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New, Scared, and Questions

Namaste93
Posts: 4
Joined: Nov 2012

Wow - So so grateful to have found this discussion board! The posts show incredible strength, wisdom and generosity of spirit.

Before having had a biopsy Wed. under general anesthesia, I was told, should it be positive, this is a very treatable cancer and the treatment of choice is chemo and radiation. The surgeon thought I'd be comforted and that this news would be welcome. And...I've been down this road before for a different cancer. I know how difficult it is to keep up with work during radiation treatments and during the months following recovering from radiation treatment and surgery. I know how depressing and lonely it can be to be a cancer patient -the stigma that comes from other people being reminded of their own mortality and wanting to push that reminder away. All that to say, it's been 7 years since my last course of treatment for a different cancer and I worked hard to get my life back -- my energy as well as social and work life. I was really, really, really hoping for a negative result not only because I want to live but also because I really, really, really do not want to go through treatment again.

You know where this is going....

I did not get that negative result. Luckily I was alone at home and could pace back and forth stomping my feet, swearing, and crying. Wait...what if they are wrong? I called the office back, trying to mask the tears in my throat, saying that sometimes results got mixed up or misinterpreted. No, in this case the results were clear and definitive. Could I get the pathology report? Yes, I could drive by and pick it up. I read it and yes, the results are unambiguous.

Have told just two people in my personal life and the fewest number of people who need to know at work. I had to begin the work conversations immediately as I am leading several projects and I expect the treatment to be intense and to begin as soon as possible.

I did not tell more people in my personal life because the cancer hasn't been staged so I don't know the severity and prognosis. If it is in fact caught early, I want to be able to say that.

What's next? An appointment with an oncologist. A PET scan. A CAT scan.

If you are reading this and feel like answering questions, I have a number...

What's a PET scan like?

I also don't have any experience with chemo therapy and no idea what that will be like. I can't impagine what its like to have that at the same time as radiation.

I also don't have experience with radiation therapy applied to the perianal area and worry that it might damage the surrounding tissue.

Also, it sometimes hurts for me to sit at all and often hurts for me to sit for long stretches, yet I'm a reseacher and all my work is at a desk. Anyone in a similar situation? What have you done to cope?

Finally, at least two people on the anal cancer discussion board seem to be in the research triangle park area of NC... I am too. Any advice on treatment and services locally?

And finally, finally, I'm scared and don't want to hurt family and friends or push them away with my fear and anxiety. Any advice on how to handle this fear?

My thanks to anyone who has had the patience to read this far. I feel as if I know you and want to send you my love and surround you with healing thoughts.
N

z's picture
z
Posts: 1262
Joined: May 2009

Hello, So sorry you had to find us. 1st the pet scan is a matter of laying there, don't feel a thing. I was off of work for about 2 months. 1 month for tx and 1 month for re cooperation.

I think one of those pillows that women use after a pregnancy would be helpful. Martha has a whole list of information and I am sure she will post it all.

I understand the fear and some posters use ativan. I am already on an anti depressant, and I think that helped me through tx.

I am sure others will post soon.

Lori

BC331
Posts: 12
Joined: Nov 2012

I too am sorry for your diagnosis. I am at the same stage you are. Well, my biopsies came back as Carcinoma insitu, however, 2 docs believe that it is actually invasive. So back under anaesthetic for more biopsies and more tests. It's definitely a scary time. Im sorry I cant really answer any of your questions. Just letting you know you are not alone. This is a great site for support, as well as information.

Jo Joy
Posts: 39
Joined: Oct 2012

So sorry to hear that you have been through treatment before. You will get through this too. It is a relatively short treatment and is less intense than some other cancer treatments. I was diagnosed at the end of Sept. I am now through the first week of radiation and have done the first course of chemo. It took awhile for all the testing and radiation planning to get done. I also traveled out of state to tell my daughter, who is a freshman in college, about the diagnosis. I didn't want her to hear the news via phone call like I did.

The PET scan is relatively easy. They will inject you with a radio active isotope and you relax for about an hour while it distributes throughout your body. Then you lay down and they put you into a machine for about 30 minutes for the scan.

