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approaching 1 year survival of cervical cancer

kty
Posts: 7
Joined: May 2009

I was diagnosed with a stage 1b1 cervical cancer tumor May 28, 2008. I am very lucky to be feeling mostly great...some bowel issues, and still not feeling very sexual..but other than that good physically. As of now I am cancer free accoridng to my follow up visits and PET scans. I have regained most of my strength with only some fatigue remaining, causing an early end to most evenings. My husband and I feel thankful for each new day. For others out there, many bright spots do exist. I am proof of that.

I was extremely ill from my radiation and chemo treatments requiring 3 hospitalizations for the side effects of the treatments. I am fairly small and lost 20 pounds, was not able to eat or keep liquids down. Tried most every known anti-nasuea medications with no relief. Had to have IV fluids everyday. I feel guilty about feeling so good now and not being able to get out of my mind just how sick I was. I worry about the cancer returning and having to go through the treatments again. I was never in pain other than the pain of nasusea and diarreha but was vomitting every hour of the day and so incredibly weak. So many have so much more to deal with, I know I should feel lucky and I do, but I still worry and don't sleep well. I excecise by walking 2 miles a day 5 times a week and am back to working 2 days a week for some normalcy in my life. Are there others out there with these same nagging worries? I am blessed, just need to work things out in my mind.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

I, too, am a cervical cancer survivor. Went into surgery expecting a radical hysterectomy one year ago this month and came out with a diagnosis of stage IV with mets. I have been in remission since Dec. '08. I went back to work full time 2 weeks after my last treatment...to try and feel like I was normal. It's been a challenge! If something could go wrong...it has...and I've pushed on! I continue to experience alot of GI problems, docs think it's scar tissue from the radiation causing intermittent small bowel obstructions, but are not willing to operate until it totally blocks off cause it will just cause more scar tissue. Intercourse is very painful after the fact. Feels like my bladder and uterus have been beaten up. I know I should be very grateful for each day, but there's a haunting of recurrence in the back of my mind. I guess the constant discomfort doesn't help. I've always been a fresh fruit/veg eater and now I have to avoid them because they cause blockages...always a constant reminder...tears appear without warning as I plant my garden. I try my best to keep a positive attitude, but people have told me that I'be become very quiet...don't talk to much anymore...what can I say? How do you talk to people who really have no idea of what you've been through or going through at this moment? The hubby totally lives in the moment...wish I could be more like him. Thanks for listening/reading...just needed to get this off my chest.

kty
Posts: 7
Joined: May 2009

Your post helps me in knowing I am not alone in my nagging thoughts. I am finding it quite helpful to read other experiences in the discussions. I am so glad I found this website. The more we share thoughts, the more we will know we are normal in our feelings and maybe will be able to work through things. My husband is wonderful, but seems to feel I am cancer free and will stay that way. I am glad he can be so positive but it also makes it hard for me to share how I worry with him. I know what you mean about becoming quiet.....it is impossible for anyone to realize just how difficult our lives have become since the diagnosis of cancer and the trials of going through the difficult treatments unless someone has experienced the same emotions and physical difficulties. Thanks for sharing.

tahichkad
Posts: 4
Joined: Feb 2009

Kty,
Congrats on being cancer free for 1 year! I'm jealous! :) I am only 6 weeks post treatment for 1A2 with an affected lymph node. I went in for a cone biopsy Christmas Eve which resulted in multiple bleeds and 4 days in the hospital. I finished 6 weeks of external radiation, 6 weeks of chemo and 3 weeks of internal radiation the last week of March. I found out last week that a surgery to try to save one of my ovaries failed so I'm in surgical menopause.

Like you both mentioned, it is very isolating to have cancer. I have not a single friend near my age (36) who has had cancer. My husband, too, is wonderful. But he seems to think it's all over even though I'm still waiting for my first Pap and PET/CT. I met with an oncology social worker today to try to connect with someone who has a remote clue as to what I've been though. She recommended I come by here.

I wonder when it will be in the past??

