Terrified new member from UK...joined today.

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catdylan1
Posts: 1
Joined: Mon May 13, 2019 10:39 am

Terrified new member from UK...joined today.

Postby catdylan1 » Mon May 13, 2019 11:05 am

Hello...I've been a guest here for the past few weeks & am amazed at all the brave posts/ stories I have read thus far.
I have joined today...simply because I cannot deny anymore.
Although I presented with abnormal bowel symptoms in June '18.....& went through several blood/ poo tests, UV & CT Scans....all were very normal. By Oct '18...my poo was also very normal & all I've had since then is a dull toothache like discomfort in my lower left abdomen....which I've now got used to.
Things have speedily moved on since then. For the past month, I had a CT Colonography - which showed up 'something' on my descending bowel....followed by a Colonoscopy on 15/4, which showed up same mass. The Endoscopist couldn't get through further...due to narrowing. He noticed 'abnormal tissue,' took bioscopy....which showed nothing - However, He stated it was 'a grey area.' & only way it can be ascertained is through a 'Left Hemicolectomy' which I am due on 16/ May. Removing most of my descending colon & part of my sigmoid.

Since then, I have been living in an alien world. Yes, I'm old at 69 years, but feel biologically young. The only way that I am coping with this is through my bottle of Sauvignon per night & my constant supply of roll-ups - plus watching lots of good Box Sets/ I Player.....to include 'Deadwood.' right now.

Cheers, just saying hello. x

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Terrified new member from UK...joined today.

Postby LPL » Mon May 13, 2019 3:24 pm

catdylan1 wrote:Hello...I've been a guest here for the past few weeks & am amazed at all the brave posts/ stories I have read thus far.
I have joined today...simply because I cannot deny anymore.
Although I presented with abnormal bowel symptoms in June '18.....& went through several blood/ poo tests, UV & CT Scans....all were very normal. By Oct '18...my poo was also very normal & all I've had since then is a dull toothache like discomfort in my lower left abdomen....which I've now got used to.
Things have speedily moved on since then. For the past month, I had a CT Colonography - which showed up 'something' on my descending bowel....followed by a Colonoscopy on 15/4, which showed up same mass. The Endoscopist couldn't get through further...due to narrowing. He noticed 'abnormal tissue,' took bioscopy....which showed nothing - However, He stated it was 'a grey area.' & only way it can be ascertained is through a 'Left Hemicolectomy' which I am due on 16/ May. Removing most of my descending colon & part of my sigmoid.

Since then, I have been living in an alien world. Yes, I'm old at 69 years, but feel biologically young. The only way that I am coping with this is through my bottle of Sauvignon per night & my constant supply of roll-ups - plus watching lots of good Box Sets/ I Player.....to include 'Deadwood.' right now.

Cheers, just saying hello. x

Welcome catdylan1, Waiting to get answers is the worst.. You are doing what you can to fill the time.. My fingers are crossed for a good outcome for you on May 16. Stay on this forum and share your result and members here can help with advice/share their experience.
All the best to you!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

kiwiinoz
Posts: 1125
Joined: Thu Jan 03, 2013 11:44 pm

Re: Terrified new member from UK...joined today.

Postby kiwiinoz » Mon May 13, 2019 6:13 pm

I hope that is New Zealand or WA Sauvignon Blanc?
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

WarriorSpouse
Posts: 194
Joined: Tue Aug 16, 2016 9:02 pm

Re: Terrified new member from UK...joined today.

Postby WarriorSpouse » Tue May 14, 2019 11:21 am

Best wishes moving forward. We are here for you when questions come up along the way.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

Re: Terrified new member from UK...joined today.

Postby rp1954 » Tue May 14, 2019 11:53 am

We did not have good enough blood data from the day of diagnosis. We demanded more blood data the day or night before both surgeries, our last chance. You might also read Life Extension Foundation's articles on colorectal cancer asap.

Done better, minimal "extra" blood data like CA199, LDH, ESR, hsCRP at least, can be very cheap, and were very important later. There is a lot more more blood and tissue data that can be gotten and used, discussed here, that some other doctors can interpret informatively. Or you can compare here. Extra data has often been critically useful for us. It has been easiet to order extra blood data ourselves, because of balky medical staff not so fully informed, and to avoid unnecessary stress with some doctors. The early blood and tissue data that was missing limited and slowed our inquiries and literature quests later, as well as our (successful) efforts for better treatment based on global efforts elsewhere.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Pyro70
Posts: 135
Joined: Mon Jan 21, 2019 4:25 pm

Re: Terrified new member from UK...joined today.

Postby Pyro70 » Wed May 15, 2019 10:34 am

Catdylan1

Sounds like you are stressed enough. Please don’t let RP1954 create more stress/anxiety. Your doctors know what they are doing, listen to them. RP isn’t a doctor and his medical advice is not accepted by any national cancer guidelines. Don’t believe everything you read on the internet. There is some good advice on here, but not all of it is legitimate.

Good luck.

Cheers
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

Re: Terrified new member from UK...joined today.

Postby rp1954 » Wed May 15, 2019 4:51 pm

To get more complete data, outside opinions, additional views and opportunities has been a godsend for us, and many members. Many members here would be dead if they had not gone far beyond average care or "standard medicine". Knowledge is power, where one must choose wisely, despite many claims and supposed authorities.

