SWF, so many uncertainties NOW!!!!

[Eleda]

Jesus that was a, shock to wake up to!!! Anne
Prep is easy, for me on this theres none
Ware my own clothes, pull them down below the tattoos and lie there,,,
Again must be different machines
I asked about the back and they said the machine will move around so it will do all 4 spots,
My first nurse said bladder full for exactly why u stated
And second said empty, for simulation so empty for treatment????? ( weird)
In fact I've some kind da UTI AGAIN ATM, possibly a gyney issue that I may need seeing to before radiation gets worse
I'll be menopausal after it so going to ask to have my reproductive organs removed also
Just wasn't sure, if they can do it all together ( trauma to the body) or if u need a separate gyney ( prob)
My tailbone hurts at my from the tumor
Can't sit for too long ( not used to it either)
I'm usually stand for 16 hours a day

Thanks for ur reply
Is the aquaphore for ur bum???
Can I lash on creams before treatment???
And lastly can I use a tampon???
Have my probast period ATM
Thank Adele

[Eleda]

Hi Basil
Thanks for ur reply,
No I'm not for a second avoid surgery, it's, not an option TBH, I'm just nervous of all the radiation damage to them still be left with a bag at the end, eg menopause bladder skin etc
My surgeon is confident he can reconnect afterwards as long as it shrink with the radiation and chemo first
If not, that's a different story
And ATM in doing an ostrich on that one lol
And yes, the M0 WAS THE MAIN POSITIVE ON THAT ONE!!!!!!!!

[BethD]

Hi Adele
Its nice to meet you but I am sorry for the reason you are here.
I was diagnosed in Feb 2017. My tumor is 2 cm from the anal verge.
I did my chemo over the summer and radiation in Oct & Nov 2017 and now heading in for surgery in Jan 2018.

I was able to walk to and from my radiation appointment every day. I didn't experience my skin breaking down until the week -10 days after treatment ended. I took the oral chemo morning and evening on the days of radiation. You don't want anything on your skin when you go in for treatment, but I found the Aquaphor and coconut oil to be helpful, and frequent baths/sitz baths. I made little coconut oil bolus to put in the freezer which seemed to help.
My radiation team was great. I was given a dilator to insert each treatment to help direct the radiation away from my vagina.
I had diarrhea and bowel urgency during the radiation and wish I had realized that I could have helped myself by going on blander diet.

talk to you soon
Beth

[Eleda]

Can I also ask why ur surgeon chooses illistomy over colostomy????? What's the reason for choosing one over the others, of imagine an illistomy is much harder to manage
Thanks

[NHMike]

Absolutely Mike but it's near impossible to not worry and the more I Reaserch, the more it worries me lol
Viscous circle, I just hate not having control over this situation,.
My youngest son has cystic fibrosis, so I'm used to treatments, watching trials and reserching Intergrative meds etc!!!!!
So it's like second nature
I rang the Irish cancer Society to ask if its standard procedure and they said only in matasasis, ( makes no sence whatsoever)
But my oncology nurse said all are tested, weather it has Matastasised or not,,,,
What's the point in giving someone one type chemo that's not going to benefit them and wait until it's got worse to check????

Now Because I also have a second polyp, 15cm away from the first, I'm thinking maybe it's Lynch because other's on here don't seem to have any other polyps only the one cancerous one

Sorry for all the question,,,
I'm probably driving u mad
Thanks Adele

I think that genomic tumor tests should be standard care for Stage III patients so that you can rule out aggressive mutations and things like Lynch. I think that it costs about $1,000 and it will tell you what your mutation is if it's a standard mutation. The other approach is to do individual tests to tell you whether or not you have something. But it just tests one or two things at a time and I have to think they add up. Better to test 175 mutations all in on shot.

I have a coworker that went to Dana Farber Cancer Institute with lung cancer and I'm sure that they did the genomic testing right away. He would have been dead over a year ago without it. The genomic testing determined that they had a drug to shrink the tumor but it would likely only work for a year and then mutate. And he took the drug, the tumor shrank and stabilized and then mutated. They did genomic testing again, determined that they had a drug for the mutation as well and he's still alive and the tumor is stable. I think that there are more drug options (they are more targeted than traditional chemo) with Lung Cancer these days if you have common mutations.