Amanda

Lisa0626
Posts: 4
Joined: Jun 2009

amanda,
i survived cervical stage 2 cancer and its been 5 years and the worry of getting cancer again never goes away. i am 37 now so i was 32 when diagnosed. i had a hysterectomy leaving only my ovaries. no children. so you are lucky to have someone who understands you and by your side but as for me 5 yrs of finally being cancer free is great but there is never a day that goes by where i dont wake up and think about it. i think my husband doesnt understand that i cant put this behind me.

marybear's picture
marybear
Posts: 66
Joined: Jul 2008

hi lisa thank you for your post prayers to you my daughter has to have biospys next month dont know what stage gyn says hp is present in her pap smear could lead to cervical cancer she is 20 years old will have to wait for results we are both so upset her dad just passed away 5 months ago from lung cancer but he did have a papillary squarsoma in the throat dont know if this is passed from father to child your input would be much appreciated please help and pray for us will keep in touch God bless you lisa thank you so much for this post Mary

fammem
Posts: 3
Joined: Jun 2009

was just diagnosed with stage 4 cervical cancer with lung metts. Any advice you can give me and where did you get your treatments. My mom is 49 years old. Did the docs give you 20% survival? My mom will be doing radation 5 days a week and chemo one day a week for 6 weeks. Any info would be greatly appreciated. Thanks and God Bless!

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Hello fammem. I too was diagnosed at 49 (I made it to 50), stage IVA with mets. My survival rate is 30-40%...scary huh? I was lucky to be able to get most of my treatments locally (upstate NY); chemo (10)and exteranl radiation (33). I had to travel approx. 150 mls for my first surgery and 50 mls for all the internal radiation (5). I followed my radiology oncologists suggestion and went to Roswell...very far away, but came away unhappy. I told him I felt like a head of cattle going to slaughter...such a large place and so many cancer patients wandering around. I know of people who've had a wonderful experience there...I just wasn't one of them. So, I met with our local ACS spokesperson (this is a very good place to start) and he helped me find other options...and I fell in love with the place I choose. It was small and everyone knew you the moment you walked in the door. We all have different stories, different experiences. Please keep posting...we're here for you.

Lisa0626
Posts: 4
Joined: Jun 2009

sloan kettering is one of the best for amazing cancer treatments and the place to be where you think the imposible i saw it myself! just research your options.

oldspann
Posts: 1
Joined: Jun 2009

I received a call from my gyn this Friday. She tells me my colposcopy reveals carcinoma (cervical cancer). I was at work. i could hear her talking, but my mind couldn't process it. I stayed at work the entire day. Called my husband and he told me to remain positive. my doctor told me that "I'm on it." I assume that means it's in the early stages. i go back on Tuesday for endometrial biopsy to make sure the uterus area is ok. I have cried once on Friday evening. I am trying to remain positive by reading different post and others success stories. I'm ok if I need a hysterectomy. I'm just worried if that will fix things. I feel so alone and anxious, and uncertain.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Keep your chin up oldspann, those feelings your having are all normal. I am a survivor, remission since Dec. '08, of stage IVA cervical ca with mets to bladder, abdominal, and pelvic lymph nodes. Treatments aren't a lot of fun, but with all the choices of medications out there...some concoction is bound to help improve quality of life during them. I ended up on meds, the only one's that seemed to help a little bit, that were often used during the '70s. I know everything is very scary for you at this time and I'm not going to lie and say it will get any easier in the near future. Life will change for you. You will seek to find a new "normal". There are many of us here that know/understand what you are feeling and going through at this time. Hopefully, you have a great support system out there, but here you will find others who truly know the depth of your situation and support you 100%. Keep us posted...let out your frustration...your fears...your anger...we've all been there...done that...and life does go on.

