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EmyUrban

Well-known member
Was she declared NED?..I don't think her surgeon said surgery wasn't appropriate,he did give her the choice along with the wait and watch option,she chose the second..she is under the best care in the best hospital but as usual with Tiffany she has led her religious freaks in her comments to complain about not only her surgeon but the hospital as a whole,those are the ones who should be blocked and deleted not the helpful ones.
It’s difficult to declare people NED when they didn’t have the surgery but to be considered nearly complete response or a good candidate for wait and watch trial you have to be stable : no growth of the tumour , nothing lits up on the petscan no cancerous activity on MRI and clear biopsies . Obviously the patients without surgery/ on the way to the wait and watch trial are declared « NED as a best guess according to the results » and some doctors argue that NED is never certain without surgery so should not be used. They say complete response or nearly complete response.
She didn’t want the surgery and the team of surgeons are not completely in favor of it either, just look at the way the last « new » surgeon was afraid of cutting through …
 
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Wildflowerss

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This is OLD clinical trial/ research protocol ....it has been closed to recruitment for years and has been reported so it is not open to new recruits!
The results of this trial is how they now base current treatment
Thank you for that information.
 
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Saydee

VIP Member


Active surveillance
This means regular, very close monitoring of the cancer so that the patient can be offered curative treatment if the cancer progresses. This is suitable for most men with low risk prostate cancer. Close monitoring is required, with PSAs, regular MRIs and sometimes repeat biopsies. Treatment (surgery, radiotherapy or brachytherapy) is offered if and when the cancer progresses.

Watchful waiting
This term is used to describe a non-intensive form of follow-up that rarely involves tests and relies more heavily on changes in a patient’s symptoms to identify if treatment is needed. This is a non-curative strategy for patients who have multiple comorbidities or a short life expectancy. Palliative treatment is only advised if the patient develops symptoms from the primary cancer or the metastases.

Symptoms to look out for:
  • Bone pain
  • Progressive problems with passing urine
  • Deteriorating renal function
It’s important for GPs to know the different treatment intents of the two strategies, which are sometimes confused.
 
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EmyUrban

Well-known member
I've worked in oncology research for over 15 years....this trial is over 10 years old and is the basis for current practice - that's why trials are done- to hopefully improve patient outcomes and try new approaches/ treatments-
however it should be noted not all trial results are positive - but still answer v important clinical questions- without trials there would be no advancements in treatment
I totally agree I know what a trial is and why it’s important and that all the results are not positive …
 
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EmyUrban

Well-known member
It was mentioned in at least 2 vlogs. But I remember him saying that she has 6 - 12 months to live without surgery. He said that he will attempt it and that without it she will not live. This was after she was panicking about having been told that the tumour did not shrink and surgery may not be possible and that the surgeon and her oncologists needed some time to think about what to do with her. And he said she will have chemo to prevent spreading. I think we are all remembering things differently haha. You remember him saying that she has 6 - 12 months to live without treatment, no? I would need to get the transcripts from those videos to check but I cannot bear to look at her.
I don’t remember any of those things from the videos alas haha I just remember a comment that I’ve read and it was 6-12 months to live without treatment … I was wondering in what videos but I cannot watch them all …
 
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Wildflowerss

Well-known member
I dont see her as better. Her onc flatly told her the tumor is still there and hadnt changed after her last scans. Shes on constant morphine, in pain, thinner, not eating well. Shes been on oral morphine a long time. That is not normal for someone who's getting better.
Very good points.

Haha no problem, I have some time off this week so I'll be happy to fill in for now.

I imagine her surgeon is regretting his amazing bedside manners now. He should have kept his chair on the other side of the desk 😂

The oncologist, other surgeon and her team have a shocked pikachu face at how much she praises him and forgets them LOL
Its unbelievable. She acts as id her oncologist is chopped liver.
 
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Cariad

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No but if you are going to spout that kind of nonsense you’d better be able to provide credible evidence. Otherwise it’s just crap a La Ellie Grey et all.
Although v low incidence, It can happen- but new biopsy procedures are much more robust
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4015162/
core biopsies done in 70's /80's did produce seeding of breast tumours- thankfully much rarer these days as sampling techniques have improved
 
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BettyCrockerr

VIP Member
It wasnt sprung on her. I believe it was given to her as an option based on her initial biopsies and scan results by her surgeon and or team. They know she really wanted to try and avoid a total exenteration and they had this option of a watch and wait trial that is going on in different countries. They had to wait till her follow up in his office because they had to make sure she met the inclusion criteria. It is voluntary. Otherwise, she can opt out and have the surgery, as he offered. She chose to opt in to the study. Why she doesn't fully explain this is unclear.
Where are you getting this information regarding her being offered a place on a trial from?????
 
