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Not sure I should be reading anymore posts here for awhile

Chris Ptown's picture
Chris Ptown
Posts: 92
Joined: Oct 2011

You guys are ALL so wonderful and I am glad I found you but I am driving myself crazy with worry again by reading a lot of the postings. I was nervous about the DPD enzyme test so I asked my doctors office today and she said they didn't do that test. I also asked why i didnt get a colonoscopy just cat and pet scans and havent heard back on that yet. My treatments start Monday and all I can think about is these and other things like low blood cells and being anemic. Maybe I should give the message boards a break for awhile and come back after treatment. I also have Type 2 Diabetes so going to see a nutritionist tomorrow to ask her what I should be eating. So much to take in as you all know. My mind just worries way too much.

Lorikat's picture
Lorikat
Posts: 548
Joined: Jul 2011

Chris, you chose your doctor because you trust him. I am also a worrier and I also expect the worse all the time, especially now. But guess what? I didn't get the worst.. I got a whole lot better.

Iwas trying to find a way to reassure you and found out things I didn't know. 1. Low white blood cells and slight anemia is normal and shows you're fighting your cancer. 2. I showed a low count on another blood panel, looked it up and found out it's because it is a natural tumor fighting blood cell.. Ii is low because it has been doing it's job. If it were high that is when you worry. 3. Radiation machines have improved so much in the last years that we do not burn AS badly as anal cancer patients used to. 4. Do not expect to get ALL the side effects talked about here.

If this increases your anxiety, by all means take a break! Biggest thing to remember? All of us here are ALIVE and well enough to converse with each other! We will be here when you ready"....... Lorie with hugs

Ps I did not have the dpd enzine test either an I was at MD ansderson in Houston..

Phoebesnow
Posts: 437
Joined: Apr 2011

KNOWLEDGE IS POWER!

That will never change. Power can be scary but Fear will hone your senses and make you more powerful. Being scared is not a negative. Being ignorant is a negative.

I would gather every question that you have, write it down and present it to your doctor today. E mail the list to him. you are the customer, if he treats you as an irritant, I would question that too. I know the doctors, techs will tell you to stay away from the blogs, blah, blah, blah. I almost made the mistake of listening to them, but they did not have any answers for me. Here in the archives I found many answers and solutions.

Chris this won't be easy and there are times that you may question, why did I do this, but one year from now, you will be so happy you did. life is not perfect Chris, but I am surfing every day, walking my dogs, riding my bike, having great sex with my husband and working. I am happier than I have ever been in my life and closer to God than you could ever imagine. I am so grateful to my very honorable and good Doctor and my wonderful and inspiring techs who were there for me every day.

Every day as I laid on that table during treatment, I would pray and pray and God would just carry my mind away. He carried me when I needed him the most, I will pray he will do the same for you.

Remember this door is always open.

You don't have to post Chris, but don't cut yourself off, when you are going to need us the most.

Chris Ptown's picture
Chris Ptown
Posts: 92
Joined: Oct 2011

thank you for your post and as i said in another post i thought i was getting ready to deal with all this but now not having a colonoscopy i keep thinking what if i have more cancer there? my sister says i am going to drive myself crazy always assuming the worst... i do wish i was stronger...women seemed to be so much stronger than men...its that way in my family and seems the case on here although all the guys i have talked to on here are equally strong...maybe its me that needs to grow a pair and stop being so scared and worried...knowledege is power i see but i cant shake the fear of finding out the knowledge... so frustrating and i hate to keep whining about it to all you good people

shirlann54
Posts: 161
Joined: Aug 2011

I understand what your saying i was like you .I wouldn'd get on any cancer support programs.Till i was done with my treatments. i was so scared.But when you get done with your treatments you will be strong like us .Because you did it and you made it . And you will make it thru this.I did good with my treatments my burns were not bad .I did better then i thought i did after reading what others went thru .I,ll be praying for ....Shirley

shirlann54
Posts: 161
Joined: Aug 2011

I understand what your saying i was like you .I wouldn'd get on any cancer support programs.Till i was done with my treatments. i was so scared.But when you get done with your treatments you will be strong like us .Because you did it and you made it . And you will make it thru this.I did good with my treatments my burns were not bad .I did better then i thought i did after reading what others went thru .I,ll be praying for ....Shirley