Lisa0626
Posts: 4
Joined: Jun 2009

newly diagnosed,
first you need to find out what stage its in and if it has spread ...they will check your uterus....if you get a hysterectomy they will check if spread by taking lymp nodes and if they come back fine then you wouldnt need chemo or rad. i am now cancer free 5 yrs cervical stage 2 and unluckily spread to uterus. but i am good now cancer free. and i dont mean getting here was easy,but im here so stay calm and focused and take a pen and paper with you to the doctor to write things down and maybe research it later.....

marybear's picture
marybear
Posts: 66
Joined: Jul 2008

Hi Lisa just checking out message boards my daughters pap came back adnormal she is 20 years old gyn says hp is the cause she is on birth control pill for 3 years now we have to do biopsy next month hubby passed away 5 months ago from lung cancer had papillary throat cancer dont know if this is inherited but gyn says sometimes this virus is inheridted she is so scared will have to wait until the biospy comes back dont know what to do we wont know the stage until we have biopsy she has regular pap smears since age 19 so so scared will keep you posted. thank you for posting prayers to you Mary

Friedaf
Posts: 6
Joined: May 2009

Hey there girls. I too am I survivor of cervical cancer. I was diagnosed Feb.2007 with stage 2B. The tumor was too big to operate so they did external radiation as well as chemo each week. During a routine PET scan I was also diagnosed with breast cancer. Yes a different one. So I had a lumpectomy and radiation and chemo for that too. I thought things were going great when my back started to get really sore. A scan showed that I had a lymph node with cancer so I was once again radiated and chemoed. But this was last fall and it is gone!! Then I had a lymph node in my neck with cancer.....just had this removed 3 weeks ago and will start radiation on Monday just a a precaution.
Why I'm I telling you all this as it sounds like bad news. It really is not. I am 41 and I have two little boys 5&7 and each and everyday I get up and carry on the day with so much strength because of them. I will defy (not sure thats spelled right) all odds. I am stubborn and not willing to ever give up. I see each day as a true blessing and try hard not to complain about silly things that I once did. I stop to smell the flowers, literally, and each day I feel so grateful to be here.
I do have pelvic pain always due to so much radiation in the same spot but I take advil and try not to think of it. My mind too is a big problem. This disease affects your brain just as much but the more I stay positive the better I feel. I do have breakdowns and I let that happen because tears are good too. I find the more I tell myself it is what it is and I will take it one day at a time this really helps. If I want to do something I do it now and don't wait. You really start to live in the moment.
Peace and love.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Friedaf...it's amazing that you have been through so much, yet remain so upbeat. You are an amazing woman! My children, although all grown, were my source of inspiration. My CA was also inoperable due to lymphatic extent and attachment to bladder...10 chemo, 33 external radiation, 5 internal radiation and not looking forward to any of it again. I'm a little scared at this time though...sudden onset of extreme fatigue, bone pain in pelvic area, and bladder pain have all got me worried. I was trying my best to ignore all this, thinking it just the effects of getting older, but finally gave up and called the doc. I'm scheduled tomorrow to have blood drawn, then...?
I, too, have literally spent more time to stop and smell the flowers. I spent alot of energy attempting to plant my garden yesterday...gonna take a bit longer than anticipated because I have to stop and rest so often, but I keep plugging on! Watching new plants come through the soil...flowers peeking out from under the mulch...it's such a joy to me. Last summer I wasn't able to get my hands in the dirt and missed all this. I focus on keeping the bird feeders filled...the color of the birds seem so much brighter this year for some reason. I'm finding myself doing more things that I really want to do, as long as it doesn't involve to much money. That I am hording terribly after coming so close to losing everything.

kty
Posts: 7
Joined: May 2009

Friedaf you are an extraordinary person. From all you have experienced to stay so positive, you are in inspiration to all of us out here. You definitely have a lot to live for and your family is lucky to have someone able to focus on all the positive in life. Keep up the faith you deserve to win the battle.

I am trying every day to be positive about my cancer experience and pray all of us have the strength to battle this disease at every turn. My children are grown, but they, my Mother and sisters along with my wonderful husband are what kept me battling through the treatments. My Father passed away 3 weeks after my final treatment. The best thing was I had enough strength to travel home and have him see I was recovering so he could pass in peace. His face lit up the moment he saw me and that was worth every struggle.

Friedaf
Posts: 6
Joined: May 2009

Well ladies, thank you for your words of hope!! We all deserve to beat this! Becky I hope and pray that everything goes well with you blood test. Keep us posted. I always think the pain I have is some kind of new cancer and it drives me nuts. I too will be getting checked for the pain to make sure it is not anything serious.
Better get back to bed. Have a happy day!!