As others here will tell you that 2 courses of chemo - one at the beginning of radiation and one at the end of radiation. My docs explained that the chemo helps confuse the DNA of the cancer and "light up" the tumor to make it easier for the radiation to kill it. Standard protocol calls for 30 treatments. From what I have discerned from posts, is that the dosage can vary based on the individuals staging. I am only getting 25 treatments but don't know for certain the dosage because my rad oncologist has been out sick until the 26th.

I did not have any dramatic side effects from the chemo. The only thing I have noticed is that I am constipated and food doesn't taste as good as it used to. I still have my appetite however and I have not had to change my healthy diet yet. I had chemo connected on a Thursday and had it off on Monday. I too have a desk job and I am a department director. I have a soft pillow and a "doughnut" that I bought from a medical supply place. I am still working full time but I am spending almost every hour outside of work going to treatment and resting and sleeping.

I do make time to see friends that are of my faith and to laugh with them and to get their support. We always plan something fun for the future so I can look forward to it. In the beginning I couldn't get through telling my friends without crying. So what I did was to write it all down. I wrote what I did know and what I didn't know at the time. The one thing I requested from them was that they allowed me to express whatever I needed to whether it was positive or negative. They all love me enough to grant me that. I told the rest very few details. The rest, like the prayer team at my church, I told them that I had been diagnosed with cancer and that I would be undergoing treatment. I also told them that I would not be answering any questions about it but I would be giving them updates along the way. I have not told everyone in my life.

I will tell you this - everyone responds differently to the protocol. Glean wisdom here to get ready for your journey. Get the items they will tell you will help with side effects, and do what they suggest to prepare. Don't be shy about asking further questions.

Marynb
Posts: 1134
Joined: Aug 2012

Hi,

I am sorrry that you were dignosed with this cancer. I too, have another cancer. Your doctor is correct, this cancer is highly treatable and curable, if caught early. The other rare cancer that I have has no cure, other than surgery if caught early.

The treatment is no day at the beach, but was not nearly as bad as I had imagined. I was blessed that my body handled the chemo fairly well. I did not experience the worse case scenario side effects. I did have very low white blood counts during both courses of chemo, and that required shots, which were not fun. The treatment is doable. There is pain involved with the radiation towards the end,but the healing is farily rapid. All in all, I would say it took a few weeks to recover from the burns. The long term effects of the treatment include severe fatigue for me. Also, I had diarreah for aout a year. If you go to a very reputable cancer center, I think your chances for long term injury to surrounding tissue and organs is minimal.

I also had pain sitting for long periods. I had a desk job and this presented problems. I am currently looking for a job where I do not have to sit at a desk all day. I am an attorney, looking to make a career change to avoid sitting long periods and to minimize stress and do more meaningful work.

I do understand your fears and concerns. It sure doesn't seem fair to have cancer twice and it leaves me wondering what I was exposed to that has left my body cancer prone. I will say, that this cancer is the least of my concerns because it really is so treatable.

I do not live in NC , so I can be of no help there.

Sending you prayers and postive thoughts, and a big hug.

Namaste93
Posts: 4
Joined: Nov 2012

Dear Wonderful People!!! Thank you all so much for your kind words, support, information and, especially, for helping me to feel less alone. It helps me for you to say you're sorry for my diagnosis. So, I am so sorry for yours! MaryB, you are so strong and wise, and generous despite your second, worse, cancer. It's hard for me to feel too sorry for myself seeing how you carry your load! Before I logged on here to check for messages, I was feeling very strange -- almost like I was in an alternate universe -- everything seems different, changed, from what it was before Friday.
I need to wrap myself in The "prayers, positive thoughts, and hugs" that are coming my way because being stressed is entirely counter-productive. We need to boost our immune systems, not suppress them!
I forgot what it was like to be diagnosed with cancer the first time. That was 2000 and it was ductal carcinoma insitu. Seems harmless but the treatment was difficult. Many opt for mastectomy and that is one of the recommended treatments. I had multiple surgeries to be as conservative with tissue removal as possible but it took several to get clean margins. Then the radiation treatments. Five years later I was diagnosed with the same thing in the other breast. Then I was truly depressed because I knew how difficult the treatment was. I had the same treatment but this time exercised all the way through (long walks) and that helped. I was kinder to myself that second time about leaving work early. The fatigue lasted months. I got a prescription for provigil to treat it. So, I've been clean 12 years in one breast, 7 years in the other.
That cancer was different than this though because there was no possibility of matastisis, so many people have had it and so many resources are available to those with breast cancer, it required no chemotherapy, and few complications associated with the radiation, other than fatigue and lymphedema (and I didn't have the latter).
Still, I've been very encouraged by what you have shared with me here. You are all an inspiration. And for the one who has not yet started treatment -- thank you for keeping me company in the same space for a while!
In between the two breast cancers, I took care of my mother while she died of lung cancer. That's why I hesitate to involve friends and family. I know first hand how difficult it is to be a bystander. But the one friend I have told has been wonderful -- just incredibly supportive and I don't get the feeling that I'm causing her stress or suffering.
Joy - Thank you for the detailed sharing about treatment and also, I'm going to borrow your approach to telling people. I'm worried they'll ask me what type of cancer and I'm embarrassed about it. Also, I don't want what happened to Farrah Fawcett to scare people since everything I've heard is that the vast majority of people get over this with treatment. I thought I would say "I have a very rare but highly treatable cancer" and leave it at that.

