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Diagnosed yesterday

tercure
Posts: 14
Joined: Dec 2013

Hello Everyone,

My name is Thom and I was diagnosed yesterday per results of biopsy.  I next will get CT scan and port placed.  I am scared.  Looking forward to the support and advice here.  Please feel free to contact me. 

tercure
Posts: 14
Joined: Dec 2013

Can someone please help me launch the chat feature?

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I am so sorry that you have had a reason to find this site.  Getting this diagnosis at any time of the year is upsetting, but I just can't imagine getting told around the holidays.  It can, indeed, be scary, but there are so many people here who will become your virtual support team.  And since we've been there, done that, our advice and information is based on personal experience.  The treatment for anal cancer can be rough, but it's only for 6 weeks, and most people come through it with side effects that are only temporary and subside with a little time.  You, too, will get through it!  I am a 5-year survivor and life is good for me.  I wish you all the best and hope you will let us help you through this--we are here for you! 

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry about your diagnosis and I understand your fear. In. Many ways, the fear is worse than the treatment. This cancer is curable with a short treatment. It is no day at the beach, but it is so doable! Really, it isn't as bad as you might imagine.

They will stage you and plan the treatment. I hope you are at a very reputable cancer hospital. That is step one. Don't be afraid to get a second opinion.

Take one day at a time. For now, eat very well, sleep , and take good care of yourself. There are lots of things you should have once treatment starts and you will get lots of great tips here.

I have never used the chat feature, sorry.

Hang in there! All will be well! Soon, this will be a thing of the past!

eihtak
Posts: 849
Joined: Oct 2011

Hi Thom, and as Martha said, I too am sorry you have the need to find us but glad we are here for each other. I did not find this place until I was finished with treatment and sure wish I had had the helpful advice from others who had been through this while I was going through it. We are all different and some face challenges that others don't, but no question is off limits, so please ask as they arise as surely someone will have some answers. I also was scared, but remember feeling better once things got started. The port, tests, appointment schedule,......it made me feel like I had some sense of control.

As far as the chat function goes, I had problems a while back and have not tried since. Hopefully someone else will chime in.

Next month I will be 3 years post treatment, and doing just great. I feel better than I have in a long time, even before being diagnosed. I will keep you in my thoughts and prayers for whatever you need to face this challenge.

 

 

tercure
Posts: 14
Joined: Dec 2013

Thanks so much each of you for your kind words and support.  It has been difficult to learn of this illness at this time.  I already am feelinng the warmth of others who have experienced this and want the best for me. I can't wait until I too am able to turn around and offer support to newbies when I am done with treatment.  I am applying moisturizers to the pelvic area daily after bath to prepare for the radiation.  I intend to get a hand held shower to use after BM's.  I also want to have the Domboro soaks ready.  I like the plastic spray bottle in the fridge idea also.  I am thinking about putting a bedside commode next to bed, so I will not have so far to go.  I also want to get waterproof pads for bed.  Does anyone know how long the wait is after the port is inserted before it can be used?  I have two books "The Chemotherapy Survival Guide" (McKay Schacher) and "Chemotherapy & Radiation For Dummies" (Lyss Fagundes Corrigan).  Love hearing your tips and advice!

mxperry220
Posts: 360
Joined: Mar 2011

The port can be used immediately.  Make certain they flush the port weekly to avoid any blood clots.  I had no issues with the port.  They removed it about two months after my last radiation treatment.  You may want to get something like Ensure to make certain you get your daily minerals and viatmins.  I was limited what I ate during treatment.  I would suggest you have Immodium on hand.  The radiation gave me diarrhea and Immodium helped.  Many of us have had diarrhea particularily during and post treatment.  Also Aquaphor was a huge help during this time.  This ointment worked better thanany of the prescrition ointment.  Make certain to have now ointment on during your actual radiation treatment.  Make certain to drink plenty of fluids.  I know this seems odd but about the only foods I liked were toasted cheese sanwiches on white bread, dill pickles and vanilla ice cream.  I will be 5 years post treatment january 14, 2014.  I was Stage 2.

