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Uterine cancer metastasized to lung - looking for others to talk to with similar condition

missbabsonmars's picture
missbabsonmars
Posts: 29
Joined: Jun 2010

My uterine cancer metastasized to my lungs. I went in for bronchitis; otherwise I would still be walking around with it spreading by the day, as I am in otherwise excellent health. I start chemo. on Friday. Just wanted to enter the forum and be part of the community. I have a fantastic support team with family and friends but would like to connect with other survivors going through this or who have been through this.

Thanks,
Babs in sacramento, Ca

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi - my uterine cancer also spread to my lungs. Chemo was incredible - it zapped the lung cancer - still had tumor in uterus - shrunk with radiation. Still going strong. Good luck with the chemo! I think it will work.
Mia

DaughterNo1's picture
DaughterNo1
Posts: 14
Joined: Apr 2009

Mia, if you don't mind me asking, what type of chemo did you receive? My year old mom has UPSC, no sign of it anywhere except her PET scan 2 weeks ago showed small spots in her left and right lungs and something on her spine which we hope is just bone degeneration.

Last May a 9mm spot on her left lung was removed and she was given Doxil once a month for 6 months. We are meeting with her pulmonary surgeon tomorrow to discuss the new lung spots and she's also getting a spinal MRI. I was told that lung metastasis is common with UPSC but the chemo would get it.

It seems that each doctor uses a different drug used for the same areas with varying degrees of effectivness. The more info we get, the more pro active we can be.

Thanks and best of luck to everyone.

jamay
Posts: 3
Joined: Sep 2009

I have a Bronchoscopy with argon lazer Friday for mets in my right lung bronchi then on to an oncologist. Glad to hear your chemo is doing the trick. Thanks! You give me hope!

clampett12
Posts: 6
Joined: Oct 2011

I was diagnosed last year with endometrial cancer and had taxol/carbo for 9 months . Last Jan I was cancer free. Then came March and I had another pet scan and the hot spots that were in my lungs came back so I am on Doxil for 8 treatments I am on my 5th had a cat scan the other day waiting for the reslults. If this doesn't work is there anyone out there that can tell me what else can I do ?

NJZ62
Posts: 32
Joined: Sep 2012

Do you know if your cancer is hormone receptive?

I was diagnosed Aug 2012 with metastatic EA (20 mos. post total hysto & internal rad).
1 lesion in lung, 1 in liver and "seeds" or "sprinkles" throughout my omentum.
I have had my 1st taxol/carbo session, feel much better overall, going for 2nd session next week, then CT scan to see what's what.

I was terrified when I got my dx because I kept reading these scholarly articles with dreadful outcomes for metastatic EA. Joined this network and these wonderful women have been talking me in off the window ledge!!!

Here's why I'm asking about the hormone receptive cancer cells ----

A gyny (mostly surgical) oncologist gave me the metastatic Dx, then referred me to a medical oncologist for the chemo. I know my first onco said Megace and some other drugs can help shut down hormone-receptive cancer cells.

Now my medical onco says Taxol/carbo is the "gold standard" for EA, with everything else tends to be less effective, but trust me, if my T/C regimen doesn't work, I'll be asking about anything and everything that's ever worked for other patients!

Megace has some side effects, but not as toxic as chemo, I believe, so worth at least asking about?

take care clampett12, positive energy & good wishes are being sent your way.
Nancy

Cargo12
Posts: 1
Joined: Oct 2012

I just did a 2 month regiment of Megace and had no success. I will be starting chemo in a week or so after I have my port put in. I will be doing Taxol/carbo as well.

missbabsonmars's picture
missbabsonmars
Posts: 29
Joined: Jun 2010

Mia - thanks so much for replying to my post. I got so overwhelmed there for a few months that I didn't even realize that people had responded to my message! I will have my 6th chemo. tx in 3 weeks and afer that a PET scan and CT scan to see where I'm at with the cancer. The 3 month CT scan showed the cancer in lungs had decreased.

Thanks again. Tell me how you are doing please.