Yes, we did mix regular medicine(s) with mild off-label medicines, natural medicine, foreign practices and US opinions, with published science papers and top tier doctors, very carefully and successfully. We examined each option available, and then chose or added accordingly. Sometimes we queried 6-7 doctors, on one kind of option at a point in time, then went other ways. We definitely dodged a lot of bullets, ignorance and (medical) mistakes. With more and better options, our anxieties receded with knowledge, self empowerment, extra comforts, high quality of life, and affordable costs, along outstanding, measurable, demonstrable results on a regular basis (e.g. 2-3-4 weeks) instead of scan anxieties.

We could not have achieved these the "regular way", at least in 2010-12; no doctor consulted ever says that. In fact, even now we have to be careful giving my wife's history, some doctors start shutting down, "I'm sorry..." [I can't help you] before one of us even finishes to discuss our business.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

margiej
Posts: 85
Joined: Sat Apr 14, 2018 8:46 am

Re: Terrified new member from UK...joined today.

Postby margiej » Wed May 15, 2019 5:59 pm

Best of luck tomorrow, catdylan1. Sending all the healing vibes.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

FightCRC
Posts: 37
Joined: Fri May 25, 2018 10:39 pm

Re: Terrified new member from UK...joined today.

Postby FightCRC » Wed May 15, 2019 6:41 pm

Pyro70 wrote:Catdylan1

Sounds like you are stressed enough. Please don’t let RP1954 create more stress/anxiety. Your doctors know what they are doing, listen to them. RP isn’t a doctor and his medical advice is not accepted by any national cancer guidelines. Don’t believe everything you read on the internet. There is some good advice on here, but not all of it is legitimate.

Good luck.

Cheers


A counterpoint for Catdylan1: There is much to research and it can be overwhelming. What RP has accomplished with his wife is going to be beyond the vast majority of patients/caregivers, even those who are motivated enough to be here regularly. But it is compelling stuff and worth looking into, to the extent that you're able.

I will also say that doctors only know what they know. It may be that your doctors know all, but odds are, they don't. I have seen too many instances where doctors only know what their hospitals can provide and/or can only help you to the extent of their hospital's capability. This is what happened to us: Our first onc was a mechanic, when Stage IV requires an artist. We learned about our second onc thanks in large part to this message board. She's absolutely amazing; and yet, also has her limitations. It's sadly incumbent upon patients/caregivers to be aware of their situation, and all available treatment options. I wish you the best.

Pyro70
Posts: 135
Joined: Mon Jan 21, 2019 4:25 pm

Re: Terrified new member from UK...joined today.

Postby Pyro70 » Wed May 15, 2019 9:48 pm

FightCRC wrote:. It's sadly incumbent upon patients/caregivers to be aware of their situation, and all available [EVIDENCE BASED] treatment options. I wish you the best.


There I fixed/clarified it (in bold).

A good place to start with understanding treatment options are: NCCN guidelines, up-to-date, and onclive.com.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

FightCRC
Posts: 37
Joined: Fri May 25, 2018 10:39 pm

Re: Terrified new member from UK...joined today.

Postby FightCRC » Thu May 16, 2019 12:30 am

Pyro70 wrote:
FightCRC wrote:. It's sadly incumbent upon patients/caregivers to be aware of their situation, and all available [EVIDENCE BASED] treatment options. I wish you the best.


There I fixed/clarified it (in bold).

A good place to start with understanding treatment options are: NCCN guidelines, up-to-date, and onclive.com.


To a degree, yes. But what's the medical establishment's view on medicinal cannabis, for example? Both of our oncologists knew/know very little about it, and as a result, discouraged its use.

To be clear, I'm agnostic (at best) on any alleged curative properties. But it's been crucial in helping us manage side effects, which in turn, allows us to better tolerate conventional treatment.

I have to say, I've received much more practical knowledge and advice from fellow patients/caregivers, than from doctors. "Listen to your doctors" as a general principle? Eh...depends. As an absolute? Well, if we listened to our first onc, we very well might not still be here. If you're a passive patient, then follow the path of least resistance and listen to your doctors, always. IMO, however, a patient simply cannot afford to be passive, especially at Stage IV. Research, research, research. Best of luck to all of us.

stu
Posts: 1163
Joined: Sat Aug 17, 2013 5:46 pm

Re: Terrified new member from UK...joined today.

Postby stu » Thu May 16, 2019 3:50 am

Hi ,

I like the NZ variety myself . :D

One thing to remember in the UK we do have a different relationship with health care providers and taking it one step at a time is a great plan .

We have very highly trained surgeons who largely follow the NICE guidelines for protocol . You can google them and have a look at the treatment pathway for each stage . We are a bit more conservative with the use of chemotherapy and it is strictly research lead with a bit of personal interpretation from individual oncologist for stage 4 patients especially. Stage 1 to 3 is governed by current practice and research. Every big clinical decision goes through the MDT team .

Bowel cancer UK has a lot of online information booklets from diagnosis to discharge as does Macmillan and can be sent to you . You will also get a special nurse who will support you through the process .Bowel cancer UK information leaflets have excellent photographs and makes everything clear .

Given our practices are resource governed most are only sanctioned by NICE committees and it is probably very hard to get an oncologist onboard with some of what is spoken about here . What I have found they are cautious whilst in treatment by once you are off treatment you are freer to investigate life style changes . But it is the public purse and that is factored in .

I can’t praise the NHS highly enough . My mum’s experience has been deeply humbling.

So in my mum’s word “ Best foot forwards “ and every success with your surgery .

Take care,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

DarknessEmbraced
Posts: 3308
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Terrified new member from UK...joined today.

Postby DarknessEmbraced » Sun May 26, 2019 10:13 am

I hope your surgery went well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18


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