Mike

Marynb
Posts: 1134
Joined: Aug 2012

I would go easy on the lotions once you start radiation treatment. It appears that any residue of lotion makes the burns far worse. I kept the area dry during treatment and I did not suffer severe burns like others have. The handheld shower will give you good relief. Make sure you have plenty of soft, loose fitting pants to wear. Sweat pants might be best.

As far as the chemo goes, I did not experience nausea or hair loss. The doctors will keep an eye on your blood counts. Not much to do about the chemo. Just drink plenty of fresh water.

Try not to worry too much.

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I also referred to "The Chemotherapy Sirvival Guide" during treatment and there are lots of good tips in there.  As for use of the port, it can be used immediately after insertion.  Many people will get their port put in in the morning and begin chemo a few hours later.  One tip that hasn't been mentioned here is getting lots of protein in your diet.  Try to get some with every meal and snack.  It promotes healing.  Pain meds can constipate, but I would not let that stop me from taking them as needed.  Just be sure to have Miralax and stool softeners on hand.  You can do this, really you can, and we are here to help you!

tercure
Posts: 14
Joined: Dec 2013

Any suggestions on protein source?

 

Marynb
Posts: 1134
Joined: Aug 2012

Thom,

I ate eggs, custards, greek yogurt, baked chicken, peanut butter. Smoothies with greek yogurt, fruit, and a tbspn peanut butter are good. I ate baked custards also. Whatever you can tolerate as treatment progresses. Soups with chciken are good. For some reason, there were days that a baked potato was all I could eat due to the diarreah. Avoid raw fruits and vegetables and high fiber foods.

Also, it is important to note that you should limit all sugars. There is lots of research that indicates that sugars feed tumors. I would not suggest ice cream for that reason.

judyv3
Posts: 66
Joined: Dec 2013

We all know how frightening this is.  I have 11 days of radiation left.  I can only say that I try to take things one day, sometimes one hour at a time.  I have read horror stories about this treatment and I'm sure you have as well.  As the people here will tell you, everyone is different and they react differently to the treatment.  

To this point (and I know that these last treatments can be difficult), my skin is in good shape.  I have had the opposite problem of most people here, I did not get diarrhea, I got constipated.  When that happened my BMs were the most pain I ever felt.  It happened twice.  I am still trying to balance stool softeners and Miralax, but the pain is bearable.  I have a portable bidet - it has been a godsend.  I think the holidays have actually worked to my advantage.  It's awful to have to have this at this time of year, but I get breaks in my treatment.  I had three treatments during Thanksgiving, three treatments this week, and three treatments next week.  It gives me a little time to heal.  My last week will be five treatments and that terrifies me.  But one day at a time.

I have not had issues with incontinence and use a bathroom across the house from my bedroom.  I've been fine with that.

I am eating a very bland diet, drinking 64 ounces of water a day - very important.  My weight has been stable (though I certainly could use to lose a few pounds - every time I say that someone scolds me).  

I don't mean to overload you with too much information, but I'm right in the midst of it so it's very fresh in my mind.  However, the treatment protocol has not changed since the 1970's so all the people on here have gone through much the same thing.

Good luck to you, remember to breathe.  Remember to take time to appreciate the things you enjoy.  

We are here for you.

Judy

jcruz
Posts: 229
Joined: Jan 2013

Hi Thom

 

You’ve come to the right place for support and shared experiences.  I’m now almost 15 months post-treatment and overall doing pretty well.  You’ve already gotten some good advice from others so I’ll try not to repeat.  

Things that I remember -

I spent a little time reading about this cancer and browsing through some of the conversations here and then I just stopped taking in any new information.  I was too freaked out to spend much time here.  I didn’t come back until my treatment was over.  I handled this experience by just putting my head down and moving forward slowly, sometimes a day at a time sometimes a minute at a time.  However you approach this is what is going to be right for you.

