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Are there any other MMMT survivors out there?

1975goatgirl
Posts: 1
Joined: Nov 2009

I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've never talked to anyone else with it.

My email is kisses4fluffies@yahoo.com

Thank you,

Carrie

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Songflower
Posts: 632
Joined: Apr 2009

Could you spell out MMMT. I don't think most of usknow what that means.

Diane

thank you
Posts: 77
Joined: Jun 2009

Just checked on the internet, it is: Malignant Mixed Mullerian tumor or carcinosarcoma. I decided to post here when I noticed your age - I am 34 years old. My mom is diagnosed with uterine cancer - endometrial, and I come to this site to get advice from wonderful women.
Also I posted to celebrate with you, 3.5years of remission, you are cured!!
I wish you the best, even if you don't have an answer from somebody with the same type of cancer, you will get a lot of help in this site, or I think you will give a lot of help since you are a SURVIVOR!!!!!

cleo
Posts: 122
Joined: Sep 2009

I also have the above. Two years well now. Am twice your age however!! Did you get other responses?

nomadic_spirit
Posts: 1
Joined: Feb 2010

Hi Carrie,

My sister was just diagnosed with stage 3B MMMT & she is 38 years old. The doctor said that the prognosis is not good, but then I read your story. Can you please tell me more about your story? I need to let my sister know that she can fight this and survive.

Thank you.

Deborah

jobeck52
Posts: 1
Joined: Apr 2010

Hi,
I was diagnosed in Nov. of 2007 with stage 3 MMMT. I went through surgery, chemo and radiation. I was told I had only a 20% change of it coming back. So far so good. I am 54 now. The doctor said if I went 3 years without a reoccurance it wouldn't come back. I have not met or talked with anyone else with this cancer. I have been afraid until now to even look at message boards about it. When I was first diagnosed I read very upsetting stuff on the internet. My doctor said a lot of the studies talked about were 10 years old and treatment has changed. Although she also said there wasn't much information about research and new findings out there. I hope your sister is getting all three types of treatment.

Robin

sue K
Posts: 18
Joined: Apr 2010

Hi
I was diagnosed with MMMT last May, and it is so good to 'meet' with others who have the same cancer. I had radical hysterectomy, followed by chemo and radiotherapy. I am doing OK but have a lot of pain, especially in my back and in my legs. I meet with my oncologist tomorrow for results of scans, and am hoping for positive results.
By the way, I realise that this is an American website, but it is the only one that I've found with a forum dealing with issues that relate to me. I am in Scotland, but the cancer is the same!
good luck to you all
sue

cleo
Posts: 122
Joined: Sep 2009

Sue...I have to second your comment. I am in NZ and have gained a lot of knowledge and common sense from this site. I did not bother with the internet after the initial look as if this is so rare...little or no research done....how do they come up with data?? From negatives only - not the positives like ourselves. Diagnosed Stage 4 in August 2007 my scans have been unchanged and I intend to stay that way. Neuropathy can result from the radiotherapy and is painful. Celia

nempark
Posts: 595
Joined: Apr 2010

I would love to have an update on your progress. I did do some research Wow!!!!! Can they be more negative. From August 2007 to now is a long time. You are cured. Please post. I was stage 1a and is now six months in remission and like all the fine ladies on this site we will remain in remission for ever. Love June

Wonderland
Posts: 2
Joined: May 2010

HI
I was diagnosed in August of 2009. Underwent a complete hysterectomy, 3 cycles of chemo [Taxol and Carboplatin], [Sep/Oct]; external radiation [Nov- Dec] for 25 days; internal radiation for 3 days [Dec]. I had a pre-chemo appointment in January to begin the last 3 cycles of chemo, the docs discovered that the cancer had recurred and actually spread to one of my lungs. I was told at the start that this is a rare agressive type of cancer and that it would probably recur. I just did not think it would be so quickly, even before treatment was finished. Needeless to say, my prognosis went from poor to very bad.

