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pem
Posts: 61
Joined: Mar 2013

Just figured out how to make new entry.  does anyone know what type of treatment a stage 3 would be.  im scared because im thinking i was treated as a stage 1 or 2.  i finished 4 days ago but after reading a lot of these entries i seem to have had the same treatment as most 1or2 stages and sometimes even less radiation.  they only gave me 30 treatments of rad but i did get the same chemo as most did.  im really scared here and cry all the time due to this treatment not working.  i find everyone very helpful on this site and can only hope for a response.  god bless you all

Clovergirl
Posts: 48
Joined: Dec 2012

I'm stage 4 and getting the same treatment you had. I have had 10 of the 30 radiation treatments and have had one round of the chemo with the second round to follow. The treatment Protocol is standard and used for all stages. I have two mentors that were both stage 4 and both are doing well. One is 8 years out of treatment. Please try to stay positive. I know it's scary. Prayers to you.

pem
Posts: 61
Joined: Mar 2013

THANK YOU FOR YOUR RESPONSE.  I WILL PRAY YOUR JOURNEY THROUGH TREATMENT GOES WELL.  MAY I ASK HOW YOU CAME ABOUT HAVING MENTORS.  I NEED TO TALK TO SOMEONE BADLY ABOUT THIS BECAUSE I CRY ALL THE TIME AND AM SO SCARED.   I DONT KNOW HOW TO REMAIN POSITIVE.  I HAVE A GRAT HUSBAND WHO TENDS TO ALL MY NEEDS AND I BREAK DOWN IN FRONT OF HIM ONCE AND A WHILE BUT HES NOT SURE WHAT TO DO FOR ME TO KEEP MY SPIRITS UP.   THX AGAIN

Clovergirl
Posts: 48
Joined: Dec 2012

I was set up with mentors from the hospital I'm being treated at. I also have a social worker. I had so much anxiety and was really having a hard time. Check with your medical facility about what services they may offer.I would think there may be other organizations that could assist you as well. Maybe someone on here can recommend some organizations. Stay strong.

pem
Posts: 61
Joined: Mar 2013

thanks so much for that information.  my fear is making that first step to ask for help.  but i will try and put my fears aside.  thx pem

Marynb
Posts: 1134
Joined: Aug 2012

Know that this cancer has a high cure rate. You ask how to keep your spiritis up and how to find the strength to get through this. I don't know if you are a person with a belief in God, but my faith is what got me through this and what continues to get me through my battles with cancer. On days when I don't rely on my Christian faith, I feel lost, helpless, and frightened. Thankfully, those days are few and far between for me. I know that I am not alone and if God be with me, all things are possible. You will be in my prayers as you go through this. You are not alone.

mxperry220
Posts: 368
Joined: Mar 2011

In 2008 I was diagnosed with Stage 2 anal cancer.  I received 30 radiation treatments.  So far I am NED(No Evidence of Cancer).  Monday I see my chemo doctor for my annual exam.

Mike

Phoebesnow
Posts: 451
Joined: Apr 2011

There are many stage III survivors here, some III b some 4 .  I am sure they will respond soon

I had less than 30 tx.

Martha knows more about tx for stages.

 

I

 

y

pem
Posts: 61
Joined: Mar 2013

AS SOON AS I SAW I HAD RESPONSES GO FIGURE I STARTED TO CRY..  ALL YOUR RESPONSES ARE GREATLY APPRECIATED AND I THANK YOU ALL  FROM THE BOTTOM OF MY HEART.  THRILLED TO HEAR PEOPLY ARE DOING WELL WITH ALL STAGES. MY PRAYERS ARE WITH ALL OF YOU.  PEM

