they re-open the window of opportunity for surgery.
 
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I was just rewatching the old video mentioned earlier when she met with her surgeon and the one directly following it. That is the Tiffany I remember connecting with and wanting to support in her journey, she was so raw and honest.

But her apologising to her supporters for the bad news emphasised again how much videotaping and having subs changes her perspective, thinking that there's an expectation on her to only have good news to share with her audience. Having even more supporters now and trying to polish her videos, I fear she feels even more pressure to have a happy ending? Or perhaps, on the converse side, if she's received good news (see below), she's afraid to have her viewers up and leave her now? That could well be a possibility too seeing as how focused she's become on increasing her subscriber level.

She reminded me in that video how her surgeon spoke in plain language to her, drew his chair close, and drew a diagram. I have no doubt he spoke equally plainly and in "relatable" (her word) language to ensure she understood this last time, too.

I also went back to look at the studies I found on "watch and wait" for colorectal cancer.

I think what Tiffany might have failed to communicate fully to us is that based on the scans, examination and biopsies, she achieved a "complete clinical response" ("cCr") or pCr (pathological complete response [biopsy confirmed]) following neoadjuvant chemoradiotherapy. I am unclear how this occurred when prior scans showed no change in her status only 4 months ago following the chemo and radiotherapy, yet now they might.

I hope this research is okay to share here for educational purposes under Fair Use exception.

Firstly, it's important to appreciate that a cCr or pCr are not black and white, perhaps this is where Tiffany's confusion lies as it's not as clear cut as doing a boomerang dance singing "I'm cancer free, I'm cancer-free" at this point. It IS complicated, and I've only touched the surface, being a nonmedical layperson. I think, like with any cancer, you're always looking at survival rates and relapse rates. It's not "cancer free" or "cured", But a cCr or cPr is pretty darn good news!

A "watch and wait" approach appears to be premised on achieving a cCr or pCr first though. There is still significant debate and controversy in a watch and wait approach, so it is not established science or established protocol.

The following reviews a "watch and wait" approach in comparison to surgical resection for LARC ("locally advanced rectal cancer"), the full articles can be read in the links provided. Perhaps any medically knowledgeable people can weigh in on this too.

From:


"According to the available data, from 10%-25% of patients with LARC achieve a pathologic complete response (pCR) - defined as the absence of viable residual tumour cells in the surgical specimen - after neoadjuvant treatment..."

And further down:

"Subsequent studies carried out by other groups support these data, as shown in a recent systematic review[12] that evaluated a total of 23 studies (867 patients), concluding that there are no significant differences in OS [overall survival] and local recurrence between surgically-treated patients and those managed with the watch and wait protocol. However, larger prospective studies are needed to confirm long-term outcomes and to resolve controversies surrounding the selection of candidates for watch and wait, the accurate determination of cCR, and the optimal follow-up protocols."

And:


"Patients in whom the watch-and-wait strategy was adopted exhibited a higher rate of local recurrences (14.9% vs. 1.1%), but most (85.7%) were salvageable. Three-year non-regrowth local recurrence-free survival was comparable between the two groups (98% vs. 98%, P = 0.506), but the watch-and-wait group presented an obvious advantage in terms of sphincter preservation, especially in patients with a tumor located within 3 cm of the anal verge (89.7% vs. 41.2%, P < 0.001). Three-year distant metastasis-free survival (88% in the watch-and-wait group vs. 89% in the surgical group, P = 0.874), 3-year disease-specific survival (99% vs. 96%, P = 0.643) and overall survival (99% vs. 96%, P = 0.905) were also comparable between the two groups, although a higher rate (35.7%) of distant metastases was observed in patients who exhibited local regrowth in the watch-and-wait group."

A later prospective cohort study of 84 subjects in China compared a watch and wait group ("WW") to a surgery group and found that:

"There was no significant difference in the recurrence and metastasis rate between the two groups."

They concluded:

"The WW strategy is a feasible treatment option in patients with cCR after NCRT [neoadjuvant chemoradiotherapy]. Surgery may not bring benefits to these cCR patients."


And an earlier meta analysis discussed:

"One of the controversial issues of this pathological entity is sphincter preservation, which is still impossible in up to 50% of low rectum tumor cases, causing a negative impact on the physical and emotional sphere as well as on the quality of life of patients and even their families [1, 3, 6].

The WW strategy is increasingly accepted as it allows organ preservation and avoids surgical morbidity and mortality; however, despite the large number of publications, it is under constant evaluation and continues to be considered a controversial topic [9, 14,15,16,17]."

...

"Oncological results in operated patients with pathological complete response were similar to those in patients under a watch and wait strategy mediating a systematic and personalized evaluation. Surgery can safely be deferred in clinical complete responders."


There may be more other published studies that I'm not aware of, I'm sure there are, as I haven't done an extensive search.

So, while I may still have some gaps in my understanding, this information may at least explain WHAT they're doing if I still may be uncertain as to the why or how she matched with this approach, given what we know/don't know about her past treatment response. But, it does appear from the research that a fair # of patients with LARC DO achieve cCr or pCr following initial treatment. I'd have to dig further into the weeds to parse out if any patient profiles lend themselves more to this; I did read that younger age is not a beneficial factor to better outcome.

But this may at least explain where we're at today with no treatment or surgery and only more scans and biopsies scheduled.
That actually fits into the narrative. It could be it. Would be great if we could hear from someone who went through the watch and wait approach and how they're doing now.
 
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As somebody who has jadedly worked in publishing for a long time, I can tell you that the sort of 'book' she is writing is probably exactly the sort of book that a publisher would get excited about as nowadays they tend to sign people on the size of their social media following above all else.
I can well believe it, it’s exactly the same in the modelling industry. Social media is king in today’s world, so depressing. ☹
 
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