My son's manager offered to do the testing for me and that's how I know my tumor gene mutation.

I assumed that you were enjoying yourself in Spain right now.I certainly hope that it isn't as cold there as it is here. Last I checked, it was six degrees (F) here. One thing that might help with the worry and anxiety is if you can enjoy life or get engrossed in something. A good friend told me that most people are stressed out by work but I'm more stressed out by not working. Working can take your mind off the bad stuff.

After my first colonoscopy to biopsy the tumor, the GI doctor wanted a second one with proper prep to see if there were any more polyps. He found one and removed it. So I'm 58, had two polyps in my life and one was cancerous. I've heard from others that they sometimes get a few with each colonoscopy. A few people have told me that eating clean can drop the number to zero. I suppose that can be challenging with a couple of small kids - everything is challenging with a couple of small kids.

The standard of care in the US is to check for Microsatellite Stable or Instability (MSS or MSI). MSI is an indicator for Lynch. The MSS/MSI test is done with Immunohistochemistry and it's a blood test rather than a test on the tumor biopsy so it might cost a lot less. I got the information off one of my lab results.

I know that it's impossible not to worry - I worry too but sometimes the busyness of life pushes the worry aside. My wife worries a lot too. Cancer can be stressful for a lot of people in your life.

[NHMike]

Can I also ask why ur surgeon chooses illistomy over colostomy????? What's the reason for choosing one over the others, of imagine an illistomy is much harder to manage
Thanks

My surgeon told me that she would make the choice during surgery - either a permanent colostomy or a temporary illeostomy and later reversal. So it seems to me that it's a matter of what will happen down the road. If you are going to have a bag for the rest of your life, then you're better off processing food in the small and large intestine than the small intestine alone. I don't know how easy or hard a colostomy is but a lot of people seem to want to avoid them. I've heard of people with a lot of problems with an illeostomy reversal too - I think that it takes a while to learn to manage it for some.

[Eleda]

Thanks, Mike
I think he's thinking colostomy as he was checking my left side,,,
I'm going to ask to see my file tomorrow when I'm not
It's like the holy grail,,, they hate parting with it lol
I'll just take photos, Like I do with my sons lol
Work for me is a total stress
So has, my past 6 years with my separation/divorce and my sons Dx, and self employed on top,,,
Im overweight and yoyo diet, prob drink more, wine than I should also and sleep very little,,,,
None of this is aiding a healthy lifestyle.
But if course that's, all gonna change now
I'm also looking into starting high dose liposomal v c after my 5.5 weeks when I'm on my break before surgery,,,
I already give it to my son (don't know enough about the iv in my area to get that done)
I'm home now just spent an uncomfortable 7 sitting on my ass to get home to a storm 4 degrees
I left 23 degrees lol that's my VIt D sorted for a while lol

[NHMike]

I don’t know if the surgeon really knows until they find out how much shrinkage there is. My tumor popped out a few times but I had 90% shrinkage. My surgeon, after seeing the MRI, said that I have a 10% chance of a permanent colostomy.

[Eleda]

Oh I know Mike
I won't actually know until about 6/10 weeks after radiation finishes,,,
That will b a long night before meeting the surgeon,,,
Probably do a DRE, and he should pretty much know from that, with the MRI to confirm,
But still depends on the actual day of surgery, as I'm also aware it's a difficult one to perform ( he's said that already)
But I'm sill hopfull, it will all go to my plan lol
And not the person holding my voodoo doll

[NHMike]

Oh I know Mike
I won't actually know until about 6/10 weeks after radiation finishes,,,
That will b a long night before meeting the surgeon,,,
Probably do a DRE, and he should pretty much know from that, with the MRI to confirm,
But still depends on the actual day of surgery, as I'm also aware it's a difficult one to perform ( he's said that already)
But I'm sill hopfull, it will all go to my plan lol
And not the person holding my voodoo doll

You might know earlier.