LisaMMiles
Posts: 38
Joined: Mar 2013

Pem, I just finished my treatments and am only 5 days out. I had 30 rad treatments and only the first round of chemo as my body was pretty worn out from the rad that they would not give me any more chemo. I was only a stage 1 as they got like 99% of the tumor out. I had all the same fears and cried all the time too as I am a mom of 4 kids and I am only 46 yrs old. I was told before surgery that it was just a polyp that would go bad eventually. After it was removed as I am in recovery they came in to tell me that it is a very rare cancer that only 1% get. And at that moment had no idea what kind it really was and had not idea if there was a cure :( I went from that Thurs till the next Monday not knowing what I had. But knew that because it was so close to the colan that they could not remove it all without hurting the colan which woud cause a lot more problems. So we had to move on with the treatments. I did find out I was like 98% curable, which put my mind at ease a little but still my world came crashing down!! I cried a lot! And still do. I finished treatments last Friday, and am now in the two weeks of the first part of healing. I will be honest and I know everyone is different, but the treatments were horrible for me. Lots of side effects! Chemo made me really sick and tired, and gave me mouth sores all the way down through my body which was horribly painfull, and the radiation has my lower end pretty much a mess, and am still hurting really bad 5 days out. I wish I would have been told these things were gonna be like this. But even if you prepare yourself, I dont think you are ever prepared for this :( They say that the radiation keeps on radiating you even up to 6 day or so after you are done. And it does. I started to get the pain about 3 1/2 weeks into radiation and it continued to get worse for me. And even 5 days out I am still on fire and hurting real bad and acually got flu symptoms the last few days. So really hope I dont get any sicker. If you have any more questions dont hesitate to ask :)

pem
Posts: 61
Joined: Mar 2013

thx for the words of encouragment knowing im not alone with stage 3.  now that you say it i think im stage 3b or c.  mine was in my nodes on the side of my groin.  cant remember what they called those nodes.  but according to my oncologist she said it could be in all my nodes.  i hated hearing that.  but it makes sense because they just might not be swollen yet to show up on an mri.  hopefully all the chemo killed those ones not detected yet.  god bless you        pem

pem
Posts: 61
Joined: Mar 2013

ITS GREAT TO HEAR YOUR DOING WELL..IM SURE YOUR MONDAY APPOINTMENT WILL BE GOOD NEWS.  thx for taking the time to respond to me.  god bless

eihtak
Posts: 878
Joined: Oct 2011

Hi, I just posted a response on the thread about swollen lymph glands.....Stage3b, same treatment, doing great!

mp327's picture
mp327
Posts: 3073
Joined: Jan 2010

To my knowledge, your treatment was correct.  Stage 3 receives the same treatment as lower stage anal cancer.  I would suggest that you take a look at the guidelines for this treatment as outlined by the National Comprehensive Cancer Network.  This will give you a lot of information and hopefully put your mind at ease.  Please visit their website at www.NCCN.org and register.  This will give you access to the most up-to-date information.  I understand your anxiety--we've all been there.  I wish you all the best!

pializ
Posts: 294
Joined: Nov 2012

Well done for finishing treatment! Now to recover. There is a good article by Dr Peter Harvey 'After the treatment finishes - then what?' Please google it. It is most helpful!

I was diagnosed with stage 3 SCC anal cancer in November.

My treatment started 18th December 2012 and finished 25th January 2013. Lymph nodes in pelvis involved, not in groin. I was given 28 RT's & Chemo Mitomycin and 5FU in first week and 5FU in week 5. The first 17 RT were aimed at general pelvic area, whilst the last 11 were aimed at tumours with 3 cm margin.

When I was in treatment (& since) I followed a low fibre diet which I think helped. I did some research on this site and Macmillan and prepared myself by purchasing things I might have needed during treatment. My oncologist was supportive in prescribing the next stage of pain relief as I requested, so was always in control of pain. I never got to the morphine stage. I have however had a few 'meltdown moments' along the way. This is such an emotional time. Our worlds have been turned upside down & inside out. But we can do this!!!

I have just had MRI scan and will have an examination under anaesthetic in April, so still waiting to know if I haver responded to treatment. 

I coped quite well with treatment,although I had vaginal thrush which probably was the worst problem for me at the time. The Fluconazole cause me to have raist ALT, so had to discontinue that and managed it then by using an antihistamine. Post treatment I had a bit of a problem with diarrhoea post treatment, that is no longer a problem, and in fact, when I did have it, was managed OK with some medication. I have just started in the gym aiming to help reduce fatigue levels (I assure you this is the NEW me.......not a gym lover). Just doing a bit on treadmill to begin with and taking it gently. Also planning a bit of a swim & yoga. Need to fit in some massage etc too.