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Doc22

Active member
I agree wait and watch is for people who had complete response for chemo radiation never said otherwise … Sometimes though in some trials they do accept « nearly » complete response and T4 tumours. Hopefully we will soon know what the medical team has decided about her treatment plan and we will understand better … Not sure though … Maybe it’s not a real wait and watch trial and they just delay the surgery … But they surely hope/ think she is nearly complete response if not they would obviously do the surgery as soon as possible or at least they would try something …
The whole surgeon situation is strange. First suggested her to wait (for what) then didn't do her biopsy himself even the second biopsy was his idea. He should have offered her the best option, Tiff is not the type of person who can do informed desicion since she is afraid to do research about her disease. She should seek another surgeon.
 
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BettyCrockerr

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It has been already 1 year since she started chemotherapy. Most people would be done with their treatment in a year. I agree it is a prestigious institute. But individual doctors do mistakes all the time, of course not intentionally.
You are talking absolute rubbish.
 
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No it doesn't happen.
Tiffany will have been visited in the recovery room before being taken to the ward. There someone will have told her what happened in theatre. Tiffany did say that she felt groggy and couldn't remember much. Thats fair enough, most patients don't remember much in the recovery area.
Morphine pump was arranged due to the pain Tiffany had after her last biopsy. Emergency hospital vists are costly to the NHS and if they can be avoided, plans will be put in place. Admitting her this time and offering a morphine pump prevents post A&E visits.
Oramorphe on discharge is absolutely normal after having been on Morphine pump. I personally could not understand them giving her antisickness during the night though, most doctors would discontinue the morphine pump because thats what causes nausea & sickness.

Before discharging a patient a plan needs to be put in place. Tiffany will have been visited by a consultant and he/she will have explained the planned procedure and what happened. Tiffany will have also been told what happens next and told who to contact, if she has any issues. You are right, they can't and don't just discharge patients without informing them. I saw posts 10 hours from Tiffany saying she is crying, scared and needs to get a biopsy.
It's cruel that she leads people on who truely care about her. They are there thinking Tiffany is a young vulnerable little girl who is on palliative care and the truth is being hidden from her. Telling her she might have a blockage and the cancer might have spread so much its caused a blockage? If Tiffany had a bowel blockage, she wouldn't have been discharged home! My friend had a blockage which burst, causing sepsis. One operation later and she was out of hospital fitted with a stoma bag.


Thats the maggies centre that I mentioned :) True diamonds.
This exactly. Robust discharge plan Was made.
 
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EmyUrban

Well-known member
once she found out the full extent of what the surgery entailed She went off the idea..and who can blame her it’s brutal..so far as I understand the pre surgery steps for this particular surgery involve besides the regular tests but also an assessment of whether she’d be mentally up to living with all the consequences of said surgery..and seriously do they actually need to assess Tiffany to establish that?..can You even imagine waking up from this let alone living? with the constant reminders..I sadly don’t see her doing that..so they’ve done probably the best for her?..
Sure Tiffany does not appear to be mentally up to living with all the consequences yet … But according to what she said, surgeon never said surgery was off the table completely . I think that if there is anything on MRI he might push for surgery as soon as possible, Tiffany ready or not.
 
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EmyUrban

Well-known member
I can tell you that when they are uncertain of how far up they may need to go, and if they know in advance that biopsies are needed, they want a full bowel prep. That is why people recommend a colonoscopy over a sigmoid bc the prep is the same and you may not catch everything in the lower 1/3 of bowel. I know in her case they likely know that the tumour is in the lower level but still, an enema might be ok for routine sigmoid scopes, but for her? Maybe they know she is already partially obstructed. And a bowel prep would be not possible. The use of a general anaesthetic for a sigmoid is very suspect. She could have a conscious sedation instead. So what other procedure was done requiring a general? I believe some laparoscopic abd exploration. I asked her directly and she never denies it outright. She just goes right to the biopsy. Singular. Only suggests the bowel scope. Never anything else. Its all sketchy as many point out.
I think a bowel prep is possible (she can hydrate orally) but was not needed. It’s very very low lying and even that low the surgeon could not access to it. Use of general anesthesia is normal in her case because the surgeon knew beforehand he would have to cut and cut and cut through scar tissues adhesions etc before reaching the tumour … If the scar tissue he went through was the tumour he would have been able to get a sample but he could not probably only went through scar tissue/ adhesions.
 
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Sheba

Active member
Yep, her bum may be a hot mess but she is on track with the plan. All the confusion is just her.

At least she's eating - I don't care to see it but she needs to build up strength for next steps.
 