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

No report back yet from the blood draw and my radiology oncologist scheduled me for a CT Friday morning...waiting, my favorite part of this game!
It was suggested to me yesterday that I take something for pain before I went to bed, really dislike taking pain meds, but I did and slept wonderfully and woke up totally refreshed this am with no pain. I could get used to this! And I don't feel like I could crawl right back into bed...maybe that has something to do with sleeping 18 out of the last 24 hours?

kty
Posts: 7
Joined: May 2009

beckyracn....Here is hoping for a clear CT scan Friday. I do agree waiting is the worst. Everything that goes through your head is more negative than positive. It is hard not to worry about new pains, but I was told not to automatically think cancer was back from every new ache and pain. Don't know if that helps but I try to use that advice whenever I am waiting for results of all testing. Again, all positive thoughts are headed your direction. Good Luck on Friday! By the way, a good nights rest is so rejuvinating...those nights don't come often enough.

Friedaf
Posts: 6
Joined: May 2009

Hello! I too hope everything went well on Friday. I see my radioligist tomorrow and will ask about a CT or MRI scan as well. It's hard not to think of the pain but I'm glad you took pain meds and got a good night sleep. It's really important to sleep so sometimes you just have to go with it. I hate taking pain meds too. I never took anything before all this, not even an asprin. Now it seems like I'm always swallowing something.
Stay strong! Peace and love.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Well, the report is back. No CA or mets showing up, but a small collection of fluid has started in my lower abdomen. Reason? "We'll follow up in 5-6 months. Have a nice weekend." I was totally frustrated after this conversation. The fluid wasn't there 2 1/2 months ago and there's no concern? And I have NO faith in the CT. When I was first diagnosed, the CT only showed the cervical mass. It wasn't until the surgeon opened me up that the mets appeared. They even did a CT after surgery/prior to starting treatments and the mets didn't show up...makes me nervous as hell! Then I called about my blood work, because they had never called me and "everything is still running low, but it's within the normal range of your lows." And another "Have a nice weekend." So...what about this new onset exasperating fatigue? The nausea/vomiting? "Do you need any scripts?" Ahhhhhhhhhhhhhhhhh....I was so depressed after these conversations that I wished I'd never had any treatments! I think what bothers me the most is no one really explained up front what 'quality of life' really meant after treatments. Their attitude is 'you should be greatful to still be alive'. Don't miss understand me...I am greatful for my good days...far and few between, but life will never be what it once was. I am broken and always will be...that's a fact that's hard to face for me. I was always the doer and it's really hard to ask for help...but I'm learning that it's necessary these days. And if it doesn't get done today...there's always tomorrow. Doesn't mean I have to like it...just need to learn not to feel quilty! And I know there's a pill for that cause they've offered to write the script many times, but damn it! I have a real reason to feel the way I do and I don't want any more pills! I could run my own pharmacy now!! So, today is a new day, the sun is shining, no nausea or vomiting yet (coffee is definitely better the first time around)...time to get ready for a 10 hour day at work...and life is good. Thanks everyone for letting me vent...and knowing I'm not out here alone...broken but breathing.

Alley76
Posts: 5
Joined: May 2009

I hear you! Frustration levels at the complete lack of understanding which can be shown by staff and others who have never experienced a life changing illness can definitely be high at times.
I remember going to the doctor after having my first biopsy, and being told " you can't tell if you have cancer from apap smear,you will have to have a biopsy!". I politely rquested he actually READ the piece of paper in front of him before he further humiliated himself! Then i changed doctors!!!
Asking for help was also one of my major issues, as I was always the "helper". I still find it really difficult to ask for help.
recently i have begun to experience extreme fatigue, nausea, vomiting, changed bowel motions and have gone to the doctor for some tests. I am still awaiting the results.
Keep your spirit up as best you can, although I too understand that at times a good kick and scream is required!

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Alley,
Are you still in treatment? If not, how long since your last treatment? Your symptoms sound so much like mine and my last treatment was Aug. '08. I've been told it's post-radiatin symptoms...they could get worse or better with time...no one knows.