Good luck with your recovery

Liz

 

pem
Posts: 61
Joined: Mar 2013

Thank you for sharing your journey with me and for the great advice.  I can only hope im as energetic as you are so shortly after treatment.  I will read that article you suggested. May I ask though what the scc means following the 3 for your stage.  god bless you and good luck on your journey through recovery.   pem

pializ
Posts: 294
Joined: Nov 2012

Squamous cell carcinoma

 

pem
Posts: 61
Joined: Mar 2013

oh...thats what mine was called also but with the word invasive in the beginning.  after i read your entry i found out some terrible news about my stage. according to the staging process i am a stage 3b which is not a very good prognosis.  i cant stop crying because treatment success is a lot lower.  apparently when it goes to your groin nodes its worse.  im soooo scared.  thx again and god bless you    pem

 

pializ
Posts: 294
Joined: Nov 2012

It would seem that the spread of anal cancer to my pelvic lymph nodes (I absolutely refuse to call it 'mine'.....cancer does not belong to me, but it has been a space invader...... my space!!!) indicates that I too would be at stage 3b, 1 lymph node in mesorectum, and 1 further up in pelvis. I remember being really shocked discovering the spread and what it could mean to survival rates.

However, what I have realised is, that however much I hate what has happened, any amount of worrying is not going to change things for the better. All I can do is allow myself to be treated according to the protocol and take some control of my health. That is why I am careful to eat foods that are gentle on my digestion & have started out on an exercise regime (although gentle).

I am looking forward to, and also fearful of, knowing the results of my recent scan, and the examination under anaesthetic I will be having mid April, but I also know, that whatever it is, I WILL handle it, because what other choice is there? I have had meltdown moments as I have said, but that has mainly been to do with my frustration about how caustic this treatment is, and all the possible ramifications, the long term effects on our bodies. I still struggle thinking that in the 21st century that they have not come up with any better treatment, not just for this cancer, but all others too. Hopefully in future years the chemotherapy and radiation will just be history, and they will be thinking 'they did WHAT??'. But I am learning to accept that it is what it is.

I don't think I have come across anyone yet who hasn't responded initially to treatment, so i take some hope from that.

Something else I now do, rather than spend all my spare energy on housework, I am meeting up with friends more, taking time to listen to the birds singing. I feel that I have been given a second chance & I really don't want to waste it. I am trying to 'park' my worry about response to treatment, because that only gets in the way of me enjoying what I have now.

Have you ever heard of mindfulness? Jon Kabat-Zinn is the 'guru' of mindfulness. I have his cd's 'mindfulness for beginners' and find it very helpful to just let thoughts happen. Thoughts are just that, not facts........

Be kind to yourself. I hope the above has a few tips to help you cope

Liz

PS I am a worrier by nature

eihtak
Posts: 878
Joined: Oct 2011

Breathe again!!! Seriously, sit back breathe in through your nose, hold for 5 or 6 seconds and out your mouth. Repeat several times. Stress is what will make it worse not your stage.

I remember feeling as you do....my doctor asked me to stay off line and quit reading more into things for just a few days. It was at first hard, but thats what I did. I tried to keep busy with reading non-medical stuff, and focus on getting my energy back. Your prognosis is still good so don't waste your needed energy with too much fear. I know this is so much easier to say than to do, but remember we have been there. Yes, I too sometimes let my mind wander to the what-if of recurrance, probably always will at times, but right now its pretty rare. Keep in mind that some people will not know they are sick until symptoms present themselves making them seek help, now, you will be closely watched and checked, so if anything should be brewing it will be found early.

I have always been a prayerful person, and there comes a point in life with some things that I have had to say...."ok, I truely can't handle this any more, don't know what to do and so I'm turning it all over to You, (God), sorry, I know You have bigger problems in the world, but this is out of my hands". This may not work for all, but it has never let me down and gotten me through some major challenges. If this is not your way, thats ok, because I have already said prayers for you and have a feeling you will be just fine.

Please, try the breathing thing, maybe a warm bath, and a good book!

Eliz3
Posts: 32
Joined: Feb 2013

Hello everyone,

Thank you for your posts, they are so helpful.  I just wish my sister would ask more questions and express how she is truly feeling, is it the norm to keep it so much to yourself?  I also don't know if it is right that she knows so little about what she is about to go through, unless I ask I don't get told too much, I dont want to keep pushing for information but I have to.

It has been so long since her diagnosis, it will be ten to twelve eeks by the time her treatment begins next month.  I get so frustrated as she could be 3 or 4 weeks into her treatment had she of been started earlier.  I would want it done ASAP if it were me but she is just taking the delay in her stride.

Also, she was told they don't do 'staging', this I can't believe, surely they must.

