TiffanyThinks #5

[Sheba]

https://www.pelicancancer.org/wp-content/uploads/deferral_of_surgery_study/pdf/Protocol.pdf

I'm not sure if this has been mentioned before or seen, but it's about the defferral of surgery from the Royal Marsden. It seems to be a Trial where they select patients on the criteria of being a partial or complete response after neo-adjvunt chemoradiotherapy(CRT). Especially long course radiotherapy(which to my understanding works for quite a few weeks after the initial CRT to downstage the tumour). Tiffany seems to fit the parameters of the people who are eligible for this trial when you look at the top of the flowchart. Why didn't she mention she had a partial response to the long course radiotherapy? The surgeon must have mentioned this to her so they can even consider this trial. As a part of entering his trial they also have to declare that there is a risk of the tumour spreading so that was done by the surgeon in the no surgery video.

This seems to be a way to downstage the tumour as much as they can so they preserve as many organs when it comes time to do the surgery. Surgery is still required if their is progression or no regression.

wow - the flow chart for this trial exactly follows her course it treatment - even explains the 8 weeks vs. 6 weeks thing as it has always been intended to be 8 weeks.

Interesting!y, this matches up with the study Mayo did on PE surgeries, people who were further out from their CRT did better than those who went straight into surgery.

I thought so too, but now seeing how she's acted after the no-surgery video... she's a liar and manipulator so maybe for the 'dramatisation' she's kept it from us on purpose. Each time she has mentioned to us 'I've been provided reassurance from my oncologist or team' etc she never says the specifics. It's making me think they give her good news but she wants to milk the confusion since it leads to more views, comments and money.

she's definitely storytelling. And it's not nice. I will say that when she said she'd wait 6weeks and to stop questioning her decision, I thought, "OK, I don't have to watch more of the same deal for 6 weeks, I'll come back when she knows something" LOL. I unsubscribed and downvoted a few videos go take them out of my suggestions until I was ready to look again. :-D

 

[Sheba]

Ok, so, if the appt is Friday, that means she may possibly tell the outcome Sunday?

 

[Wildflowerss]

I was just looking at Tiffany’s latest video “Cancer Examination and Biopsy (under general anesthetic)”, and I noticed she was wearing either her white fingernail polish, or maybe acrylic nails. But you are not supposed to wear nail polish, acrylic nails, makeup, or even deodorant to surgery. When she had her first surgery, she showed us that she was removing the polish from her right index finger so they they could still take her oxygen. This time she didn’t mention it. She had her nail polish on the whole time. The medical staff does not like that, because they need to see the color of your nail beds. I read that they can still do the surgery by finding another place to take oxygen readings from. But, they don’t prefer that you wear nail polish. It just struck me as odd. It sounds like a little thing, but it really isn’t! But I guess Tiffany didn’t think about it? Sometimes they won’t even operate if you have nail polish on. They can try to put the pulse oximeter on your toe or your ear lobe, but if that doesn’t work properly, they will remove the polish or acrylic nail from one finger. It is an important part of the procedure. I think it’s another example of how overwhelmed Tiffany must be this time.

I noticed that too and went back to the last round of biopsy and her getting ready to go under anesthesia and her nails were painted white then too.

 

[helpmeunderstand?]

What! Of course it does. Anyone outside the UK please ask questions but don’t jump to conclusions based on rubbish. The NHS is stretched but still offers an amazing service. We pay through our National insurance but it’s there even for those that dont. I for one am grateful to live in a country with a service like this. It has saved my life twice.

I didn’t research it myself, I just posted the question on her channel and they say the website said EMR /patient portal goes live i. March 2023. I should have posted my question here. How silly of me. Getting a grip right now and happy to hear that EMR is in practice at RM!

 

[Millieminion]

Hi, new here. In Tiffany’s last video she said there was a lot of blood, but she didn’t have any biopsy, so does anyone know why she would be bleeding so much? It would have been good if Tiff explained the reason(s) why.

Assuming it's because the surgeon did try to get to the tumor to biopsy it which meant having to rummage around (for want of a better term) thus causing the bleeding.

 

[Wildflowerss]

People don’t understand because she went from a 6-9 month life expectancy and need for the most barbaric surgery there is, which no one would even attempt bar one man - to suggesting she is NED after treatment they told her didn’t work.

That’s why no one understands.

yea this too lol

 

[PW212]

Clinical trial?????

Yes a research trial. They are also called clinical trials. Its not only the UK who have these watch and wait trials going on but also in the US. Mabe other countries too. They are trying to salvage more organs and especially the rectal sphincters while at the same time matching or improving survival rates. They are still inconclusive thus far so research trials continue. You need to meet the inclusion criteria for the trial and then you have to be FULLY informed about the protocols and timrlines etc. you have research nurses or coordinators working with you all along the way. Therefore, she knows entirely what the trial is about, why she qualifies, what it entails and her results along the way. These trials go through research and ethics boards before being approved so they must meet all of the necessary sign offs and credentialling before they can begin. She is definitely playing everyone.