In January I started a new chemo protocol of Ifosfamide and Taxol. After the first 3 treatments the tumor had shrunk by 2/3. I have one more treatment left and then another CT scan. Has anyone else been treated with Ifosfamide?

nempark
Posts: 595
Joined: Apr 2010

Hi Wonderland: Please give us an update on your progress. I was diagnosed around the same time as you. 6 sessions of carbo/taxol no radiation. I was a stage 1A. This is a rare cancer and very aggressive. But medicine is great now and we can all beat this monster. Looking forward to your post. Be well!!! June
T

RoseyR
Posts: 464
Joined: Feb 2011

Dear June,

Because radiation is usually prescribed, along with chemo, for MMMT, am wondering why you chose (or were prescribed) no radiation, especially since you seem to be doing well.

Best,
RoseyR

nempark
Posts: 595
Joined: Apr 2010

Check further down on the thread I did a new message for you. Because I know sometimes it is difficult to find the response. Be well June

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

I had full hysterectomy in November (2011) and have had no radiation or Chemo - from what I've read I might just as well not! I feel fit as a fiddle - even though I had breast cancer and a mastectomy in March last year (also 2011). The two cancers are unrelated - fortunately. I am in London, England. Hope our doctors and oncs know as much as those in the USA - they should do - they can all read and write! No-one seems to be able to agree on the likelihood of recurrence of the Carcinosarcoma/MMMT. So why should I put myself through the trauma of Chemo and radiation, with probable lasting ill effects when there may be no need, or possibly no effect on the likelihood of prolonging my life. Any views? Joan

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Fayard
Posts: 343
Joined: May 2011

Hi Joan,

I was wondering how you were doing since surgery.

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

I'm so sorry, been a bit busy with surgery, treatment, and on the MMMT Yahoo group mostly.  Below is my 'potted history'

Didn't go quite as well as planned, but I'm OK again now.  Next scan mid March.   I wouldn't have had the chemo without the lung metastases, and didn't have radiation to the pelvic region.  I know what it can be like after radiation - and think how many CT scans we have and how much radiation we get with those.........

I guess I'm still in denial....... My hair is already growing back slightly - but not the right colour!!!

Good luck and love......

Breast CA, March 2011, mastectomy and radiation (chemo not needed)
- Started and stopped Arimidex - aches and pains
MMMT diagnosed November 2011, after hysterectomy.
MMMT secondaries in lung, August, September 2012, segmentectomy
Chemo - carboplatin & Abraxane (NAB-paclitaxel) , started Oct. 2012
- Changed to Paclitaxel, due to allergy, Dec 2012
Chemo stopped after Feb 1st - Had five carboplatins out of six - and about
ten taxols out of 18 due to low blood counts, high fever (104!) and FLU!!!

Next scan mid March. 

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

I ask the same things.  My firends are upset with me since I do not want to do these things.  I am 73.

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

I am back after having external radiation and then for the internal for my MMMT.  I have a dull pain, spasms, gas pains etc and am slighly uncomfortable but I don't think It has gone to the lungs at all but I think it has gone to the other areas abdominally.  I had absolutely no symptoms like bleeding or pain.  My GYN doc asked me if I knew I had blood in my Uterus and I told her no.  I am incontinent and would most likely not notice it unless there is a large amount of bleeding.  I did not even see any pink tingued stuff.  So since Apr 7th when I was told the results of the D & C, I have done all the reasurch I can find. Nothing is great and it is all so negitive.  I am not going to give up but It is hard to stay positive with this one.  Because of my other health issues I did not do surgery.  I knew that if I did I would not come off that table alive and the feeling was so strong I decided I better listen to myself. I only had radiation figuring I might as well do that but try to limit the cutting on my body and just die gracefully.  Not exactly how I want to say that but do not know quite how to say what I mean.  I really believe if I get surgeries over and over it will shorten my life much more than if I just kind of coast.  Oh and I did not do any Chemo either.  So will come back here and let you kow how I am doing and if I am still alive occassionly.  I just did the brach therapy or brachy therapy.  I have seen it spelled both ways so am not sure exactly what is the correct spelling, but who cares really.  I read everything I can get my hands on and hope that maybe there will be better news but not happening yet.  My prayers for all of you and also for me.  God knows what He is doing so I give it all to him. 