Marynb
Posts: 1134
Joined: Aug 2012

You surely have been a fighter for a long time! God bless you. I tell people that I have a rare gastrointestinal cancer, which is true. That is usually enough information and nobody has ever asked for more information. Of course, that may have something to do with that don't go there attitude I had a reputation for. Lol.

mp327's picture
mp327
Posts: 3020
Joined: Jan 2010

I'm sorry your diagnosis has led you to this site, but as you are already learning, there are many great people here who will support you through this journey. I understand you have many questions and I think most of them have already been answered by the others. My first suggestion to you is to go to the website for the National Comprehensive Cancer Network (NCCN.org) and register so that you will have access to the latest information on anal cancer diagnosis, treatment and follow-up. It will give you lots of good info which may prompt lots of questions for your docs. Do not be afraid to ask them questions--you have a right to any and all information concerning your health. Waiting for treatment to begin can be an anxious time, but all the preliminary things must be done first so that the doctors and you completely understand what is to be dealt with. Getting a PET scan is nothing to fear and it will allow your docs to stage your cancer. After that, you will be ready to meet with your radiation team and get set up for that treatment. One of the most important things I can tell you is to stay well-hydrated during treatment. It's so very important. I would suggest getting in the habit of drinking lots of water right now.

As for whether or not to tell people about your diagnosis, that is totally up to you and what you are comfortable with. You are under no obligation to tell anyone if you don't choose to.

This is a successfully treated cancer. Treatment will not be fun and there will be some side effects and issues. However, we are here to help you deal with things and make your journey easier than ours was. I had no support when I went through treatment in 2008. It was very lonely. However, you will have all of us to help you get through this. Ask us anything and tell us what you need. Please keep us posted on what's coming up. You will get through this just like the rest of us have and I wish you all the very best.

eihtak
Posts: 868
Joined: Oct 2011

Welcome to our family. I told someone else once that like most families we don't choose them, they just happen. Take comfort in knowing that you are in one of the best here! This site has been such a source of truely helpful information, inspiration, encouragement, laughter, and friendship. We are here for each other 24/7 no appointment needed.
A little less than two years ago I was diagnosed with Stage3B Anal cancer. Treatment was rough like you have heard, but short when compared with many others, and certainly doable with help from people here. Everyone reacts differently and its not unusual to have some days in the hospital, though many do not. My tumor size and placement required that I have a colostomy bag, it was to be reversed when done but due to some permanent radiation damage that has not yet and most likely ever will happen. I am adjusting just fine. At my one year PET scan I was NED on the Anal cancer but was diagnosed with Secretory Carcinoma of the breast, a rare slow growing cancer. Treatment for that was a mastectomy ( I opted for double), this week will be 8 months since that! I have scans for both in Dec. so getting that anxious feeling already.
I don't mean to ramble, but it is inspiring to me to hear that you are a BC survivor. I have found a huge difference in how even family talks about my BC but is still a little uncomfortable with talk about AC. I try to educate and talk openly when appropriate, its a cancer that society needs to become more informed of. They have come a long way though. In the beginning, my kids ( I have five in their 20's) used to just say I had "lower" colon cancer.....they are now able to be more specific about anal cancer. I doubt we will ever see the day when it is as acceptable as breast cancer though.
Anyways, just wanted to welcome you, and let you know that we are here to help you through this however we can.
As always, all in my prayers.