Babs

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hi, Babs, I do have lungs mets. Have been receiving chemo since 10/2010, and mets are shrinking but not yet gone. I was terrified of the chemo, but I have had 7 rounds so far. I hope you are handling chemo well also.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Babs - I had carbo/taxol every three weeks - I think for 6 sessions. Then I had radiation. But the lung responded well to the carbo/taxol. It's a killer chemo. Chemo got easier each time. They do everything possible to control the nausea and the aches and pains.
Good luck - I'd definitely push for the carbo/taxol.
Mia

sand5249
Posts: 2
Joined: Feb 2011

Hi MJ5, just wondering what chemo drugs you are receiving? I had carbo/doxil that seemed to be working, but after 6 rounds, still showed small mets in lungs. Took 2 more treatments, had scans and cancer is growing again. I will start carbo/cytoxin tomorrow.
Good luck in your treatments.

Lori_VA
Posts: 16
Joined: May 2011

I also have mets to my lungs and wondering what drugs you are taking? Carbo/Taxol did not work for me.

Take care!

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending healing thoughts your way!

Please keep us posted on your progress!

Laurie

sand5249
Posts: 2
Joined: Feb 2011

I have been battling endometrial (uterine) cancer since 2003. It was treated with a radical hysterectomy and internal radiation. It recurred in 2005 as a mass in the lower right abdomen. I underwent radiation and chemo, but had little results. After being told by my GYN Oncologist that surgery would be morbid in his opinion, I sought a 2nd opinion. I changed doctors, had abdominal surgery and underwent chemo with great success. June of 2010 I found that I had mestastic endometrial cancer to my lungs and a mass obstructing my right kidney. I had to have a stint from the kidney to the bladder and started carboplatin and doxil in July. In December I had a PET/CT scan that showed the abdominal mass gone and only a small area in each lung still affected. I took 2 more treatments of carbo and doxil. Just had another PET/CT scan and the abdominal mass is still gone but the cancer in the lungs has started growing again. I will start carboplatin and cytoxin Tuesday and hope it will stop the growth. My doctor had wanted to use avastin but the insurance company feels it is not proven effective for endometrial cancer. However, I have read that it has good results for ovarian and lung cancer, as well as colon cancer.

Elizabeth from Georgia

Lori_VA
Posts: 16
Joined: May 2011

My uterine cancer has also metastasized to my lungs. This happened while I was taking carbo/taxol. I am currently in a clinical trial at NIH which combines dasatinib and avastin. I'll let you know if it works. Good luck to everyone.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Lori,

Hope all is going well for you...How did you get diagnosed with the Liver mets? This is what I worry about most...I am not sure why...Did they diagnose from a CAT Scan?

Let us know how you are doing!

Laurie,

LenaW
Posts: 1
Joined: Mar 2011

Hey Babs, I couldnt help to read your story! it really helps to see someone going through what I, my family and my mom(the victim) is going through! her uterine cancer has spread to her lungs as well causing her to be losing breath. Her lungs continue to build with fluid and the fluid has cancer cells in it. She has done 2 treatments of chemo and she meets with her oncologist fri for a follow up. She feels ok but we are all concerned. How is your chemo working for you? Please follow up with me! thanks!

missbabsonmars's picture
missbabsonmars
Posts: 29
Joined: Jun 2010

Hello All - the chemo. drug is the carbo/taxol combination. I have been extremely fortunate in that the side effects have been manageable: fatigue and moderate to severe joint pain in the knees for about ten days after treatment. I am receiving treatments every four weeks. Of course, I was in excellent health going into this and am doing everything I can to maintain that state of being by practicing many complementary therapies.

I am fortunate in so many ways! I have been a sober member of AA for 27 years, so I have an incredible support network there, along with a wonderful husband and sister, and many, many friends. I am also very grateful to have stumbled upon you lovely ladies!

