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Krissy59
Posts: 23
Joined: Oct 2013

Hi all. I have been reading posts for a few months but finally decided to actually join the discussions. I was diagnosed with stage 3b back a few months ago. I had chemotherapy-5 FU and Mitomycin and 30 IMRT radiation treatments. I had my first PET scan a couple of months ago and everything was all clear! I was/am so happy about the scan but can't help but still worry about the cancer coming back, especially since it was already stage 3b. Please tell me that time will help with my anxiety and worry. Are there others here that were at a stage 3 when they were diagnosed? If so, how many years have you been cancer free? Are there any here who have had a recurrance of the cancer after having a clear scan?

 

Thanks,

Krissy

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I'm very sorry you've had a reason to join us here, but I hope you'll find this to be a good place for information and support.  I'm glad you got good news on your PET scan!  Your worries about recurrence are normal--I think we've all had them.  However, I have been communicating for 5 years with others who were diagnosed with anal cancer, some of them 3b.  The people who are still posting seem to be doing quite well, so I think you have every reason to be hopeful.  I am a 5-year survivor and I will tell you that it does get easier the further out you get from treatment.  The fear/anxiety never completely goes away, but I don't worry constantly like I did in the beginning.  My tumor was staged right on the fence between Stage 1 and Stage 2 and was localized, which was all good news--but I still worried a lot at first. 

We have a good group of people here who are very supportive and willing to share information to help everyone.  I hope you'll join in our discussions.  Welcome!

eihtak
Posts: 809
Joined: Oct 2011

Hi and welcome......I'm glad you have found us but also sorry you have the need.  Thats great that you have completed treatment and have a clear scan!!! In January of 2010 I was diagnosed with 3b anal cancer, and as of now my last scan was also clear. In December I will have my next CT scan.  I am a little off schedule as about 1.5 years ago I was diagnosed with breast cancer as well.  They coordinate my scans so I don't get more than needed. I had a double mastectomy and fortunately doing well in that area also.  The breast cancer was not related to the anal (that we know of), it was a rare slow growing tumor and I had probably had it first but didn't show up until my first follow-up PET scan for anal cancer, so I guess, the anal cancer saved my life!

Recovery can be somewhat of a rollercoaster with some good days and some not so, but in time I think the good far outweigh the bad. I still have concerns of recurrance but not so often anymore.  The longer I am well the further back it settles in my head.  I don't know if it ever goes away completely, or even if it really should, but yes, it does get easier.  I try not to let the fact that I had cancer define who I am but I also don't ever want to forget that facing this challenge no matter the outcome made me who I am today......and right now, I like me! We want to be well, and we don't want to wait, well both physically and emotionally but that takes time......so be patient. Come here with questions, (nothings off topic), to vent, to encourage, or just to be with other people who know first hand what you're dealing with.

I will keep you in my thoughts and prayers that your worries are put to rest as you move forward in health.

Barb5454's picture
Barb5454
Posts: 61
Joined: Feb 2013

Hi Krissy and welcome. I'm really sorry you had to go through all of this. My treatments ended January 14, 2013 and in March I was told I was cancer free, and continue to be cancer free. I had the same treatment as you. I was Stage 1 possibly Stage 2 and it worked as well. I have seen a lot of posts of people who were at the same stage as you and are doing awesome! I know how hard it is to relax. Believe me, I've posted for reassurance all the time. My thoughts and prayers are with you

jcruz
Posts: 206
Joined: Jan 2013

I was not definitively staged at the time of my diagnosis.  Recently when I asked my oncologist about that he said "well you were an unusual case" and when I pressed for what the stage might have been he said 3a, 3b or 4.  I am now just a year past the end of my treatment and all I can say is right now so far so good.  It's still going to be a few years before I can have any confidence about being in remission.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

Hi Krissy. Just wanted to tell you I was 3b. Diagnosed Feb. 2012 -  After going through treatment, PET scan in July 2012 was clear.........So this July I was one year cancer free....I worried a lot at first, but it seems to be getting a little better now......... So glad you made it through the treatments and got a clean scan!