I couldn’t keep myself hydrated enough even though I tried.  I had bad cases of thrush after each round of chemo and it hurt so bad to swallow.  I went into the infusion center 2 or 3 times a week for hydration continuing for several weeks past the end of treatment.  My port really got a lot of use.

Protein - I made myself smoothies daily with greek yogurt, frozen fruit and whey protein powder.  I pretty much lived on those plus toast and ice cream.

I was on pain meds even before I started treatment because I’d needed a gynocological surgery (possibly related to the cancer - possibly not) so I juggled the oxy, stool softeners and miralax from the beginning.  I didn’t have diarrhea until the very end and was able to deal with it just by discontinuing the miralax.

I used at various times aquaphor compounded with lidocaine, hydrocortisone cream, neosporin and then after the treatment ended silvadene.  My burns healed pretty quickly.

I took 7 months off work.  I needed that time for my physical and mental well-being.  Others work during treatment or return to work sooner than I did.  Everyone’s experience of this is different.  I hope you don’t have to wait a long time before you start treatment.  I had about 6 weeks to wait as I got the surgery, had all the scans and consultations.  It seemed like forever and it really was better once I started treatment.  I live alone but I had a cadre of friends who drove me to all my appointments and who checked in with me regularly.  I hope you have friends or family who will be able to help you out.

I wish you well on this journey.

Janet

xgriegoj
Posts: 1
Joined: Dec 2013

Thom, i was diagnosed in june 2013. i went thru the treatments chemo/ radiation although it was scary and painfull i am glad to say the tumor is gone. if you need any support feel free to message me. good luck brother.

 

LOGIKA2005
Posts: 2
Joined: Dec 2013

i was just diagnosed with colon cancer...the tumor is 20cm in my lower part of my colon...i am scared at what i'm about to face...i have a 4yr old and an 8 yr old....im not ready to go yet...my Dr could't elaborate much as to the details of my biopsy....i'm suppose to go to my specialist on jan 8th...not looking forward to it...anyone have any words for me?

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry about your diagnosis. The information about your biopsy should be in a report, which is accessible to you. Most hospitals have all of your records online, accessible to patients and specialists. I think that the treatment for colon cancer is different from anal cancer, not too sure.

Of course you are not ready to go yet and I pray that you have many, many happy and healthy years ahead. It is very anxiety producing waiting to see your specialist. Once you get a plan in place and feel confident about the team that will be treating you, you can shift into combat mode! You have time now to get things together for when you will need some help with daily chores, etc. People will want to help you. Let them! Decide what needs to be done and give people specific ways to help. Check lists will come in handy for helpers.

You also have time to research where to get treatment. You want to make sure you get to the best cancer hospital that you can. Not all hospitals have the same survival rates for specific cancers. You can start with this website:
http://health.usnews.com/best-hospitals/rankings/cancer

My child was away at college when I was diagnosed, so I did no tell her about my cancer until I had all the information about my treatment and what it would entail. By that time, I had confidence that I could handle what was ahead and that my chances of survival were good. With younger children, you may want to explore ways to let them know what is going to happen. Many hospitals have programs that help you handle informing children. Children will act out their emotions differently than adults would, and this may present some parenting challenges that you will need help with. I have seen some booklets on the topic with various suggestions.

sandysp's picture
sandysp
Posts: 798
Joined: May 2011

You are in the most difficult period. After they did my biopsy they sent me for a CT scan and found more tumors in my "pelvic bowel". I was terrified that it was all the "invasive" anal cancer since it's all so close together.

I was lucky. After having a ten centimeter ovarian cyst removed and others that were also large, I started to feel better than I had in many years. All that was pressing on my bladder and causing nerve pain.

We really are lucky to have invasive anal cancer rather than some other type of invasive cancer. The treatment is a few weeks of mini hell but I got much better hair out of it and two and a half years later can say I feel a lot better than before my diagnosis.