nempark
Posts: 595
Joined: Apr 2010

Hi Sue: I am six months post op and in remission. Its only this week I found out that the cancer was MMMt. I think the leg and back pain is normal, I also had those symptoms but they are now going away three months after conclusion of chemo. It is an American website and you will find lots of love and really good comforting thoughts. It is through this website that I have learned to ask doctors pertinent questions. I hope the treatment over there in Scotland is as good as here in the USA. Please give us an update on how you are doing. Love and best wishes. June.

sue K
Posts: 18
Joined: Apr 2010

Hi June
There are 2 threads with the similar discussions on MMMT. I did reply to you on the other page- I don't want you to think that I had ignored you!
I am doing ok. I am free of the cancer for now, and am so very thankful for that. I am still having a lot of pains - all similar to fibromyalgia my doc says - so I keep taking the pills and am glad to be alive.
My treatment here in Scotland has been wonderful, but no-one is very knowledgeable about MMMT.
I hope you are getting on ok. This is a wonderful website, and I am so thankful to have found it. It's such a comfort to hear from others in similar situations, even though you are so far away.
Love, and God bless you,
Sue

nempark
Posts: 595
Joined: Apr 2010

Robin, you are cured, its almost three years. I am 60 and scared to death with this rare cancer. Good the studies are really old and so many people have survived this. We here will all have the same good fortune. I send you good wishes. Please keep in touch. Is there any advice you can give me in terms of diet or herbs? I would greatly appreciate.

nempark
Posts: 595
Joined: Apr 2010

Hi Deborah: It is now eight months since my surgery. Stage 1a. I had complete Hyst. and six sessions of carbo/tax. only in June that I found out that it was MMMT. I read your post about your sister and I am really wondering how she is doing. I have also read these other posts and responded to them but no one had replied to me. I e-mailed Carrie and also wrote to her on the site but still no answer. I would greatly appreciate it if you can give me some information on your sister's progress and some tips. Be well June

Angelasmom2
Posts: 146
Joined: Jul 2010

What is MMMT?

nempark
Posts: 595
Joined: Apr 2010

MMMT -- malignant mixed mullerian tumor---a very rare aggressive cancer.

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

Malignant Mixed Muellerian Tumor

monik_lisett's picture
monik_lisett
Posts: 8
Joined: May 2010

Congratulations, its so good to hear you beat this monster..I am personally very scared for my mom. She was recently diagnosed with MMMT the end of March 2010 and 2 weeks ago had a complete hysterectomy. On saturday we spoke to her doctor and all the pathology reports came back clear of any cancer spread, the tumor was confined to the uterus. Doctor mentioned having treatment such as radiation/chemo for prevention..So we were all so excited to hear the great news... But now I'm so scared of recurrence since this cancer is very aggressive. I read some stories last night of Stage1 recurrence and it really scared me. I'm so glad to hear although yours had metastasized you were still able to beat it..
-Monique

nempark
Posts: 595
Joined: Apr 2010

Hi Monique: I was diagnosed in October 2009. Stage 1a in the endometrium. Total hysto, omentom, lymph nodes and the works. I went to the doc on Tuesday and its only then I found out that it was MMMT, then foolishly went home and did some research. I was scared to death. But it is comforting to know that Carrie managed to beat a stage 3 for 3-1/2 years. So can your mom and me. Don't be afraid. It's part of life's circle and life goes on. Be well and please keep us informed about mom's progress. I send you and mom lots of comfort. June.

monik_lisett's picture
monik_lisett
Posts: 8
Joined: May 2010

Hi June, Thank you for sharing your story. I hadn't found someone with stage 1A. The ones I read were stage 1B or C.. My mom already started her treatment.She's having 5 internal radiation treatments and will begin chemo Taxol/Carbo in 2weeks for 6 cycles. It is comforting to read stories like Carrie's, but the internet is really full of negative info about this type of cancer.I am greatful however that it was found on time and is being taken care of. She's being treated at MDAnderson, of what I hear its one of the best cancer centers so she's in good hands. With Gods help we've been able to endure this, my mom has truly been strong since the beginning, and I hope and ask for your prayers she'll keep her strength during her chemo treatments. Hope you continue to do well, God Bless!