Think about you all often.

mp327's picture
mp327
Posts: 3073
Joined: Jan 2010

I can understand your concerns with the delay in your sister's treatment.  And yes, they do staging for anal cancer.  It's necessary in order for the doctors to know exactly what they're dealing with, such as is the tumor localized, is there lymph node involvement, or any sign of spread to other organs.  I'm sorry that her doctors don't seem to be forthcoming with more information and that she is hesitant to ask questions, making for a concerning equation.  I totally understand your frustration!

Perhaps your sister's desire to not know what lies ahead has to do with fear.  Some people just do not want too much information.

Eliz3
Posts: 32
Joined: Feb 2013

Thank you for your reply MP327.  I do get worried about the delay in treatment, I think I have to calm down a bit.

I told my sister to ask about her staging and he told her they don't do that!  I am sure they must, feel like calling and asking them why not?

Pializ, I did a mindfulness course about six months ago, it was wonderful.  I had trouble staying awake when meditating, which of course is not the idea.  You really have to keep reminding yourself to take the time to 'smell the roses', it takes discipline.

I also really enjoyed your post, thank you.  I hope all goes well with your latest scan, will keep my fingers crossed for you, please let us know how you go.

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

i have missed where your sis is located but i would try to get 2nd opinion fast..... and did pathology do biopsy???? they will know stage....if her doc is saying that they do not stage it ,,,, could it be that they think she has pre cancerous lesion which would be stage 0 or bowen's disease???? i do not know but this is absurd.... i probably have missed all of your info about your sis....but remember that this is a RARE cancer and docs mis diagnosis it all the time.....and treatment is very hard so go where they have great xray machines (imrt) and docs who have seen hundreds of these anal monsters......... my town had only seen about 3 and the next biggest town saw about 10 per year so i went to MD Anderson  but there are lots of great hospitals...... hugs    sephie

Marynb
Posts: 1134
Joined: Aug 2012

I agree with Sephie. I am going to go straight to the point. It sounds like your sister needs to get to a good cancer hospital. It's her life they are playing with. I know there are patients here who went to a local hosptial and they are satisfied with their care. When a doctor tells ana anal cancer patient that they don't stage anal cancer.........run!

Eliz3
Posts: 32
Joined: Feb 2013

Thank you Sephie and Mary.  I will have a good talk about it all with my sister when I visit next week.  I just can't come up with any reasons why he would have told her that, other than if it is the standard treatment given to all patients initially, when it is still in the pelvic area only, and he doesn't stage it then, who knows.  We will get on to it next week, I need to know!

This is a major cancer hospital here in Australia, a very good one, so we shall have to have faith.  I just want to get the treatment started and get it over with, the wait is agony, so i don't know how she manages holding up so well.  One week to go.  I do know they have changed the position she will be in on the radiotherapy table, from legs bent to sraight out, does that mean anything to anyone?

Hope you are all keeping well.

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

who knows about hospitals.... i was in a bull frog position in a mold ( so that i would not move at all) with my arms behind my head and legs with knees out to side like frog ....the mold kept me from moving as the xray machine moved all the way around my pelvis and back end..... this is IMRT...... sooooooo who knows.......   sephie

M1234
Posts: 17
Joined: Oct 2012

I layed flat on my back arms to side and/or on stomach.  My legs were in a mold to hold my postion consistant each treatment.  I received radiation via an IMRT machine.  My stage was 2.  However, my friend who was stage 3 received the same chemo treatment just had 5 more radiation treatments than I did.  She was postiioned face down with a pelvic mold.  I think the positioning has to do with location of tumor and radiation machine.  I do not believe my friend received radiation treatments via an IRMT machine.

horsepad's picture
horsepad
Posts: 87
Joined: Apr 2012

I am a stage 4 survivor, cancer in my lympth nodes and liver.  I finished treatment in Sept. 2011.  I feel great, I look great (or so I've been told) and I am full of gratitude for all my blessings.  My life has changed significantly, not physically but mentally.  Cancer has made me a better person.   I had the same treatment as everyone else and also had a liver resection.  I

eihtak
Posts: 878
Joined: Oct 2011

I love your positive attitude. I too, once told someone that in a weird way, having cancer was one of the greatest blessings of my life. (they thought I was crazy) It has a way of making you a better person. Maybe it just depends on where a person is in life before, then how treatment goes, and then again where you are in recovery and as you move forward.....glad you are doing so well!

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