shirlann54
Posts: 161
Joined: Aug 2011

I understand what your saying i was like you .I wouldn'd get on any cancer support programs.Till i was done with my treatments. i was so scared.But when you get done with your treatments you will be strong like us .Because you did it and you made it . And you will make it thru this.I did good with my treatments my burns were not bad .I did better then i thought i did after reading what others went thru .I,ll be praying for ....Shirley

shirlann54
Posts: 161
Joined: Aug 2011

I understand what your saying i was like you .I wouldn'd get on any cancer support programs.Till i was done with my treatments. i was so scared.But when you get done with your treatments you will be strong like us .Because you did it and you made it . And you will make it thru this.I did good with my treatments my burns were not bad .I did better then i thought i did after reading what others went thru .I,ll be praying for ....Shirley

shirlann54
Posts: 161
Joined: Aug 2011

I understand what your saying i was like you .I wouldn'd get on any cancer support programs.Till i was done with my treatments. i was so scared.But when you get done with your treatments you will be strong like us .Because you did it and you made it . And you will make it thru this.I did good with my treatments my burns were not bad .I did better then i thought i did after reading what others went thru .I,ll be praying for ....Shirley

Chris Ptown's picture
Chris Ptown
Posts: 92
Joined: Oct 2011

thank you Lorie for telling me about those things you found out I really appreciate it...i guess now i am just worried about getting a colonoscopy

mp327's picture
mp327
Posts: 2666
Joined: Jan 2010

I did not have the DPD enzyme test before my treatment either and neither chemo drug caused me any problems, other than the usual side effects. As for a colonoscopy, at some point in the future, you will definitely want to have one done. But keep in mind that a colonoscopy is primarily for viewing the rectum and colon, which are beyond the tumor area. Any cancers in those are a different type, so your anal cancer is not going to be found in either the rectum or colon.

I've been talking about anal cancer for almost 3 1/2 years now and I know what it's like to need a break from it. So, if you have to do that, then by all means that's what you should do. Information overload can be a problem sometimes, causing undue worry and stress. However, we are all here and living our lives pretty normally and we want the very same for you. Your treatment will work--it will. Please rejoin us when you are ready. As always, I wish you the very best.

Chris Ptown's picture
Chris Ptown
Posts: 92
Joined: Oct 2011

thats why now i am worried about cancer in the colon etc...i thought the PET scan covered everything but now i have to worry about the colonoscopy... i left a message with my doctor about a colonoscopy and he will get back to me tomorrow...not sure if they will give me one between now and when i start monday...thanks for your help mp327 i appreciate it

azgal
Posts: 31
Joined: Oct 2011

Hoping you do whatever is best for your peace of mind at this moment. The realization that we are actually the ones in control of our care and have choices to make, so that we receive the best care we possibly can, is a responsibility that each of us either embraces or doesn't, keeping in mind that what can be TMI for us one day can be empowering to us on another day. There's certain tests that are typically recommended before treatment starts like PT/CT/MRI/bloodwork/chestXray/ultrasound/colonoscopy, etc. Fairly standard stuff. Most of us did not have the enzyme test because we were not offered it, nor even aware that it existed. You were afraid of possible effects of chemo and that's why I mentioned the available enzyme test, as a tool that could help you alleviate some of the fear (empower you). Focusing on prep to start treatment is a good place to focus. There's plenty of time to be sure they address any questions to your satisfaction...my Tx start-date was pushed back by them several times so they could complete tests they wanted me to have. Wishing you some calm in all this and I hope the ativan helps.

Phoebesnow
Posts: 437
Joined: Apr 2011

I never heard or read anything about this test until u mentioned it. I learned something new from you already. This is an example how we all have something to offer here.

No matter how much you whine or how scared u r, I am happy to be here for you.

Chris Ptown's picture
Chris Ptown
Posts: 92
Joined: Oct 2011

thanks

hugs!

azgal
Posts: 31
Joined: Oct 2011

I posted a new thread on it here for anybody interested: http://csn.cancer.org/node/229975
I, too, am so very grateful for everything that group members share. :)

