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ALV9574 06-19-2006 11:36 PM

Question about Stage IV...anyone PLEASE HELP!
hello, my name is Andrea, my mother in law was diagnosed with Leiomyosarcoma in her Breast in 2000 and had a double masectomy...for five years she was completely cancer free. During a routine ct scan in June 2005 a mass was found in one of her lymph nodes which was immediately removed...three months later a spot was found on her lungs and surgery was performed to remove it only to find that it was simply a fungus..benign. She continued to get her regular scans and all was well.
However, April 10 of this year she received news that there were two small spots on her on each side. The oncologist was not concern and gave her an antibiotic, thinking it was simply a hystoplasmosis or..infection. Three weeks later, she noticed an extremely enlarged lymph node on her clavical and immediately got another ct scan. At this time there were many spots found on the lungs and a biopsy revealed that the lymph node was malignant with the same cancer as was in the breast 6 yrs had now metastasized to the lungs and lymph nodes. The dr. immediately ordered chemotherapy..which began this morning. Our main question has still been largely unanswered by the dr...

All research has shown that chemo does not work on these types of sarcomas..this dr. specifically told us a year ago when the spot was found on the lung that surgery was the only option...he also informed us that from this point on..whenever a mass was found it was to be immediately removed surgically. However, now...a year later he insists on Chemo..even though this is the SAME cancer..that, a year ago..he insisted did not respond to chemo..

He informed us today that this is Stage IV Soft Tissue Sarcoma w/mets to the lungs and lymph he simply not giving it to us straight?! By him urging chemo...should we take that as his 'last ditch effort' to do opposed to nothing?! He has given no indication that she is in any danger of not surviving least for now...Should we be preparing for that?!? She claims that she feels it is hard for us to believe that we would be nearing an end any time soon...and since the Dr. is a family friend as well..we would hope that he would give us the 'bottom line' ..but maybe that's why he hasn''t told us that she has "____" amount of time to live?! I think we would like to know if that is the case. Typically when someone says they are diagnosed with Stage IV..that connotates "nearing the end" doesn't it?!
Any help on this topic would be GREATLY appreciated!! She is 58 and in great health other than the cancer..however, she waited an extremely long time to get the initial breast cancer examined..which resulted in a radical double masectomy..

Thanks for all of your help and support!!!
Hopeful, but confused..
Andrea in Indianapolis

dyana 06-20-2006 07:56 AM

Re: Question about Stage IV...anyone PLEASE HELP!
Andrea, first I would like to say I'm sorry for everything you are going thru. It is very scary. My daughter had a liposarcoma removed from her thigh (at age 24) 2 years ago followed by 7 weeks radiation. I'm not sure on the treatment for leo, but I think your doctor is right. They usually just watch the spots. Get a second opinion if your not sure. Are you near a sarcoma center? That's where she should be seen by a specialist in the field. Call the American Cancer Society to see where the nearest one is. I know alot of websites you
can go to but we aren't allowed to share them on this site. Do not think of her as a statistic and to me a doctor can not put a time frame on someone's life. Miracles do happen. Please let me know what happens, I will be thinking of all of you, Dyana

courtenaynt 06-20-2006 08:03 AM

Re: Question about Stage IV...anyone PLEASE HELP!
Any respectable doctor will understand and support your getting a second opinion. I would get a second opinion. I have Leukemia and have been to four doctors, two recomended completely different treatment (one even a diagnosis!) than the primary doctor. I honestly didn't love my first doctor--he was not compassionate and way to "medical" and not human enough.

I would not waste time getting a second opinion. At least that way you will feel confident in the treatment you pursue, not matter what it is, and you will have your questions answered. You deserve the truth and to have all the information so you can prepare mentally for what's to come, even if it's just relaxing and doing what you originally planned.

Good luck.

ALV9574 06-20-2006 08:06 AM

Re: Question about Stage IV...anyone PLEASE HELP!
Dyana..thank you for your response and words of encouragement..I'm in a really hard position because I fee as if I am the only one being 'pro-active' in this in-laws are the type to just 'go with the flow' and do whatever the doctor tells them to do..I personally think she needs to get to a sarcoma center instead of a general cancer treatment facility. I am going strongly urge them to do that if the current chemo regime that she is on doesn't do the trick..which, statistically, there is a good chance that it won't..although we can always pray for a miracle!!!

Thank you!!
Andrea Vadas

p.s. how long has your daughter been in remission?

ALV9574 06-20-2006 08:10 AM

Re: Question about Stage IV...anyone PLEASE HELP!
YES! I definitely agree with getting a second ..or third opinion..and in a way, I guess this is considered a second opinion..the original doctor that she had in Terre Haute, IN suggested Chemo to her a year ago...that is when she did seek a second opinion and came to Indianapolis to see one of the areas leading cancer doctors..whom, we were only able to get into because he is a client of my husband (who is a personal trainer) at the time, he suggested AGAINST chemo..and obviously that made us feel better about getting a second opinion..however, here we are a year later..and now he too is advising we are wondering if getting the second opinion a year ago and deciding not to do chemo at that time was the right thing to do..we may have just worsened the issue by waiting a year..we are not sure!?

dyana 06-20-2006 08:33 AM

Re: Question about Stage IV...anyone PLEASE HELP!
My daughter has been in remission for 2.5 years, thank God. She also had a metal rod and pins inserted into the femor bone because the radiation made it brillte. She had the front entire femor muscle removed with the 14 pound tumor and at such a yourg age. She is now the mother of a beautiful baby boy. We take one day at a time, and hold our breath everytime she has her MRI's. With no insurance thaat is a battle in itself. I will stop now because I get angry with our Medical Society., Please keep in touch, Dyana

ALV9574 06-20-2006 08:38 AM

Re: Question about Stage IV...anyone PLEASE HELP!
Oh My insurance?! do you do it?!?! Well..I'm sure you are really fed up!! My in laws premiums are now at $2500 a just gives you a sense of hopelessness when you think about the government in relation to medicine...everything from insurance to prescription drugs..we were just talking yesterday about how much of a facade they must put on about wanting everyone to "'help find a cure"'....why would they want to find a cure? Think about how much money they would lose!! It's just a very sad reality...but i have to keep thinking that eternity doesn't encompass just this life..and the people who make the decision with have to deal with those decisions someday...

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