7243
Posts: 223
Joined: Feb 2011

Namaste ... I'd love to share my experience .... Not sure how to contact u privately thru the board?? How do I do that fellow friends?? How to contact namaste in private??? I have added namaste to my friends!

Ok ... Figured it out ... See ur private e-mail on this board. Happy to make contact!

StruTanToot
Posts: 108
Joined: Aug 2012

7243...I'm in the Triangle also. I'm curious as to where you went for treatment. I went to Duke.

I'm going to friend you so we can email.

7243
Posts: 223
Joined: Feb 2011

Will look at mail !

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

N,

You are blessed to have found this site. I can't tell you enough what it has meant for me to know someone else is facing the exact same cancer I am. I've told my doctor, his nurses, the techs..everyone about it in hopes they will share with other patients and they do find strength and are encouraged by the people here.

I'm on day 16 so I'll try to answer some of your questions.

PET Scan? That's just what Joy said. Basically, a simple IV line and one shot of radioactive liquid. You rest for an hour in a quiet room and then scans (like a CT) for about 20 minutes. No side effects for me.

Chemo? Everyone is different. I had some nausea but no vomiting. Diarrhea but totally controlled by Imodium at this point. Day 1 (which is chemo start day) was pretty scary emotionally but in reality was much easier than I expected. I developed a skin rash with the 5FU (that's the one you wear home for 96 hours) but Benedryl kept it at bay enough to finish it. My skin yellowed on Day 1 but went away on Day 2.

Sitting? I had some pain too so I got a memory foam cushion for my desk chair. Totally helped it without being too noticeable. I've taken off work until January so I'm not dealing with work issues currently.

In in TN so no help with NC

Fear and Anxiety? The worse part is not knowing. I will warn you about information overload though. And, don't allow yourself to believe just the horror stories either. I found myself reading the bad stuff really fast (not focusing on it) and reading the "not so bad" stuff a little slower. Definitely focus on the positive..that will really help you. But you know that being a cancer survivor already.

Family? Allow people to love you, to help you and embrace you during this time. I would think that anyone that loves you, wouldn't be hurt but would want to show you more love and care.

Well, glad you found this site and I'll add you to my prayer list. Please don't hesitate to reach out to anyone here and post often with any question you have. We have supply lists, ideas, tips and big shoulders.

You are NOT ALONE!! And God Bless!!
Gigi.
My Story is listed as GiGi's Anal Cancer Story, I Believe on the discussion board if you would like to read it.

Dog Girl
Posts: 100
Joined: Sep 2010

Namaste 93,

Again welcome to the site; hate that you have to be here. My rad dr. told me that he had had patients that had had three different primary cancers. WIth your past experience with BC, I hope you find this tx very doable. And I don't think I've heard of anyone on here getting all the side effects, and even a couple have had very few or they were fairly mild. You will probably get some of them, but while it is not fun, it is a fairly short tx regime and healing is quick after finishing tx.

There is a list on the board somewhere of what supplies you may want to stock up on. Let us know if you can't find it. I think Gigi may have been the last to post it.

The only thing I will add to the PET scan answers is that I am claustophobic and I'm a "big girl", so there wasn't a lot of room between me and the machine. I took a mild valium and actually went to sleep so it was no problem. I just needed someone to drive me home.

I am in NC, but down in Charlotte. I chose the hospital I wanted to be admitted to if it came to that (and I did have to have my mito there because of chemo shortages, but that was just at the chemo center and thankfully I was never admitted.) I then chose the chemo dr. I wanted to see that was associated to that hospital; chose the rad center I wanted to go to that was close by my house, etc... Stru Tan Toot is in the Triangle area and he chose Duke vs UNC. He has recently finished tx, but he should be on in a few days as he is still checking in and I think someone else from the area has reached out to you already as well. Make sure that you can get IMRT rad. if at all possible. It is a more targeted rad delivery and doesn't affect surrounding tissue as much.