CMadison
Posts: 2
Joined: Jul 2010

I wanted to write to you after seeing your post about your Mom and her journey. Mine is very similar. I am also stage 1A,had a complete hysterectomy 4 weeks ago. I will have 2 radiation treatments as a precaution for reoccurrence, and will then be treated with taxol/carbo. Even though I am 1A, I had lyphovascular invasion inside the uterus. the doctor feels with this type of cancer, I cannot take any chances of some escape of cells out of the uterus. The chemo really scares me. Wondering how your Mom is doing on the carbo/taxel? Wishing her the best and, like me, I'm sure you're all hoping it will all be over after these chemo treatments.

CMadison

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

Are you in AZ or our Mom?  If so would like to talk to your mom if she is able.

nempark
Posts: 595
Joined: Apr 2010

I sent you an e-mail. Hope you are well. I am anxiously awaiting your reply. June

praying4u
Posts: 1
Joined: Jul 2010

My grandmom was just diagnosed today with this rare cancer. We just lost my granddad 2 1/2 months ago and still recovering from that. I was so happy to find this site where people have positive stories. Remaining prayerful!

nempark
Posts: 595
Joined: Apr 2010

Hi: How old is grandma? So sorry about grandpa. How is grandma taking that loss. Keep an eye on her she might be really missing him. Please let us know what treatment she will be taking and what stage she is. My prayers go out to you and the family. June

Cynthia7
Posts: 3
Joined: Jun 2010

Am 71 and diagnosed in April with Stage 4B MMMT. Had complete hysterectomy & now undergoing chemo. Treatment is Taxol & Carboplatin. After 2nd chemo treatment CA 125 test went from 330 to 87 so apparently it is working and ascites seems to be drying up as well. Having problems keeping white cell count up but other than that doing ok.

All the information I read about MMMT is so negative & discouraging it is very helpful to read about those who have the same diagnosis & are doing well.

Let me know how doctors decide to treat your grandmother.

nempark
Posts: 595
Joined: Apr 2010

I am so glad to hear from someone who HAD the same condition as me. I have had surgery in November 2009 and its only in June of this year that I really found out what the cancer was. I tried several times to contact the sisters but only heard from Sue in NZ. I have been diagnosed with Stage 1A and had the same treatment as yours. When I found out that the Cancer was MMMT I googled it and much to my surprise was very disappointed with the prognosis. So I have decided that I have been treated and I feel well except for occasional depression. So I am not doing any reasearch any more. I am trying very hard to keep a decent diet. My first Ct and chest xray was negative so I am ned. I was told by my chemo doc that she cannot use ca125 as a marker.
I am not going to let this monster rule my life I have resolved to fight it and keep positive and live my live as I did before. I do hope you are keeping positive, you do sound great. Thanks for sharing your story. May God bless you and give you the strength and courage to continue living a normal life again because you have been treated. Hugs. June. looking forward to hearing from you and others out there.

Cynthia7
Posts: 3
Joined: Jun 2010

Thanks for your reply. Curious as to why your Dr. could not use the ca-125 as a marker. My numbers keep going down, yesterday it was 30.9 from 87, & Dr. was very pleased. I just had my 3rd chemo treatment & have 2 more. Possibly the fact that you were stage 1A & I am 4B makes a difference. Great news that your scan & x-ray were negative & I would think that your early diagnosis will make a huge difference in your prognosis.

You are right about the internet. It is a wonderful tool but so difficult to filter all the information. Every time I look up a side effect etc. I become very upset & it can be depressing.