Friedaf
Posts: 6
Joined: May 2009

I'm glad to hear about your ct Becky, and I do understand your frustration of why still the pain and fatigue etc. Can you get a PET scan. It shows cancer anywhere it could possibly be. I have had quite a few of them. Where do you live? I'm in Vancouver BC and this is standard protocol for cervical cancer out here.
I hate all the after effects I have too. I totally get where you're coming from. I still and glad I had all the treatment or I wouldn't be here right now but I am pissed at the pain and discomfort and hate that I don't feel that womanly anymore. I'm only 40 but feel like 70 in more ways then one. I just count my blessings and pray for one more day with my boys and try to not think about the pain I have. My radiologist I saw on Monday said it may be my uterus holding fluid because my cervix doesn't have a hole anymore due to scar tissue. I will see a obgyn oncologist on the 15th and she will determine what to do. Maybe a D&C he said could help. It's not cancer so that is very good.
I hope tomorrow will be a better day for you :-)

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Friedaf,
I wish you good luck on your up coming appt. with your obgyn. Is it scar tissue blocking your cervix? That stuff grows like wild fire! I'm still amazed at how positive you stay. People tell me my positive attitude will keep me going...if they only knew what was really going through my head! I did have a PET scan back in Dec., which verified me being in remission after treatments, but they had to fight my insurance company to get that one...hence no further ones. I plan to demand they get approval for them in the future...the CT is a waste of my/their time and money. It just scares me that my CA developed and grew very rapidly and if/when it comes back...it will be just as aggressive. I guess what's really frustrating me at this point is, I'm an RN, and had worked side by side with my docs with other patients for years and had the utmost respect for them, but now that I'm one of their patients...their 'get over it, your in remission, your lucky to be alive, deal with the side effects' attitude just bowls me over.
Keep that positive attitude and have a great day with your boys!

kty
Posts: 7
Joined: May 2009

Beckyracn & Friedaf,

I wish you both good luck with all your problems and tests right now. I am so sorry you are experiencing so many physical problems even this amount of time after your treatments. It makes me realize just how lucky I am right now. Physically I feel very good and only struggle with the mental aspect. I will do my best to realize how blessed I really am. I don't have my next follow up visit until late June with my gyn oncologist. Keep the posts coming and know I am thinking about your testing and hoping for all clear results. Don't ever hesitate to really push and stand up for your medical rights. If you don't fight for your care no one else will. Don't let the system beat you down. You deserve everything that can be done to make sure you survive to enjoy your families. Take care!

bunnie1
Posts: 21
Joined: Feb 2009

Ladies, God has a plan for all of us and cancer was one of them. When I was diagnosed in May 2008, I never asked "Why me?", but now I'm so thankful,because I survived and I'm glad it was me instead my nieces. Yes I have pain here and there, I feel bloated everyday, but I'm alive. Now I'm in remission. I just pray it never comes back, because I don't want my family to go thru this again. I experienced a lot of the same side effects you ladies mentioned, I too had surgery,chemo, and radiation, but hang in there you will be okay. Remember God never gives us what we can't handle. Some of you are still going thru treatments just stay positive and you will beat it. Take care

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Like you bunnie, when I was diagnosed, I never asked "Why me?" In my line of work I'd seen so many others in worse positions. I do openly admit that I am greatful for having found this site. I don't feel so alone dealing with all that I've been through/going through...what the future holds. Just knowing that at any given moment I can bop in here and put down whatever thoughts are rambling through my brain, scrambled as it is, has helped lift my spirits. I'm sorry that we've all had to go through what we are, but thank you all for being here. Have a great day everyone!

Friedaf
Posts: 6
Joined: May 2009

I too want to say I'm glad to have found this site. Family and friends don't quite get where you are coming from when you are dealing with the big "C". I push my doctors all the time to get what I want/need and lucky for me it's been working. Here our medical plan pays for everything so I am very grateful for that. I will be done my latest radiation next Monday which is great. I feel fantastic! I'm very busy with my sons baseball games and will be walking for childhood cancers in the HBC Childrun on Sunday with my boys.
I did say "why me" when I was first diagnosed but soon realized rather me then my kids or any child. I have had 41 great years, got to be a mother, wife, great job, good friends and family....truly blessed to have had all this and knowing that some children never get to have any of it......how could I possibly complain? I will never give up the fight cuz I want another 41years!!!!! Goodnight all. Peace and love to you all.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

It's good to hear that you've tolerated your radiation treatments so well Friedaf and they will soon be over...your an enigma.
I had two days without nausea, vomiting, and my bowels worked as if normal...YEAH!!!!!!!!! What more could one ask for!