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Idrisrex

Chatty Member
She is more terrified of losing Darling then dying. Literally. I said this mo this ago. They have not been in a long term relationship IMO. Maybe 3 yrs top. More like 2.5 maybe. She knew him for 5 yrs bc they are both optometrists but that doesnt mean dating. he isn't in invested enough to fight for her survival despite all else. They both found out about the actual surgery details and here we are. Neither of them coukd deal with the post surgery realities.
there is no way in hell that a conos opy or sigmoidoscopy would not necessitate a bowel prep the day or two ahead. No way! Some patients ignore the prep, or half way do it and the procedure cannot proceed. She never mentioned a prep so we do not know if she actually did it. That could be why they were not able to do the biopsy. Or, the tumour has grown to a point that even the smallest of scopes could not safely pass. This is more worrisome. if so, she will be blocked and emergency surgery will be needed if possible at all. Just to clear the obstruction. I question her prep though. i believe she will string this out until she just isnt well enough to film or edit. She will just ghost social media and that will be that. We will never entirely know what happened.
I think you are so right. I also have questioned the prep procedure, because there must be a small or a large prep. (Small prep is an enema and the big one is Klean prep scheme for 2 days in a row including dietary instructions). The doctors can't see a thing if this is not done correctly and indeed the procedure will be terminated. But the will not gets viewers on your YT channel when you confess that you haven't prep enough. The other possibility of the mass the scope can't surpass is the second possibility. It explains in any case the excessive nausea and vomiting, because there is a serious blockage.
 
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Doc22

Active member
We only know what Tiffany wants us to know. I highly doubt her medical team is inept and that things played out exactly as she describes. She, Amma, and Matt are clearly naive, afraid to hear the truth, and don't ask the necessary questions. My god, she and Amma just speculated that the reason they couldnt perform the biopsy is that the tumor is gone!!! They are living in la la land. How can 1 patient leave EVERY medical appt for the last year so confused? Its simply not possible! Tiffany is either refusing to listen, believing only what she wants to believe or else deliberately misleading her subs to increase viewership and profits. Probably a combination of all three.
That is true, she believes that her cancer is gone, even was talking about returning to work. Let's pray it is true.
 
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Ju19

VIP Member
For all those that don't want to watch : I tried my best! Got tired, she repeats the same thing over and over so many times. Brackets are just my comments not anything she says haha.

Starts off with her welcoming her oh so loving Tiffany thinks family(who she’s blocked half off already) in her bedroom with a cozy robe on. Hope you’re all well. She wanted to tell us that she’s okay. She hasn’t gotten any results yet. She explains that the scan results are collected and then they have an MDT meeting with the oncologist, her surgeon and with the team and they tell her what’s happening. She says that people have been mentioning that ‘she definitely has the results by now’.. Her surgeon took a little break as it’s half term for his children. She hasn’t been posting much in insta or social media, just uploading these YouTube videos. She’s been in her own space and she says it’s important for her to be a little bit selfish right now. She remarks that the comment section has been hectic and that she understand we care for her, and it’s not all of us, and she shouldn’t focus on the ‘bad people’. She goes on to say that Youtube is her safe zone. If we’re not happy with her but still want to watch, just think about the comment you’re leaving for her. She’s the one who’s dealing with this. She’s the one who has to wait for results and live with this. Not many people share as much as she does, especially when you have cancer. Not many people share online what it’s like. And she put out a lot. And she thinks it’s her fault. She ponders - Maybe she’s messed up. Loads of I don’t knows. She’s going to put the comments section one review. She has to approve the comments now. She has a family member that they will help moderate the comments too. They will review the comments before they are accepted.

When she’s in bed and she can’t sleep, she replies to the comments. And if she sees something horrible, it makes her think she’s making a mistake. She’s already going through enough and she doesn’t need extra stress. She needs to think about what’s important to her. She like posting videos. Should she take a break?(she asks herself), She has a lot she needs to think about. She’s asking everyone to be kind - that’s the most important thing ever. If you’re not happy with her, that’s fine, you don’t need to watch. At this time in her life she doesn’t need this. Her priority is about getting better. Her priority is her. It’s a shame for her if she doesn’t upload YT videos and take a break from it all and it’s not fair. Apologises for the rant. At the end of the week she gets her results. She hopes she will update us very soon. She still doesn’t know. She says it’s only her, she’s the only one editing, she’s only one person. Mentally she’s fine today and can edit. Just remember she can’t put out videos as soon as she learns information, it takes her a while to edit.