Babs

BFITTERMAN
Posts: 3
Joined: Aug 2014

Have just finished my six rounds of Carbo/Taxol with that horrible Neulasta shot -- and one of those gave me incredible joint pain. I couldn't sit still, couldn't sleep, you know the routine.  Then my darling PA told me about a study that was done by the makers of Allegra (allergy medicine, over the counter) and it seemed to alleviate the problem for many patients.What a difference this made for me! Took unbearable to just slightly annoying, and I could sleep again. I don't think I could have made it through without it.  Today I learned that I have two more mets endo tumors in my lung so will have to do another round of chemo. I was devastated for about an hour, then decided to put on my big girl pants and do the work.  Yuck, but hey, I haven't felt sick from the cancer since my first occurrence in 2011.  I don't know what medicines they will try next, but I'm definitely stocking up on the Allegra again. That stuff works.  Good luck and God bless you all. Betty

Ro10's picture
Ro10
Posts: 1481
Joined: Jan 2009

Sorry to hear about the mets to your lungs.  I admire you for " putting on your big girl panties" and are ready to do the work.  I have heard that Claritin taken before and after the Neulasta shots helps reduce the bone pain.  I thought it helped me. 

Good luck with your further treatments.  Glad you have felt well through your chemo.  May God bless you, too.

sleem
Posts: 92
Joined: Feb 2010

I am getting over what I think was the flu. My husband had been sick & then I became so with the same stuff. Did you have any othe symptoms before going to the doctor with bronchitis? As, that is what I 'think' I'm getting over. Should I ask my Dr. about this?

Thanks for any info.

kumo51
Posts: 1
Joined: Jan 2011

My uterine cancer metastasized to my lungs also.
I start a chemotherapy next week.

Moni

Maggie379
Posts: 3
Joined: Sep 2011

What type chemo are they using for your lungs? My biopsy is being analyzed to see what will work best. Maggie379

BFITTERMAN
Posts: 3
Joined: Aug 2014

Good luck to you. See my post about Allegra. If you end up with joint pain at any point, it could really help. XXXX

alidabee's picture
alidabee
Posts: 1
Joined: Nov 2011

I am new to the site. I am greateful there is a forum for others to join in as "Uterine cancer metastasized to lung " is not an isolated occurance. My beautiful mother (69yrs) had uterine cancer surgery in April and was cleared of cancer down there. Upon a CT scan before going in for surgery, Dr.s noticed spots in her chest - she was just diagnosed last week with two tumors that metastasized to her lungs. They have grown to 3mm since first noticed. I was in disbelief - unable to comprehend how this can happen. Today I have some comfort in reading your post as well as from others. I have yet to find the name of the medication they perscribed to mum, i only know it as a hormone pill that "should" shrink the tumors, with a follow up CT scan in 3mo. I wanted to know how you are doing these days?
thank you for sharing
alida

nancygt
Posts: 86
Joined: Jan 2010

My cancer also is in my lungs-this third recuurence and others involved lymph nodes so I am conerned. I had carboplatin/taxol first year (2009)and CA 125 went way down but 5 months later I had recurrence. This time my doc consulted Moffitt and MD Anderson and they recommended Cisplatin and Doxirubicin-I did 6 treatments. CA 125 came way down and tumors shrunk 30% which my doc thought was great-all I could think of was that they counted 20 tumors and 70% of those were still there. Now again 5 months out from chemo and they are growing again and are in all 4 lobes, not just bottom of lungs, although no symptoms.We did PET scan last week, he put me on Tamoxifen hoping to retard growth and we will disucss game plan in a few weeks with PET in hand. He said there with several other drugs to try-Ifosfamide(probably with Paclitaxel), Topotecan and Avastin.
Does this mean that cancer has spread through bloodstream as opposed to lymphatic system and that recurrence is considered distant metastasis as opposed to local ? I must admit I am depressed and panicked and even though I like and trust my doctor, I wonder if is time to get consultation at MD Anderson again.I know this cancer for me is not curable, only treatable and he told me the tumors would not be completely gone after last chemo (NED twice before was not meaningful anyway) and I am scared this is the beginning of the end and wonder if he will tell me that. Linda P and I were on almost exactly parallel schedules and it has shaken me that I found about the new growth on the day she died-I am not usually this panicky but I am having hard time emotionally this go round.
Sorry to go on so long but some times it just helps to vnt or exp0ress our fears.
I wonder if it is worthwhile to do carbo/Taxol again as it came back so quickly before-has anyone had that rteatment for recurrence in lungs that has been lonlasting.