Friedaf
Posts: 6
Joined: May 2009

OK......so I have a question for anyone of you ladies. Are any of you juicing, eating organic, no sugar and all that stuff? I find it super hard to cut out sugar, coffee and all the good stuff in life and I just wanted to know if any of you feel the same or have any suggestions to help me with it.

I'm glad you weren't sick for the last two days Becky. Lets hope it stays that way for you!!

kty
Posts: 7
Joined: May 2009

Friedaf,

So glad you are about to finish your treatments! If you have been able to eat anything at all while undergoing your treatments is really lucky in my view. The entire time I was undergoing treatment and for about 2 weeks after I was still nauseas and vomitting on a very regular basis. Food was not much of my daily routine for over 2 months. So, when I could eat I was told to eat what I could but to stay away from meat and introduce that very slowly in my diet and to stay fairly bland. Eggs for protein and anything mild. It took me weeks to gain any strength and stamina back. Now that I have been finished with treatments since September I started eating whatever tasted good in October It took time for my taste buds to get back to normal. I have not given up the things I love. Chocolate, etc. I don't do anything to excess but continue to enjoy the things that make me happy. I am not the best person to give diet advice because I don't like fruits and veggies. They are a much smaller part of my diet than is really recommended by anyone. I try to get proper physical excercise on a 5 day a week basis. I want to be healthy and keep the cancer at bay but I want to enjoy my life as well. Once again thanks to all of you for being on this site. It means so much to communicate with folks going through the same experiences. Happy week to everyone! Enjoy your families!

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

I do eat a lot of organic, always have, but I have not cut out all the things I enjoy (like coffee in the am with sugar). I've never been a real junk food eater...don't eat fastfood. I've read a lot on the subject and it all makes sense, but at this point in my life...if it looks good, sounds good, ... I eat it! Life is to short not to enjoy!

bunnie1
Posts: 21
Joined: Feb 2009

Hello ladies, first let me talk about why I didn't ask "why me?" during my treatments of radiation I saw a mother with her little daughter who had cancer, she was about 2 or 3 years old. I felt so bad for her, because I knew she wished it was her instead of her daughter. So I rather go through cancer then an innocent child, who doesn't understand what is going on. I don't eat organic it's too expensive. I'm back to eating anything I like, specially spicy foods,coffee. I don't eat red meat or pork, which I read it's not good for you. I eat tons of veggies and fruits. I read sugar in not bad for you, it doesn't feed the cancer like I had read before. I enjoy sweets and I love to bake so go figure. I gained all my weight back in two months (20lbs) I was eating 3 meals a day. When the treatments are over, you'll be able to eat like before(foods you enjoyed), during radiation treatments I can not handle the smell of coffee, and it was something I had every morning before. Now I'm back to having a cup every morning it's great. Remember to eat healthy foods as much as possible,because your body does need everything it lost during treatments. Take care and happy eating...

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Well Ladies...I had six days of bliss (no nausea or vomiting)! But, alas, it came back to haunt me today :( After some alone time with King Porcelain, I took another Zofran and laid down for a bit. When I got up, my husband asked how I was feeling..."Great! Let's go get ice cream while I think it may agree." He gave me the strangest look...I just laughed. And off to the ice cream store we went. I ordered a banana split...YES! My husband said, "You know your never going to eat all that." And I answered, "I know, but it sure felt good ordering it!" So, he just ordered himself a small ice cream knowing full well that he was going to be offered three quarters of mine. Isn't love wonderful! And since that stayed down, I do believe I will drag my husband to the car races tonight :) Just wondering if subs and beer would stay down as well as the ice cream did? Gotta go for it! I do so love life and all that summer has to offer!!!

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