In the hospital - blood test done, taken tumour markers. Good to see the results from that, last time she saw them, they were fairly low. She can’t remember the last time she had them done. Couple of days to get those results. Waiting for the oral morphine and the anti sickness and then she can go home. She feels a lot better after seeing her surgeon - pans the camera to Amma and asking her. They were both crying so much to him. Okay he’s fine. He’s been so unwell and she hasn’t had a chance to talk to him and she feels lucky to see him today. If they said he’ll give you a Call she would have been devastated. She would have left upset. Seeing him and knowing that there is another plan ahead she feels better. Will need to wait a week and half for the results and then the surgeon has a little break with half term. She’s waited this long and it’s taking a little bit longer. She got a bit emotional she didn’t his surgeon. When you know a doctor and you feel like you have this bond because he knows your body so that’s why she got emotional. She loves everyone here, she just needed to see her doctor and her nurse and now she feels good. They knew she had to see him because she was so emotional. Even though he’s not doing surgery since he’s not well, he’s doing face to face clinic appointments. Hopefully he’ll be okay soon to do any procedure if he needs to do any.

She has a vanilla yoghurt and jacket potato with cheese and apple juice(someone please rescue her from her diet). Tell us what you’re eating because she gets inspiration? Beeping in the hospital, she complains that it happens all day. Night time she was okay, in the morning when she heard the results that they didn’t take the biopsy and she went downhill, she was an emotional wreck and it’s been a long time since she’s felt like that. ‘What do you mean you didn’t take any biposy’. ‘It’s fine, it has to be okay’. It makes sense why only one surgeon said yes to doing surgery in the first place. It is very difficult that area and she’s so grateful she found her surgeon and glad he’s never given up on her and he’s fighting for her. He’s just not well. Th minute he’s better and she’s the first on his list and it’s a good thing he’s a good thing he’s back in the hospital and it’s good for all of his patients. Most of his patients must have been worried since we rely on him and solely on him. He’s the only doctor that can sort me out, here always.

She gets to leave, she’s happy to have the discharge letter. She’s trying to be better with all the letters she gets from the hospital. The letter tells her that they’ve not taken the biopsy and everything else. She has her beloved morphine and anti sickness too.

Finally leaving the hospital. Struggling… her bum bum is bleeding and it’s so sore. She still can’t believe they didn’t take a biopsy. They tried to get in but it didn’t work. All of that and no biopsy, laughing at how crazy it is. It doesn’t feel real. She doesn’t know if she’s explained everything, since she’s been drugged up. Will explain in the next video, if you have questions, leave them down below(she will never get down to answering them). They gave her a lot of morphine to take home. No wheelchair - sore to sit on and would rather walk. Sad that she’s in pain and bleeding and they didn’t even take a biopsy(how many times does the woman repeat this?! I’m actually tried of writing this haha). Have to accept the outcome and it sucks because she might have to do the again in a couple of week, depending on the scan results. Let’s just make this positive and think she’ll be home and rest in her own bed. Who cares, right? Make myself think it doesn’t matter. At least I got to see my surgeon(God himself) and ask him what happened to him. He had back issues and that’s why he’s not doing any surgeries(lucky she went for the wait option then since her god broke his back).

In the car and off to a Pooja sweets to get a paneer roll(perfect for colorectal cancer) because she’s had such a hectic time and she hasn’t really had any food and she’s just been nibbling and she hasn’t really eaten anything. Her mind has been everywhere. She’s very good at blocking things out and Amma needs to talk things out and she’s trying to block it out until she gets results. No biopsy result just the CT scan and MRI/PET SCAN when the surgeon comes back from his holiday(surgeon needs to be worried he has a stage 5 clinger over here). From now on she’s only going to see him and any time she makes an appointment she requesting to see him, because there’s no point otherwise, no one else knows her situation(everyone else is useless apparently), she has to be firm.

She feels bad for Amma, she’s never seen her cry so much, She cried so much to the surgeon and all of it is a bit of a shock to us, how can they not take a biopsy? They said that with the radiotherapy it can cause the area to narrow. Which she understands, but in August her surgeon was able to get through this narrowing - that’s why she was in a lot of pain. He forced himself and the are to open. She feels so bad for Amma, she’s trying to be strong for her. If she ends up crying then Amma cries and if she’s sad then Amma’s sad, She has to block things out, there’s no choice. She’s scared, really scared about how much time has gone on and she hasn’t had any treatment, no chemo and they haven’t completed the tests. Taking a biopsy is the most important and that’s not been done. Soley relying on these scans and she’s freaking out. But she just has to accept that this is what is happening. Trust the process guys. Darling Matt is at his brothers. She feels she struggles to be strong for both of them and she’ll fill him in when he comes back. She asks for help from the viewers to help her through this. We’re doing enough by being here(and being blocked). Disclaimer on screen - Matt is home and she feels like she’s in a better place. No mother should have to go through this. Tries the greasy, fried paneer roll.

Back home, struggling to climb up the stairs due to the pain. Amma gives her morphine. Feels like a nightmare.
BRAVO👏👏👏👏
 
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