New Here~ My mom

[Deanna M.]

Hi everyone, I am new to this site, I am glad to have found it. Message boards are the greatest, I have been with a group of great women since May of 2000 when I got pregnant with my daughter ( a mommies board. )

My mom had pneumonia that began in late NOvember. When 2 rounds of antibiotic still showed a fuzzy x - ray, her dr sent her for a cat- scan. THe cat scan came back with 2 masses in her right lung, one 13 cm and the other 2 cms. We saw a pulmonologist who has performed a bronchoscopy, we get the results tomorrow.

When we saw the pulmonologist (the morning after she found out she had 2 "masses" on her lungs), he gave us a very doom and gloom prognosis. He told us it was stage 111B Lung cancer, with no possibility of surgery, quite possibly not able to radiate also. THe larger tumor is in the center of her chest (in the mediastinum?) and looks like it is wrapped around bronchial tubes. He told her she would have 6 months if nothing is done. He also told her that she should go home tonight and talk with her family about her wishes in regards to life support, etc. He explained that due to this cancer she might start coughing up blood, lots of it and would end up on a respirator and die on it. It was a huge shock to both her and me, being that just the day before she thought she might just have a tough pneumonia that she couldn't get rid of. He also told her that it was fine to keep smoking, it wouldn't help anything for her to stop! (She's been a heavy smoker for 40+years) He told me after the bronchoscopy he would be surprised if she survived 6 months even with treatment. He sent her home that day on oxygen 24 hours a day due to low blood oxygen levels (around 85-87%). He also said he would think that the cancer has metasticized to the brain. Now, what has really bugged me now that I have done my reading is #1 this guy isn't a oncologist, how does he know what is going to happen? #2 Her cancer hasn't even been diagnosed officially with biopsy, how the hell can he speculate so much? He even staged her!!!!

Anyway, after tomorrow when he gives us the diagnosis we are done with him, we will be moving on to oncologists.

I am just wondering if any of you have had these types of experiences. My mom is feeling pretty good right now, she just gets out of breath easily, but not too badly with the oxygen. Does the oxygen mean anything bad? Today she had a cat scan of her abdomen and pelvis and a mri of her brain. I got the pulmonologist to prescribe them to save a step when we get to the oncologists.

My question for Debaroo~ since we are both Long Islanders, wondering what doctors you are using?

I have talked to the coorinator of a lung cancer team in Stony Brook Hospital, she says I can get an appt. right away once I have the biopsy results. Dr. John Fiore is the oncologist in the team.

I have also got in touch with Sloane Kettering in Commack and they said they would give us an appt. within a week once we got the biopsy results.

The pulmonologist is sending us to a group of oncologists that work out of St. Katherine's Hospital and St. CHarles Hospital by the names of Drs, Carusso, Clausen, Montana and Burns. I am not so crazy about this group since the hospitals they are associated with are very small.

The pulmonolgist kind of rolled his eyes when I said the other 2 places i was going besides his recommendation. He said he didn't think it was necessary. I should have said "what would you do if it was your mom?"

But seriously, do you think I need to go to all these places? I really want to try the STony Brook Lung Cancer team, from what I have read it seems really cutting edge.

Thanks so much to you all in advance for your help. My mom is all I have, I am an only child and my Dad passed away suddenly (heart attack) 10 years ago. My 2 year old needs her Nanny around for a lot longer!!! I will add you all to my prayers. Thank you all for giving me lots of hope.

[Guest DaveG]

Deanna:

First of all, welcome to Lung Cancer Survivors for Change. I am a lung cancer survivor, having been diagnosed in September 2001, 1st surgery Oct 2001, and 2nd surgery Sept 2002. The first thing I want to say is by all means, seek those other opinions. I have heard much about Sloan Kettering, and I live in Wisconsin. Several, who frequent this site, I know, have been, or are, patients there. Secondly, no one knows how long a person has, or doesn't have. So much depends on the attitude of the individual. I would recommend that your mother stop smoking now, as she probably still has a very large portion of her lungs still functioning. By all means, continue to hope for the best. Many good things are happening with lung cancer today.

I was a smoker for 40 years +. I quit in 1997, 4 years, 3 months, before

being diagnosed. When I was diagnosed, the cancer was in its very early stages. My story is posted at www.alcase.org, The Alliance for Lung cancer web site. (My background and story will soon be posted here, under "About Us", found on the Main Page. I am the co-director.)

We are not doctors here, but most of us are lung cancer survivors. Many of us have been where your mother is now. All of us are at different Stages in our "journey" with lung cancer, but we can all relate well to the disease that binds us together. The careivers and family members who use this site can give of themselves as well, because they have been on the "outside" as you are right now. They know how it feels to see their loved one go through surgery, chemo, and radiation. Any of the three carries pain.