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry you were diagnosed, but glad you found this site. You will get many tips as you recover. I hope your recovery goes well!

Krissy59
Posts: 23
Joined: Oct 2013

Thank you all so much for your replies. It is very reassuring to hear that the worry and anxiety improves with time and to hear that there are others who were stage 3B and are still cancer free and doing well!! What wonderful news. Thank you all for being here to have others to walk the journey with. May God bless you all.

horsepad's picture
horsepad
Posts: 77
Joined: Apr 2012

I was diagnosed stage four, that was a little over two years ago.  I too worry, stage 3 and 4 are scarry because the survivial rate is low.  It does get better with time but that fear will never go away for me.  I used to have a friend go with me for CT scans, now I go alone.  I felt initially I would be an emotional wreck if given bad news but now I am so grateful for the time the Lord has given me that I know I can handle any bad news with just God at my side.  I am not aware of any long term stage four surviviors but if they are out there, I would love to hear from them.

coolwater911
Posts: 3
Joined: Nov 2013

I have been reading the posts of so many courageous people.  I had a Mohs surgery about 7 years ago for a basal cell carcinoma, but that was nothing compared to my recent diagnosis.  I am also waiting for the results of an excised mole (hopefully no melanoma)  I was recently diagnosed with Stage 3A (luckily no spread)anal cancer, and I will begin my radiation and chemo treatment this coming Monday.  I am so frightened that I can hardly concentrate on anything else.  I have also read of the many horrible experiences with the radiation burns and side effects.  It almost makes me want to run and hide, but I know that I cannot.  I thank each of you for sharing your stories and experiences, the truth is tough, but much needed.

pializ
Posts: 255
Joined: Nov 2012

Hi there,

Sorry about your need to find us. Here you will find plenty of support & information. I am so glad I discovered it before my treatment began last December.

I was stage 3A when diagnosed & currently awaiting follow up check next Monday, but so far so good.

People have had variable tolerance to treatment. I was lucky, like a lot of others, although not a walk in the park, it was doable (& now seems so long ago). You probably won't notice too much change to your skin until weeks 3 to 4, & this varies again from person to person. Some have used pain relief,  others none. I did, but not in vast amounts, just enough to manage without allowing the pain to take over. I was off pain relief about 3 days after treatment ended. Make sure you keep yourself well hydrated & eat more protein than usual as it will help your skin repair. Ask about a mouthwash 5o stop chemo making it too sore. Wear loose clothing. Take anti nausea medication as prescribed (easier than trying to get on top of it afterwards).

Fortunately,  compared to other cancers, the treatment for AC is short in duration, & it won't be long before it will all be done & dusted for you.

You will find lots of hints & tips here, & if you don't find what you need, just ask. This is no time to be bashful. 

Wishing you all the

very best for your treatment

Liz

pializ
Posts: 255
Joined: Nov 2012

Check up time here again. 

I am inspired by all of you here & thank you for your ongoing input & support. 

So many wonderful contributors.