Don't hesitate to ask questions. There are no stupid or embarrassing questions on this site. We are all here to help those that are fighting the good fight. I finished tx in 2009 and this board wasn't up then. Knowing what I know now, I wish it had been, so I hope you will find this site helpful. This is a safe place because we've all been there, so you can cry, cuss, PTL, ask, answer, be scared, whatever, but we really want just one thing at the end. For you (and all others) to be victorious in this fight against cancer.

StruTanToot
Posts: 108
Joined: Aug 2012

Hello. We have several things in common...I sit at a desk all day and I'm in the Research Triangle Park.

I've been fine for the most part sitting, as long as I have pain medication.

As for treatment, I went to both UNC and Duke and ended up at Duke because it was closer to my home. Even the radiation doctor at UNC told me I could not make a mistake in deciding between Duke and UNC.

NOW...one thing I learned is that the radiation oncologist I saw at Duke is one of the leading doctors in the world on anal cancer. His name is Brian Czito. The chemo oncologist I saw is Michael Morse. I scheduled an appt to see Morse and he set me up to see Dr. Czito and the surgeon in the same day.

I cannot say enough about Dr. Czito. He is the package deal...superb doctor (again, ranked as one of the best in the world for anal cancer and he is very nice and friendly. I really liked Morse too, but saw him only that first day. Afterwards, I saw his chemo nurse. She was HORRIBLE. Long story, but if you see Morse, let's email.

Please touch base with me via email if you want to discuss UNC and Duke.

Namaste93
Posts: 4
Joined: Nov 2012

Dear Fellow Travelers ~ I can't thank you enough for you help! Corresponding with you has changed the impact this diagnosis has had on me. I feel much less lonely and afraid and your example of strength and survival are so encouraging. I've been looking for the gifts in this (hard to find them!) and you-all are the most important/potent gift so far.
Since Monday a lot has happened. I've been following up on many of your suggestions -- there's so much to do -- scheduling appointments, scans, collecting medical records, contacting HR, delegating and coordinating work assignments. Have scheduled appointments at both UNC and DUke with gastrointestinal oncologists and radiologists -- so I have double the running around -- will choose between the two next week. In the meantime, sitting has gotten more and more difficult. I basically can't do it or else pay a heavy price if I do. I did get the heavy duty pain killers but they only take some of it away. The surgeon said that this is an area where there are a lot of nerve endings. I've had bone surgery twice and was prescribed oxycotin and oxycodone -- For me, they were more effective in controlling bone pain than this pain! Perhaps the difference is that when my leg and elbow were healing, I stopped and let myself rest with leg or elbow raised and immobile. Now I continue to work -- standing at my desk. I will look for some cushions.
StruTan and 7243 thank you so much for your support. I will be in touch. I am so grateful to you and all the others who responded to my call for help. What a difference it makes, not to feel alone.
Sending you many healing thoughts, warm feelings and gratitude!
N

7243
Posts: 223
Joined: Feb 2011

Ok my dear fellow traveler! I just want to reinforce the quality of Duke cancer center and the staff there. Radiation oncology is key to the successful treatment of anal cancer .... This is a rare cancer and treatment planning done by experienced radiation oncogists is absolutely essential. The radiation oncologists at Duke are likely the best in the country .... And the medical oncologists and surgeons exceptional as well! Combined chemo-radiation is the standard of care. You'll get the standard of care and more. Ok, all that said, trust your instincts and choose care where you feel it is right for you! I had the best experience at Duke and recommend the physicians I listed in my private mail to you under CSN e-mail. Then let go, trust your care team, and let them do their job! Then you can be free to do what you can do to heal; rest, feed yourself well, meditate, pray, and "fight the good fight"!

You are never alone!

Also ... I can recommend the excellent support services at Duke to include cancer support groups, free individual counseling (yes free!), The Center for Life, mindfulness based stress reduction- meditation, and more.

Sending strength and Peace. Xo

Note: I can not speak for other options in the area ... It is not that I don't recommend other cancer centers, I don't have personal experience other than duke.

7243
Posts: 223
Joined: Feb 2011

Namaste .... Best wishes as you approach this week of appointments and decisions. Sending positive energy and prayers your way! Friend me on you CSN page and set your settings to receive private mail .... There are two messages there for you. Certainly this is if you choose! Take care!

7243
Posts: 223
Joined: Feb 2011

Thinking of you and wishing you all the best! Prayers your way!

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