All the best to you & keep up the good diet; it does make a difference.

nempark
Posts: 595
Joined: Apr 2010

Cynthia, I am so glad to hear from you and how well you are doing. I have been looking on the board for responses, so far I have heard from SueK, Karma now you. I would love to know how Carrie is doing since she is a 3-1/2 year survivor and also the other ladies on this thread. Thank you again for your response. It seems that you are doing fine. Please try to avoid the internet, its all doom and Gloom. So keep yourself free from the negatives. I know it is easier said than done. Yes, I am doing a lot of herbs and is really watching my diet but the weight is not budging. Be well my love and before you know it the chemo will be over. I never thought that I would see hair again, but it is growing nicely. Thank God!! Please try to keep in touch more often. Best wishes and best of all good health to you!!! June

Cynthia7
Posts: 3
Joined: Jun 2010

Thanks for your reply. Good to hear your hair is growing back; I am terrified that mine won't, which is ridiculous since everyone says it will, but can't shake the thought. I am having a problem with neuropathy. Hopefully you are not experiencing that side effect but would love to hear from others who may be dealing with it. Sounds as if you are doing well. Keep up the healthy diet and over time the weight will come off. All the best!

aochime
Posts: 1
Joined: Sep 2010

Hello,

My mom was diagnosed with MMMT stage 3 and we are very scared and not really sure what to do. My sister told me to do some research and find other women in her age group that are beating this. I read your comments and if its possible, we would like to communicate with you. You can reach me at aochime@yahoo.com

Thank you,

Anthony

nempark
Posts: 595
Joined: Apr 2010

Please let us know how you are doing. June

Angelasmom2
Posts: 146
Joined: Jul 2010

My daughter had cancer surgery July 8th on her 38th birthday. The lab report on the tissue after the surgery was undifferentiated/endometrioid. Is that anything like what you are talking about? The cancer was 3c.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Don't think that is same as what your daughter shows on her pathology.

MMMT -- malignant mixed mullerian tumor. This is what mine shows with carcinosarcoma in parenthesis. My doc told me yes it's aggressive, but a lot of other cancers are too and people are dong quite well. Honestly, I don't think about it as do what I can with my eating, exercise and vitamins. Don't have time to worry as enjoying life, but great to read about many others who are long time survivors....go girls!!!

Jan

AndyCN
Posts: 2
Joined: Aug 2010

my mom was diagnosed MMMT 1B Feb this year. Reoccurrance was discovered in June and now the tumor has grown very big. She did one round of Ifosfamide and Taxol 2 weeks ago but it's not working out. Wondering if anyone else is in similar situation and knows if any other drug might work?

Was searching online and looks like Avastin may help treat MMMT... Any info is appreciated..

nempark
Posts: 595
Joined: Apr 2010

Hi:Andy I was diagnosed in October 2009 with MMMT Stage 1a. I had total hyst and six sessions of carb/taxol. In remission. I have been using a lot of green tea, ginger, lemons, tumeric and black pepper and also lots of berry juices.I am so sorry that mom had a reocurrence. I am sure the Docs will recommend something that will work for her. May God bless you and mom and help you guys to make wise decisions. Please keep us informed.

dtrmnd2live
Posts: 4
Joined: Sep 2010

Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

nempark
Posts: 595
Joined: Apr 2010

I just wrote you my entire journey but lost it. So I am too tired to write it over again. Real quick, DO NOT GO ON THE INTERNET!!!! I will write you soon. If you would like, because I know how devastated you are you can call me at 201-488-3297 I was there exactly where you are right now. I know how you and your family are feeling. Be well.

sandy_b
Posts: 1
Joined: Jun 2010

Aloha dtrmnd2live! I was diagnosed with 3b MMMT on St. Patrick's Day, 2010. Complete hysterectomy the day after that, and Chemo started on 26 Apr 2010 - for 6 treatments (three weeks apart) which was completed on 23 Aug 2010. I am 51 yrs old. This is a wonderful site, as it makes me feel less alone.

When my hysterectomy was done, they said it didn't spread to my lymphnodes, but there was something near my colon. My Gyn/Oncologist said this type of cancer used to be treated with strictly radiation, then they went for radiation & chemotherapy, and found that chemo worked better than radiation. For the most part, my Chemo treatments were manageable, the fatigue, nausea and loss of appetite became my worst challenges. Treatment was deferred twice because of low blood counts.