HellieC's picture
HellieC
Posts: 459
Joined: Nov 2010

I was so sorry to read that you have a third recurrence and it is in your lungs. It does sound as if it may be a good time to get a second opinion. Not because there is anything wrong with the treatment options suggested by your medical team but more to get another perspective on it. I am in the UK, so I don't know the "form" in the US but I am sure that other ladies on this board could recommend or help you find the best place for the second opinion.
I'm not sure what type of cancer you have (adeno, UPSC, MMMT etc), but my oncologist seems to go by the "6 month rule" with the carbo/taxol combo. She reckons if you get 6 months or more response with it then you can be classed as "platinum sensitive" and have it again, but anything less than 6 months and it's not a good idea.
I understand that if the tumours are ER+/PR+ then hormone therapy e.g. Megace may be a way forward. My oncologist mentioned it to me a month or so back, when we thought I might be facing another recurrence (my scan turned out to be clear, thank goodness). She said that she knows of ladies who have stayed on it for many years and it has controlled things for them. I believe that it can be particularly useful for recurrences in the lung. Perhaps worth investigating?
I hope things become clearer for you.
Helen

RoseyR
Posts: 464
Joined: Feb 2011

Hellie, can't remember whether your tumor was UPSC or MMMT: could you clarify? Am interested in the recommendatin for Megace should you have a recurrence.

Thanks,

Rosey

HellieC's picture
HellieC
Posts: 459
Joined: Nov 2010

My cancer is the more common adenocarcinoma - not one of the more aggressive varieties. However, although it isn't aggressive, it is classed as "persistent", as it has survived a hysterectomy and then, for first recurrence, pelvic radiotherapy. So far, it is 10 months NED following treatment with carbo/taxol for second recurrence. It is ER+/PR+, so Megace is an option if it comes back again. But there are also chemo options - I guess we will cross each bridge if/when we get to it!
Helen

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending hugs and prayers..I can sense how scared and lost you are feeling :(

I agree with Miss Hellie, I think it is time for a second opinion or at least a collaborative meeting with some options explained....

Can you share whether you have UPSC or not?

Keep in touch...

Laurie

Kaleena's picture
Kaleena
Posts: 1224
Joined: Nov 2009

Nancy:

I am sorry about your recurrence and agree with the others that a second opinion may be beneficial to you or at least you will have a better look at this.

Sending comforting thoughs your way.

Kathy

nancygt
Posts: 86
Joined: Jan 2010

Yes it is USPC. After my post, I got up nerve to call my onc's nurse and cajole her into sliding me in next week rather than Dec.20 - that wait felt like agony. I know they have PET scan results and I can ask him more questions and perhaps discuss the second opinion. I went to MD Anderson just under 2 years ago for that purpose and if you see them every 2 years, thy will keep active patient file.Also I intend to ask him about the info G.D.Pawel posted recently on the doctor in calif. that is about to patent a more powerful assay test that includes Avastin.
I am not PR + but my doc cited the same studies Linda P had mentioned that they were seeing 20%+ effectiveness with non PR +-(as good as most 2nd and 3rd line chemos), Maybe if we see it is not growing fast, I can give it 90 days even if it is only "holding pattern" expectation.It is so hard to decide how long to wait (or should I say gamble) between jumping back on chemo or giving both your body and psyche a few more months of respite.
I appreciate your responses - beautiful sunny day and I took a bunch of winter clothes to a charity looking for them, signed up to drive another patient in American Cancer Road to recovery program, and then treated myself to a new smartphone(like a grown up Xmas toy) and enjoyed a big Greek lunch.Amazing what a good day and the ladies on this website can do to keep you going. Still some fear and trepidation but at least they are not ovewhelming everything else right now.

mhilda
Posts: 12
Joined: Jun 2011

I have Endometrial cancer that has mets to my right lung. I am on Tamoxifen since July. When I went to the Oncologist in September the tumors had not grown. I go back the week after next to see what the tumors are doing. I am estrogen positive and progesterone negative. I am trying to stay positive.