Thank you

Liz

TraceyUSA
Posts: 125
Joined: May 2013

Welcome but sorry for the reason you are here.  I did not find this board until after I finished treatment in March of this year.  I'm kind of glad that I did not read all of this until after I experienced it because it can be very overwhelming.  Please keep in mind that everyone's body reacts differently to the treatment and it is not easy but very doable.  I personally did not have the horrible burns that others talk about, discomfort, redness, irritation but not the burns that others speak of.  About a week into treatment, my radiology oncologist gave me a aloe based gel to apply and I did so twice a day as prescribed.  Listen to your doctors and seek advice here as needed.  You are not alone.  Best of luck to you.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I am sorry you have had to seek out this support group, but I'm glad you have found us.  Liz has already given you some very good advice, which I second, and it is true that you will get very good support here--all you need to do is ask us for what you need.  I totally understand your fear about the upcoming treatment.  It is not an easy one, but very doable and short in duration.  I am a 5-year survivor and it all seems like a lifetime ago when I was where you are currently.  I did not have the benefit of a support site such as this one and was pretty clueless about what was about to happen to me and how to deal with side effects.  How I wish I had had the benefit of the support here from people who had been through this already.  It would have made my journey much easier.  One big mistake I made was not taking adequate pain medication and I would advise you not to make that same mistake.  I was driving myself to treatment most days and could not be loopy from the drugs, so I only took them later in the day.  Find someone to drive you to treatment once you begin the pain meds and continue taking them to stay on top of the pain.  As Liz has already pointed out, some people manage their pain very well, some do not have much pain, then others, like me, unfortunately do.  If what the doctor prescribes for you doesn't do the job, ask for something stronger.  You will not get any extra points for suffering!

Please keep us posted as you begin treatment on Monday.  I hope that day will go smoothly for you and that your weeks of treatment go by quickly.  Once done, you'll be amazed at how quickly you recover.  You can do this and we are here to help you.  I wish you all the best!

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I am glad that you decided to post here. You will get lots of support, information, love, and prayers here. Try not to get too anxious about treatment. Take one day at a time. I started treatment almost 3 yrs. ago. I can honestly say that most days, I felt pretty well,until the last week or so. I never experienced nausea, hair loss, or burns. Towards the end, I had burns that felt like a bad sunburn. I did have two times when my white blood counts got very low and the shots that they gave me made me feel like I had a bad flu for a couple of days each.

I did not need pain pills at all. The pain just wasn't that bad. I would suggest that right from the start you keep the area dry. I found creams and lotions made things worse. From what I read here, it seems to be the case.

I hope and pray that everything goes well for you. Try to rest this weekend and eat healthy food. Protein promotes healing, so eat lean proteins now and during treatment.

May God hold you in the palm of his hands! Soon,this cancer wil
be in your past!

pializ
Posts: 255
Joined: Nov 2012

I was stage 3A when diagnosed last year. 

I am sure there are more too, so please take encouragement from all here. If cancer had to visit us, then at least AC is one with a better prognosis than others.

Best wishes

Liz

TraceyUSA
Posts: 125
Joined: May 2013

Welcome and sorry for the reason you are here.  Glad you are doing well.  I once saw a post that said WOW - a day went by and I didn't think about cancer.  That summed it up so well for me.  When I finished up treatment (March of this year) it consumed a lot of my thoughts and still does but less than before.  As time goes on,  it seems to become more distant.  Every good scan and appointment is a victory to be celebrated.  It has definitely changed the way I think about a lot of thinks.

P.S.  I was never given a stage but was told T 2 or 3, N 0, M 0 (that's tumor size 2 or 3, nodes zero and metastasis zero)

coolwater911
Posts: 3
Joined: Nov 2013

I was not specifically told a stage, but I read it on a report.  I am also trying to finish a degree (Senior Year), but suddenly I find it very difficult to concentrate on school work.  And, then there is regular work, but luckily I have plenty of sick time if needed after twenty years there.  I'll have a month off from school if I can get through the next two weeks.  I really appreciate the kind and helpful advice of everyone, it means so much to me.  I do not have the support network that some have, only 1 family member that is close by.  This makes it difficut, because I must drive myself, and do most things alone.  People offer, but you do not want to burden others.  I will probably ask for advice from time to time, but you all just being here is a blessing.