 

[ladyt7087]

Things seem a bit tense... Maybe you all need some new merch to cheer you up??

Lol!!!

 

[Saydee]

are you kidding? lol
It's been beaten to death on these Tiffany threads. She has not had a partial or complete clinincal response to treatment as we saw her paperwork. People keep bringing it back up though, so here we are ...

I don't think many understand watch and wait?
Watch and wait usually always follows a partial or full (complete) response to treatment. If disease progresses, the patient comes of watch and wait and has surgery, radiation, starts a new line of treatment.
In 4 years my husband has been on 'watch and wait' 3 times. When the next scan has showed ACTIVE disease, he comes off watch and wait.
I see on tiffanys videos and on here that many don't appear to understand watch and wait and the reason it is part of standard care.

 

[MissB123]

Vomiting because of anesthetic / morphine/ sickness the days before and bleeding because they tried to access the tumor but there was too much scar tissues (or…?) blocking the way/ probably fresh scar tissues / adhesions from last (not completely healed) agressive biopsy. This time new surgeon didn’t want to take the risk to perfore anything / there was too much bleeding / he didn’t feel like cutting through like the « real » brave surgeon last time. But the fresh scar tissues and adhesions made it worst than last time so I don’t know … Maybe it’s either surgery or nothing / and waiting because biopsy is almost as risky as surgery it seems at this point …

Thank you for explaining. I appreciate it.

 

[Idrisrex]

The surgeon is NOT the person who will discuss the scan results. That’s not his job. Her scan results appointments will be with her oncologist or one of his team. It’s nothing to do with the surgeon.

You know that, I know that, but does our dear T. knows that? That is the one million dollar question.

 

[KineticAvetic]

Honestly, when looking through the comments most are very kind and then they are scolding her doctors for making this all so confusing. The others are just discussing and sharing their opinions on how confusing this all is. If she deletes all of these she'll have to get rid of quite alot of her enagagment which drives more views etc. This is why she can't treat her cancer journey like a normal youtube lifestyle channel.

 

[J3N1800]

Things seem a bit tense... Maybe you all need some new merch to cheer you up??

I want this

 

[Idrisrex]

So, at the end of the video she was sitting and waiting for approx. 30 minutes on the stairs?? That is the time the liquid morphine need to kick in. I’m speechless.

Morphine Sulfate Liquid (Roxanol®) | OncoLink

www.oncolink.org

 

[Jordbaer]

This one?

View attachment 1692186

Shoot her...

 

[whathastheworldcometo]

Anyone else suspect that there might not be a video forthcoming today?

Why do you think that?

 

[LeonorG]

Thank you to the person who posted about this thread on Tiffany's Instagram. I truly love Tiffany and have been so distressed and worried watching what has gone down. I personally believe she is a good person and I don't agree with some of the negative suggestions towards her and Amma. I really just think Tiffany is very naive and honestly believes (or wants to believe) God has healed her. Of course, none of it makes any sense at all, and it's left many of us pulling our hair in frustration.

What do you all think about the last PET scan coming back clear? That is the part that has me confused. Going by her symptoms, and her constant use of morphine, I do believe the primary tumor/cancer is still there.

The last PET scan has been discussed so much already. Have a look at the previous threads. You have a lot to catch up on.

 

[suzeq]

It's super weird he left her without any supervision first for 6 weeks, then it extends to 8/9 weeks
That's a lifetime in advanced cancer world.
I'm sure he is good and professional so I don't think is his ignorance.
What's the reason then?

I only know from reading some of the Watch & Wait LARC research that this is standard protocol, to redo all tests after 6 weeks. I don't know if that's why in Tiffany's case since we have not heard what the surgeon said her results were from the last tests beyond vague references (which remains the big mystery: if she qualified for WW and if yes, why). I can only offer that this is standard for WW. She did have bloodwork done early on in WW, but I don't think I've read any results. So, she might have been "monitored" in some fashion.

 

[KineticAvetic]

They didn’t say she had 6-9 months to live tho. They said she had 6-9 months till the tumour spreads and then it would be too late for surgery.

They said according to the surgeon... if she has no treatment she would only have 6-12 months before the cancer will spread and then she won't make it. So she has to have at least some sort of treatment and especially surgery for any chance of survival.

 

[oceanbaby]

He gave her the options, but.... with a warning that with the WW option the cancer could have spread. She has made the descision to take the gamble and wait and the dice seems not to have rolled in her favour.

Yes, I do remember him mentioning it could spread and become terminal if she waits, yet he still recommended it which surprised me. But if she indeed has no evidence of disease as was stated, maybe it makes sense. I really don't know. What I wish she would do is record in full the audio of their next meeting so we could hear exactly what is said, but I can't see it happening.