nancygt
Posts: 86
Joined: Jan 2010

Good to know the tamoxifen is keeping it stable for you as Iam also ER and PR negative.
I wondered if it made sense not to jump back into chemo but stay on tamoxifen and your success combined with earlier postings from Linda P. is encouraging. Good luck on upcoming check up amd keep us posted.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

So sorry about the progression of the UPSC. I'm also on same time schedule as you and Linda P. with one recurrence under my belt. I got scared when Linda was failing and talked to me doctor. He explained that not all UPSCs will act the same - depending on the way they divide some will be more aggressive - Linda's obviously was. He was trying to help calm me. So I encourage you not to think you are a definite goner at this point. I'm happy you got in earlier to your doc. It really helps to have all the information.

Are you near Moffitt? I live in Fort Myers area. Keep us posted.

Praying for you!! Mary Ann

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

For any of you who are comparing your situation to Linda's, please keep in mind that Linda chose to fight aggressively against the metastatic cancer in her liver.

She was so hopeful that the radioembolism procedure (done twice) would buy her more time. However, the procedure proved to be too damaging to her liver & she died of liver failure which of course was secondary to USPC. No one knows how long Linda would have remained alive had she not elected to have the radioembolism done.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

I guess I never thought that Linda's Radio Embolism treatment accelerated her Liver Failure...now I am even sadder to think that :(

Did she state that her physicians believed she may have lived longer had she not opted for the treatment?

Laurie

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Dear Laurie

I am saying "no one knows" about Linda--it is certainly not something she posted that her doctors had said about her prognosis. There was only one Linda--not two (one who had the radioembolism procedure & another identical Linda who did not opt for the radioembolism procedure).

Sure, maybe the procedure extended her life a bit--or not. No one knows anything for sure. But somehow, when you read her explanation of her liver failure, it sounds like it was caused by the procedure more than directly from the cancer.

The radioembolism procedure seems to have been successful for others with mets to the liver. Linda's situation was unique to her as each of our own situations is unique to each of us. I guess that's all I was really trying to say--it is just human nature to make comparisions.

None of us has a doppleganger who is taking an alternate path that we didn't choose. We are all just making the best decisions we can with the current technology & information available.

mhilda
Posts: 12
Joined: Jun 2011

I saw to Gyn/Oncologist this past Wednesday and the cancer has remained the same and has not grown. He said I was doing well and would see me again in 4 months. I am to have a CT scan a little over a week before I see him. He is keeping me on Tamoxifen.

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

Hi, I have been reading the posts about lung mets. I am looking for reassurance I guess. I am reasonably fit and not overweight. Meditating daily. Yoga sometimes when I am not too stiff! I had my one year follow up recently. Had pap done which was clear, but was having problems with breathlessness and palpitations. Have lost appetite which is how I have been since surgery and also have problems with bloating and indigestion also affecting my breathing.

My onc gynaecologist gave me a referral for chest xray which was clear. My primary care physician sent me for echocardiogram and have had Holter monitor on for 24hrs. Again good result.

First experienced breathlessness before surgery for endometrial cancer. My doctor put it down to anaemia at that time but it has continued and become more frequent. When I bend to pick up things or when I walk upstairs, even just looking out the window. No problem with walking on the flat. Have asked for a referral to respiratory specialist who I will see early January. Should I do anything else? Since I had cancer diagnosis I do not trust my judgment as much as I used to.

Ava 52
Posts: 7
Joined: Jan 2011

ask for a chest ct that is how they found my mets to chest love and blessing be with you frined i am in the battle now meet with the oncs tomorrow scared to death but worry never never helped a thing a hang on to that

Mdotsie47
Posts: 28
Joined: Dec 2011

I have just been diagnosed with my third recurrence of uterine cancer since 2008. I have had radiation and brachytherapy but not chemo. This time chemo is planned because the mass is in my lung and has already eaten into my ribs. I have been told surgery to remove the tumor will not work. It is very encouraging to read about chemo successes with this, but I am still really scared and glad to have a place to go to share thoughts .