It's a new life, though, after a cancer diagnosis. A lot of follow up care is vital. Some people just want to get the treatment and forget about it, but you do need to go back for regular checkups and learn way more about your body than you probably want to know.

I have a whole new relationship with myself. In a way, the cancer was good for me. I exercised all the way through it, walking and using tai chi videos (which I had been using prior to the diagnosis). When I did the Tai Chi moving meditations and standing meditations, it was pretty much the only time I wasn't in pain. So not knowing why I was in so much pain made it somewhat of a relief when I got the diagnosis. Some people don't have pain but I think it depends on the location of the tumor and it's size.

Let us know all about your stage. I totally agree that you should be treated in a Cancer Hospital that treats this cancer often even though it is rare. My doctors in Westchester County, just outside of NYC advised me to get surgery right away. I am so glad I gathered all my records and sent them to MSKCC.

Good luck and stay close.

Sandy

caholz33
Posts: 19
Joined: Oct 2013

Welcome to this crazy experience.  It sounds like you've already learned so much about what to expect! I finished treatment in July for Stage II anal cancer.  My tumor was removed prior to diagnosis (as an unknown mass) which is both good and bad.  Good to get it out of me, but then you need to heal a bit before starting treatment.  For lotions I like Aquaphor, also a spray called Regenecare HA (amazon) and aloe gel directly from an aloe plant in my kitchen.  TAKE STOOL SOFTENERS every day!  I'm absolutely shocked no doctor told me this, but luckily I found two survivor buddies.  I also took a mild laxative daily, balancing myself on the mild side of diarrhea for maximum comfort.  Later on that will come naturally from the radiation.  If you want to take Immodium or something else for it, please start out with a 1/4 or 1/2 dose.  If you accidently swing the pendulum to constipation you will regret it!  Avoid fiber, tomatoes, too much cheese/heavy meat, and also avoid fresh fruit/ veggies which might have bacteria you won't be resistant to.  For nutrition I ate cooked carrots and sauteed spinach, no-sugar applesauce and bananas (wash skins and peel carefully to not contaminate fruit). Bananas and greek yogurt are really good for digestion!  So funny I've noticed others mention ice cream.  I started eating it when I got chemo mouth but then continued - I've never been into ice cream and haven't eaten it since treatment, but I loved having a little every day.  Weird to not eat fiber but it's too hard on your bowels: white bread instead of whole grain!  The anti-nausea med (zofran)worked great for me, no nausea and never threw up.  Did get chemo mouth - painful and annoying ... if you have time get your teeth cleaned prior to starting treatment so the gums are in good shape, very stressful for mouth and there will be days you can't brush.  Biotene really good for dry mouth, which not only makes you more comfortabe but reduces bacteria.  Wow, I didn't set out to ramble about everything, but things are just coming back to me.  Treatment wasn't too brutal until the last days and the few days right after radiation was over, but by that time you are so close to being finished!  Avoid germs and being in public - you can't risk getting a simple cold, and with your body weak from chemo, you WILL come down with anything you're exposed to.  Don't jeopardize your treatment - stay home and get on this site or Facebook if you're bored, do not go out!  When you must go out try not to touch anything, use sanitizer, and wash hands as soon as you can.  I got Tomotherapy radiation, it's a type of very finely directed radiation that helps to minimize collateral damage.  Check into it and see if that is available in your area.  Stay positive and try to communicate with positive caring friends as much as possible.  Hopefully you are in a relationship and have a caretaker, but if you don't you can still get through it fine, it's more of a psychological comfort to have somebody with you.   Good luck!!  It's tough treatment but it's a really pretty short time frame compared to other cancers.  If I had been given a choice between 3 or 6 months of easier treatment or getting it over with in 6 weeks, I would have chosen our type of regimen - you'll get your life back sooner!  Please post and let us know when you start and if you have any questions about anything.  I would love to be of help to somebody going through this shared experience.  Best Regards, A.H.

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