This disease is surviviable. Much has to do with attitude. No one can say that one has, 3 months, 6 months, or 1 year. That is like saying you won't be in a car accident tomorrow. No one knows for sure how much time anyone has. There are many on this board who have outlived all estimates given them, when they were first diagnosed.

Estrea, Deberoo, and others are very familar with the medical facilities available in New York. I will make sure they read your post and get with you.

[Debaroo]

Hi Deanna, welcome to the board, although I am sorry that this has become necessary for you. First things first. When my dad was in the hospital for food poisoning an x-ray proved no blockage in his stomach, but showed a mass on his spine. This was an incedental finding. My fathers primary care physician, also NOT AN ONCOLOGIST, said, and I quote "I am sorry, your father has metastatic pancreatic cancer, there is nothing we can do" when we asked about chemo, he shrugged his shoulders and said "Huh chemo, eh, you can try, but theres really nothing that can be done" Needless to say, my mother sister and I were hysterical. For 2 days we thought, this is it , Daddy will die in a matter of months. Then I met with the surgeon assigned to my dads case (south side hospital in bay shore) who showed me results in a CAT scan that was done after finding the tumor on the spine. He showed me a small mass on each of Dads lungs and said, " we have to find out what this is" I told him exactly what Dads primary care doctor said and how he said dad definatly had metastatic pancreatic (now I sound like Jessie Jackson- sorry for the pun) cancer and how his days were numbered and there was nothing that could be done. The surgeons response was "No offence, but that is BULLS---, unless you have a tissue sample you don't know WHAT you are dealing with, and I WILL GET YOU THAT TISSUE SAMPLE. Without a biopsy, you know nothing. You can guess based on the shape of the mass what it MAY be, but without a tissue sample you know nothing." Thank God for him. A needle biopsy of the spine showed metastatic lung cancer (at first thought to be small cell, but it is non small cell). Dad was diagnosed in January 2002, and is doing pretty well. You are right to be angry. While the pulmonologist may have a basic idea of what the masses' MIGHT be, only a biopsy can tell conclusivly. My dad uses the oncologist from South Side, we have found them to be very helpful and respectful of our constant questions. I am particularly fond of Dr. Gold.. But Sloan is where we wanted dad to go, although they treat basically the same. Sloan sees more lung cancer patients in a week than the others see in a year. Go with where you are comfortable. What I liked about dads oncologist is that I called him to ask if he believed in giving time lines (I didn't want one given to dad because I felt that his mental attitude would be crutial in how he responded to treatment) he told me that he dosn't believe in timelines because "I am not God". Also, he told Dad that if he was still smoking (he quit 10 years prior to getting sick) to stop immediatly, to aid in his response to chemo. If you get the vibe that Stony Brook is the place to go, than do that. You, and especially your mom have to be comfortable with the treatment center you choose. Stony brook is a great hospital. Please feel free to e-mail me whenever you need. I will answer as many questions as I can, and there is ALOT of experience on this board. Alot of SURVIVORS, alot of advise and support to be given here. This board has been a Godsend to me. Please keep in touch, get the biopsy ASAP and as far as that pulmonologist goes, tell him he's fired and never to expect to see you or anyone you love there again! Try to take this thing one step at a time. The biopsy being the first step. Also, be prepared, if they do a needle biopsy and it comes up negative, they will probably want to follow it up with a more invasive biopsy, since a needle biopsy may not get an accurate sample of the tissue that they need. Again, feel free to e-mail me, as Dave said, we're not doctors here, but we can share our own experiences and being from Long Island, I may be able to give you a hand. Please keep us posted and try to keep your chin up. There is much that can be done for your mom if she gets a lung cancer diagnosis. Try to remember that. Take care, and keep in touch, Deb

[Deanna M.]

THank you Dave and Debaroo, for your advice and pearls of wisdom, it helps so much. Dave, good for you for beating the cancer!!!!! That is great news. THis is a great place you started here.

Deb, I am so sorry about your Dad also. That is awful what the doctor told him at first too!!! It is just so wrong. Thank god he is still going strong, I will pray for him that it keeps up.

My mom had a broncoscopy on Friday, we find out the results tomorrow from the pulmonologist. THen it is good riddence to him!!! I am hoping the oncologists will have something better to say.

Dave, my mom's left lung looks completely clear(according to the pulmonologist), so I totally agree that she should quit smoking. Hopefully the oncologist will tell her that. It is hard for her to think she can quit when a doctor told her to continue!!! I will keep you guys updated after she finds out her type of cancer.

Thanks for all your help.

Deanna