HellieC's picture
HellieC
Posts: 459
Joined: Nov 2010

Just wanted to let you know that I had chemo after surgery for my second recurrence (pelvic recurrence) - I am now 11 months NED (no evidence of disease). I won't lie to you - the chemo can be quite hard (it varies enormously, depending on the drugs used - some ladies sail through, others find it harder) but it IS do-able. You WILL get through this and we will be here with you every step of the way.
Thinking of you
Helen xx

Mdotsie47
Posts: 28
Joined: Dec 2011

Thanks for your encouragement! I am still in the stage of absorbing the information and my emotions are jumping all over the place, so it's wonderful to get hope for my future. I am in a lot of pain because the cancer has eaten into my rib bones. I need to get pain meds but don't want to be blotto all the time. Any experience with pain relief that allows you to still have a clear head would be most welcome.

I am nervous about chemo but I am more nervous about having a shorter life than I had hoped for, so if chemo is what it takes, bring it on!

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I can recommend something for pain relief but it isn't legal in most states. I've seen it talked about on other cancer threads but never in uterine. Try checking out the bone cancer site. They might have recommendations for pain.

Take care,
Cindy

Mdotsie47
Posts: 28
Joined: Dec 2011

Are you referring to medical marijuana? I live in California where it is sort of legal. You have to get a card for it. But I thought that was for nausea. I will check the bone site. Thanks for the info.

I am picking up some Vicodin today. My experience with it is that it's not great for serious pain, but maybe it will get me through for now.

It is so nice to share this with a community of women who know this experience. I was feeling kind of hopeless but after reading the posts on this site I don't feel despair, but have hope.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

..it works as a pain reliever too without the side effects (namely constipation) that you get from narcotics. I considered taking it when I was having the bone pain from the taxol after chemo, but it is not legal where I'm from and I didn't want to explain to my doctor why my blood tests suddenly turned up funky assuming it could even be seen in bloodwork if they weren't looking for it to begin with. I wouldn't have mentioned it given that you have lung mets, but apparently it doesn't effect the lungs short term. My friend's sister, diagnosed with lung cancer resorted to using it when other pain meds either failed or caused too many issues for her.

That said, if its deep bone pain, it may not work. I think the effects are similar to taking something like ibuprofen, more of a muscle relaxer then anything else. I've had good luck with Vicodin, but it puts me in lala land, and I can only take it when i'm lying flat on my back, otherwise it makes me sick and dizzy and I certainly can't function on it.

I hope you find something that works for you.

Take care,
Cindy

Mdotsie47
Posts: 28
Joined: Dec 2011

I agree with you about Vicodin. I take it in the early evening when I can put my feet up and zone out. It does take the edge off. It is very constipating, too. I've been taking miralax for that but it's not completely doing the job.

My rib is causing a knife stab pain in my side that is nearly unbearable sometimes. I have been told they won't treat it with surgery so I wonder if it's going to hurt for the rest of my life. I would like to know if anyone else has had lung mets that invaded the bone and how you were treated.

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

I don't have bone mets but I work for a major cancer center and they sometimes use targeted radiotherapy to treat bone mets specifically to reduce the pain. You definitely should ask about it if you can't find relief elsewhere.
Laura

Julie2009
Posts: 4
Joined: May 2011

I was diagnosed with endometrial carcinoma in 2009.I had a total hysterectomy at the age of 38. I opted out of radiation. I also have nodules in my lungs that are stable. My question to all of you is what signs did you have that the cancer had metastasized into the lungs? I have a resistant cough for the last six weeks. I also am having issues breathing during aerobics class which has never been a problem. I have a dr. appointment next month, but I am thinking maybe I should try and get a chest x-ray from my normal Dr. Any advice would be grateful.

Karenhopeful
Posts: 38
Joined: Jan 2012

Go get a chest xray. My gyne-oncologist added the chest to my ct check up scan because I was complaing about breast pain or I wouldn't have known. My primary doctor was not giving me yearly chest xrays so I had no idea and nothing to compare to. Ask for a chest xray!

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