I went for my follow-up on 10 Sept 2010 - blood counts are still low, CT scan will follow sometime this month, then my oncologist tells me he is referring me to a Radiology Oncologist for a 'Consultation'. Silly me, thought I could get away with only chemo. I am told that the worst is over (the chemo), but we'll see. My Oncologist said that getting the radiation will not extend my life expectancy, that there will still be a five year window so I am wondering why should I get the radiation.

At any rate, please get your second opinion and do what is best for you. You mention your daughter - I believe since she found this site and has shared it with you, she will be great support for you.

Above all else, HANG IN THERE...they say this is a rare cancer, but there are so many of us out here. I tell myself that since I have something that is so 'rare', I should be special enough to beat this.

caregiveria
Posts: 2
Joined: Sep 2010

My wife has been figthing this for 3 years, she first had stage 3c uterine cancer and had a total hysto. Spelling will not be good so please bare with me. The cancer was 50% thru here urterus and the washing was full of cancer and a lymphnode or two were bad. Then after chemo and radation. Then just prior to here 3 year mark after several months of extreme pain she had a 6-8 cm (grapefruit size) tumor up by her kidney and IVA (arota vein) that was removed with only some sand grane sized pieces on the arota as the DR said it could not be removed. She had 4 rounds of Iflex/something else in the hospital for 4-5 days at a time. She is now getting ready to do 25-28 rounds of radation. They said this time the tumor was mmmt and serious but very treatable. Most of what I read does not sound good but she is a fighter.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I am so sorry to hear about your wife, but I am glad that you found this site. Wonderful women here who are so supportive and so willing to share their experiences and ideas!

It sounds like your wife has been through a lot and am praying that her radiation is just what she needs to knock off those cancer cells! The radiation is not so bad....I had 28 rounds and did find that as the weeks wore on my fatigue was more intense. Also, some GI disturbance but let the radiologist or the nurse know if there are any problems and they can order something to make this better.

Please keep us posted on how she is doing....and am glad to hear she is a fighter. That will go a long way on her road to recovery!

Karen

DrienneB
Posts: 11
Joined: Aug 2013

Hi Sandy,

How are you doing? I hope you're THRIVING!!

I'm new to this, but a few months ago (year 2013) was the age that you were when you were diagnosed. I was 51 (this past April)  and am now 52, and also staged at 3B. After my hysterectomy, it was known that my tumor had almost fully invaded the myemetrial tissue layer and I also had a pelvic washing that was positive for cancer cells. Clear CT scans and visible lymph node action. I'm just finishing my carbo/taxol regime and am also considering radiation. My doctors are 2 "for" and 2 "against" radiation. LOL! I'm wondering what you decided about that!

Thanks,

jane

kriscan
Posts: 5
Joined: Sep 2010

I have also been recently diagnosed with MMMT. I am 46 and had my hysterectomy/oophorectemy on 7/8/10. Post surgery,I was diagnosed with Stage II carcinosarcoma, my pelvic lymph nodes that were checked all came back negative but my pelvic washings were positive for some atypical cells. My gynocological/oncologist surgeon, my radiation oncologist, & my medical oncologist consulted each other and their associates at Unniversity of Penn Oncology and their recommended treatment for me has been 4 rounds of Chemo (ifosfamide & taxol) to be followed by 5 weeks of external, pelvic radiation and ending with 3 internal radiation treatments.

I too went to the internet for information and was not happy with what I found there. I confronted my doctors with what I found and they stated much of the internet info is old and has been limited by the rarity of this type of cancer. My doctors have been encouraging and have insisted that the treatment plan they have designed for me is to prevent recurrence and to cure me. I have just completed my 3rd round of chemo and I have been very fortunate that I have experiencecd minimal side effects and have been able to continue a, more or less, normal routine of family life and work between my treatments.

I hope some of this information is helpful. Like you, I am just starting this battle with cancer and I too, am looking for all the allies and ammunition I can get to win. Kris

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