Pam

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I totally understand not wanting to ask others for help, but sometimes it is necessary.  If you do not have family or friends who can drive you to your treatments once you are on the pain meds, perhaps there is a service in your area.  Where I live, the county offers transportation free of charge to anyone in need for getting to dr's appts or treatment for cancer.  I hope you'll check into it.  Also, the American Cancer Society or your local hospital would be a good resource for assistance.  I hope you can find some help.

lowens's picture
lowens
Posts: 33
Joined: May 2012

I am very sorry you have received the AC diagnosis; I had never heard of it until the day I was diagnosed after my first colonoscopy. There is no book on it so this site can be a great place to find some peace of mind knowing that we all have or are going through some of the same experiences. Over the course of 6 weeks, I had two Mitomycin infusions (the first day of Weeks 1 and 4), took oral chemo five days a week (5-FU, except for the two days of infusion) and radiation 5 days a week. I have found from reading this site's discussion board, everyone does not follow the exact same protocol. I, from DAY 1, took the zophran just to stay one step of ahead of the nausea which I was most fearful of. My first three weeks were great! But I attended a benefit for me on Day 1 of Week 4 (day of my 2nd infusion) and I over did it; that evening I got dizzy and nauseated. It lingered from that point on and I just didn't feel myself for the next 6 weeks (3 weeks after last day of radiation). I would tell you to drink water like crazy and keep eating even if you are nauseated; your brain will tell you that you are not hungry because of what the meds do to you. But you have to eat and stay hydrated. Itching was a MAJOR issue for me during the entire ride (I posted on this site about the CRAZY ITCHING from my radiation) but it did go away; thank the GOOD Lord! There is so much more I could share but... As I mentioned before, there is not a book on this diagnosis. And, no two people experience the same thing. Remember to go one day at a time. Remember YOU WILL GET THROUGH THIS. Some of these posts can be overwhelming and emotion can take over. My sister would get so mad at me for getting online and reading scarey things. Pray and we will pray for you as well. We are here for you! 

lowens's picture
lowens
Posts: 33
Joined: May 2012

Must have double clicked when posting last time.

Phoebesnow
Posts: 447
Joined: Apr 2011

Hi, 

 

Sorry to hear of your diagnosis.

 

There is a book that I downloaded for free by Theresa Mayhew.  It really helped me to prepare.  

 

Feel free to come here with any questions.

 

 

 

 

 

 

lowens's picture
lowens
Posts: 33
Joined: May 2012

Thank you, Phoebesnow, for sharing the "book" info; I google the name, of course, because that is what I always do; all I could find was the following: 

*Kicking Cancer in the Butt - Thriving in Spite of Anal Cancer.  A personal statement by Theresa Mayhew, a companion anal cancer fighter, who lost her  battle in 2011. 

If you can find this online again, I would love to have the link.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

This book used to be available through Amazon and perhaps still is.  Theresa's book is very informative.  I met her through a cancer blog and became friends with her.  She included in the book many suggestions submitted to her by anal cancer survivors--what worked for them.  Anyone who wants this book and cannot find it, please let me know.  I may be able to help.

lowens's picture
lowens
Posts: 33
Joined: May 2012

Still no luck; I would love your help.

Lisa

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I'll see if I can find out how you can get a copy.  Give me some time.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

lowens and for anyone else who is interested, try this link to Amazon.com for Theresa Mayhew's book as mentioned above.

http://www.amazon.com/Kicking-Cancer-Butt-Thriving-Spite/dp/1453813233

lowens's picture
lowens
Posts: 33
Joined: May 2012

mp357,

Thank you so much for sharing this resource. I wish I had had it when I was going through my treatment. I will share this with others for sure; hopefully that won't be needed though.

I think I will purchase this for myself still. :)

Lisa

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

You're welcome  I hope it will provide you and others with helpful information.  Theresa would be very happy to know that her advice is still helping others.

nicotianna
Posts: 23
Joined: Oct 2013

Contact ACS to see if Road to Recovery is available in your area.  ACS volunteers p/u patients for appointments & treatments & drive them home.  I used this service & it was so helpful!  Reducing stress will aid in recovery.  This is a big stress reducer!

Try to let others help you.   Helping you is good for them too!

 

Nicotianna

 

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