Chris Ptown's picture
Chris Ptown
Posts: 92
Joined: Oct 2011

thanks! i meet with a nutritionist tomorrow and will ask Dr Soto about a colonoscopy...i appreciate all your help so much..and everyone else's too

azgal
Posts: 31
Joined: Oct 2011

You're welcome! 4+ years ago when I was diagnosed, the yahoo anal-cancer board members literally gave me info that saved my life, and held my hand through everything I had to fight for. It was exhausting and I would have been lost without the support of others and I am forever grateful to them. Glad you're seeing the nutritionist tomorrow.
Big hugs XO

eihtak
Posts: 784
Joined: Oct 2011

Hi Chris, It is so hard to turn off worry once its there, but shut your tired eyes and take a deep breath, if your not a spiritual person its ok....you are on my prayer list anyhow....and if you are you are in the best possible hands. In Jan. 2011 I was diagnosed with Stage 3 Anal Cancer. I had no enzyme test, no colonoscopy, and probabally a couple others. We are kind of at the mercy of our docs and have little time to research when this hits. I soon started chemo. and radiation and yes it was tough (mostly I had problems eating). The radiation burns were bad but I had a colostomy bag put in before treatment and this actually made me more comfortable in the whole sensitive area. (Some have them some dont) Its not really that bad now that Im used to it and dont know if it can be reversed yet or not. I am waiting for a C Scan and possible Pet Scan to determine if I need surgery now to remove any remaining tumor or if there is anything new. I worry also, but try to not let it take over....my husband is fighting for his life right now and will receive a bone marrow transplant next month and I plan to be healthy for him. I have 5 children, 5 grandchildren and they all keep my mind occupied on happier things. There is an amazing strength that comes from this journey and you will find that in some ways you will love the person you become more than the person you were. It seems weird but sometimes I feel like I now look at life from a whole different angle than before and thats why its so important to stay in touch with others who can see things the same. Rest is important and thats where Im headed now, as should you. Things have a way of working out, you will see.

shirlann54
Posts: 161
Joined: Aug 2011

If you had cancer any were eles the pet scan would have showed it .I dont think you will have to have a colonoscopy because you had that surgery...Shirley

mxperry220
Posts: 336
Joined: Mar 2011

Chris,
I did not have a DPD test. You should follow your doctors advice and trust them. You will be fine once you start treatments. They probably did not do a colonoscopy because they surgically removed your tumors. I had a colonoscopy because they did not know what my issue was and then found my tumor.

Also,The PET scan would have identified any potential cancer cells in your colon during the scan process.
Mike

RoseC's picture
RoseC
Posts: 484
Joined: Jun 2011

You'll be okay - really. You REALLY REALLY REALLY will be okay. Trust in that and forget about the rest for now. Lie down in peace, take a nap, and try to stop your mind from whirling. You will be okay. I promise.

lizdeli's picture
lizdeli
Posts: 517
Joined: Jul 2009

Chris
This is all very overwhelming. Do what you need to do to help you deal with this. When I was first diagnosed the doctors gave me Ativan to calm me down. I needed it, I was a wreck. It helped me cope.

I also did not have any terrible effects from the chemo. And the radiation wasn't too bad until the last two weeks. Everyone is different. One day at a time. It's important to take care of your body and your mind through this.

Hugs,
Liz

Angela_K
Posts: 370
Joined: Jan 2011

you have to not overwhelm yourself. I didn't read or participate on this board until after my treatment ended for that very reason. I trusted my doctors, I trusted my God and I trusted my own instincts and made it through treatment beautifully. I made it a point to focus on all things good and healing.

Take a break if you need to. We'll be here when you're ready, on your terms.

Blessings,

Angela

sephie's picture
sephie
Posts: 501
Joined: Apr 2009

chris, I was treated at MD Anderson. i did NOT have a colonoscopy before the tx. they did a pet scan and a cat scan before tx. ( i had a biopsy done at another hospital on what i though was a hemmy and that is how they found the cancer). i did not have the Dpd enzyme test either. my oncologist did lower the dosage of 5fu on my 2nd dose. i asked him not to lower it but he said that my body would not take it and the lower dose would be enough. so it is a lot of info, just work with what you have and you can do it. hugs sephie

sandysp's picture
sandysp
Posts: 699
Joined: May 2011

I think you are one heck of a guy to share your feelings so openly. This actually tells me you are going to be just fine. The nutritionist is a really good idea. Mine gave me surprising advice - like don't eat leafy green vegetables or drink green tea or herbs while on the radiation. I love vegetables and green tea too but I did what she said because evidently, according to their studies the radiation is more effective if we don't do these things during the treatment. She wanted me to eat lean protein and starchy veggies and and other foods. She said drink lots of protein milk shakes which really tasted good to me. I lost just the amount of weight I wanted to lose and no more. I added food groups back carefully, one at a time and I think this is why I didn't have any accidents.
All the best,
Sandy

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