The tumor inside me as rather painful and I had this fear that I would have a blockage as it kept growing the first week of chemo and radiation. But, I could see pieces of the tumor coming out in a regular basis and it eventually got a lot easier to go. That is my constipation problems declined. Ten days after the end, I felt back to normal. The MRI only confirmed that there was very little blockage left. Hopefully you can enjoy that little break befor surgery. We took some time off for traveling there.

[Eleda]

Might take my kids, on holiday when I get a timeframe,
Someone said don't book anything far ahead as if u have to cancel the disappointment is, worse so I'll hold off booking anything yet,,, already had to cancel 2 holiday
Jan and feb
Can I ask was the aquaphor for ur skin or bum or both,,, ordered it today!!!
One day down and so far so good
But I don't expect that to last lol
I'd never be that lucky ( I suck stactically lol)
Just very thirsty ( weird as I don't Usually drink a whole lot)
Gona start a diary too maybe for diet etc afterwards it may help
Thanks Adele

[NHMike]

Might take my kids, on holiday when I get a timeframe,
Someone said don't book anything far ahead as if u have to cancel the disappointment is, worse so I'll hold off booking anything yet,,, already had to cancel 2 holiday
Jan and feb
Can I ask was the aquaphor for ur skin or bum or both,,, ordered it today!!!
One day down and so far so good
But I don't expect that to last lol
I'd never be that lucky ( I suck stactically lol)
Just very thirsty ( weird as I don't Usually drink a whole lot)
Gona start a diary too maybe for diet etc afterwards it may help
Thanks Adele

The time between chemo/rad and surgery and the time between surgery and Adjuvant Chemo (after you recover) may be a good time for a break. If you're on CapeOx (Xeloda + Oxaliplating), the third week of the cycle may be a good time to take off.

I use iCloud Notes for my diaries and I have a bunch of them related to health, fitness and cancer.

[Aqx99]

Jesus that was a, shock to wake up to!!! Anne
Prep is easy, for me on this theres none
Ware my own clothes, pull them down below the tattoos and lie there,,,
Again must be different machines
I asked about the back and they said the machine will move around so it will do all 4 spots,
My first nurse said bladder full for exactly why u stated
And second said empty, for simulation so empty for treatment????? ( weird)
In fact I've some kind da UTI AGAIN ATM, possibly a gyney issue that I may need seeing to before radiation gets worse
I'll be menopausal after it so going to ask to have my reproductive organs removed also
Just wasn't sure, if they can do it all together ( trauma to the body) or if u need a separate gyney ( prob)
My tailbone hurts at my from the tumor
Can't sit for too long ( not used to it either)
I'm usually stand for 16 hours a day

Thanks for ur reply
Is the aquaphore for ur bum???
Can I lash on creams before treatment???
And lastly can I use a tampon???
Have my probast period ATM
Thank Adele

Yes, the Aquaphor is for your butt. I slathered it on every bathroom visit, whether or not I had a bowel movement. You should not have any creams or ointments on at the time of treatment. I brought a small tube with me to apply after treatment. Nobody said anything to me about tampons, so you might want to ask about that one. For sitting, my ostomy nurse suggested a memory foam cushion. It has helped me a lot.

[macpudd]

Hi Adele,
Sorry you find yourself here, but it is a great resource for information, support and venting to people who get why you might need to vent. I am also from Ireland, had all my treatment in Drogheda, and am three years from diagnoses and still NED. Spent new years day in A+E and told I have diverticulitis. I also attend my local cancer support center, I would recommend that you do to if there is one available to you, as it has been a good support to me. Hope your treatment goes well, feel free to pm me if there is anything I can help you with, although you come across in your posts as being a very self sufficient person, in times like this we all need a bit of help.
Regards
Macpudd

[Eleda]

Thanks Beth, I posted a reply but in the wrong place
I'll rectify it later
Same as I replied to u Mac lol I'm technology retarded sorry lol
NHMike, I tried to send u a message and I dump what I've done

Mike I've been reading up on the MSS MSI KRAS AND BRAF, TO THE POINT I'M TOTALLY CONFUSED NOW, as its adding combinations of mutations with different outcome,,,
Would u mind breaking down the main mutations and prognosis or likely treatment for the main types that I can expect to come back from hispatology

This was the last one u read and and I've a banging headace as it is from the Zelda


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269820/