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Waiting for Diagnoses

justryingtomatter
Posts: 6
Joined: May 2011

I was taken to the hospital 3-30-11 after having a small stroke after xrays, lots of test
and a cat scan they discovered a spot on my right lung about 2cm. After coming home I had a pet scan on 5-11-11 and sawOn 4-31-11 I was taken to the hospital with a small stroke, after a lot of test including xrays the lung Dr on the 15th. He showed my husband and I all the pic's of the lung, as I have copd and only have 50% lung functions, I have had RA and gout for 15yrs, now with the stroke my arteries are clogged at 68 and 69%. He was reluctant to do a biopsy for fear of collapsing my lung. Said it would be awful to die from a collapsed lung and then find I didn't have cancer. but, he left the decision up to me, well after listening to him, I said no.( Now I not sure that was a good decision.) He said we will wait 8 wks do another cat scan and compare them and see what changes have come. He never said I have lung cancer.
Later on consulting with my Md who has been my DR. for 14 yrs, He just lookked at me when I ask him why wern't we testing to see if it could be TB, bronchitis, pheumonia, or scar tissuse as I have had bronchitus and pheumonia a few times since 2007. He said it wasn't any of those, they all had different properties. His opinion after reading the pet scan, is cancer. He said the lung Dr will then decide if I am a canidate for surgurey, rad, or chemo, or non of the above. I think they don't have much faith in my health. Now I must wait on the lung Dr. (June 16th for cat scan, June 20th for Dr. appt.) long wait when you are so confused and my fear is how much can it spread in 8 weeks? I am 68 and I don't want to die, but, I am not real afraid of death, but I do fear anymore pain then I already have from the RA. Since Nov 2010 I have had so much increased pain in my neck and shoulders, I can hardly stand it. I am unable to take nsaid or acetaminophen in any form, because of allergies. Makes my throat swell shut. I take 3-5mg methadone, I get 3 Epidurals a yr. My Md has added 2-20mg prednizone a day that does seem to be helping some with pain but, the prednizone is really messing with my mind.
Sorry for such a long post, but I do not have family near me and I don't want to worrythem with this until I am sure. Do you think I should just wait (34 more days) or where else can I go to find answers? Thanks.

sissylu1
Posts: 66
Joined: Jan 2011

I'm so sorry to hear what you are going thru, it appears you have had enough health problems and you have had more than your fair share...waiting is the hardest part, it's sheer torture and it seems so un natural for us to just wait it out...my advice is go with your gut instinct..in regards to not saying anythhing to your family I would strongly encourage you to re think your position on that-maybe there is a family member that can help you think this thru..you need support right now.
From what I know about my own lung cancer a 2cm nodule is not even considered a mass (anything over 3cm is considered a mass)...mine was 1.5cm and was in my right middle lobe-had the entire lobe removed in Dec of 2010 and no follow up treatment needed..it also depends on what type of cancer you might have, some respond better than others to different kinds of treatment...I hope this helps, continue to use this board for support but please seek out a family memeber!

justryingtomatter
Posts: 6
Joined: May 2011

Well there is no reason for pity, I have had the same Md. for a long time, everytime he saw me he warned me about my smoking. I have smoked for more then 50yrs. When our time started we did not know the dangers but,that excuse will not fly for the last 20yrs. You do the crime, you do the time. Thanks for letting me know about the size , that makes my mind easier. Mine is in my right lung in the lower left hand corner. What do you mean about a lobe? How are they going to tell what kind if they can't do the biopsey? You know the reason I want to wait to tell the kids is my daughter works 2 jobs, 1 son has a trucking business, drives 1 truck himself all over the states, 1 son travels all over the US and some other countries. All have mortages and college kids, etc. In this economy they all have more on thier plate then they need now. As soon as I would know something I would not withhold the info. My husband is very supportive but, gets so emotional when we talk, I hate to bring it up. I am glad I found this board. Lots of info here. Thanks

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Your lungs are made up of sections called lobes. The left lung has 2 lobes, the right has 3 lobes. My tumor was in my lower left lobe. The entire lower left lobe was removed so I still have one left lobe and 3 right lobes. Your children will want to know what is going on with you no matter what is going on in their lives. They can be a great support to you during this time. My children (also busy with their lives) would be very hurt if I did not let them know what is going on with my health. It does no good to beat yourself up about smoking. No one DESERVES cancer. I never smoked a cigarette in my life and I got it anyway. Best of luck to you and stay on the site to gain insight and support from the members here.

lekkerone
Posts: 199
Joined: Jan 2011

You and I have some similarities so maybe I can encourage you. Remember though that we are all different but maybe some of what I say can be applicable to you.
I too smoked for 40 some years. When I had my surgery in Dec. of 2010 I was 73 years ago. Like you I have copd. I had to jump through many hoops before the surgeon decided to take a chance on me. Like mamacita I had the lower left lobe removed. Before that I had many tests and fell in a grey area where they weren't sure I could manage without that lobe. Finally he decided to operate. He said he had a sixth sense that I would do well.

I had the VATs surgery and haven't felt so well in years. I go to the gym on most days and use the treadmill, rowing machine and do the weights. I say this not to brag but to let you know what is possible.

Now your health problems are much more numerous than mine but the advice I would give to you now is to keep moving. Don't sit around and worry. Move as much as your RA will allow. Go for walks and practise taking deep breaths to get that oxygen deep into your lungs. You want to do as well as possible should they decide to put you through any tests.
I would be happy to answer any questions I can as would others here. It's a worry there is no getting around that. Take care, Diane

alexander22
Posts: 14
Joined: May 2011

last week went into hospital satarday felt short of breath after x ray the doc said i had a nipple shadow i also had little trouble eating monday had endescope they said it was clear today ct scan this is the first day i dont feal like eating and a bit sick still got a bit of breathlessnes more when i sit still although i can sycle 5 miles a day no probs and i feel a bit light geaded is this normal

justryingtomatter
Posts: 6
Joined: May 2011

Well after an 8 week wait. I went for the results from the 2nd cscan that I had on the 16th. The mass was 2cm on May 1st and now is 5 cm so it is growing and showing every sign of being lung cancer. Without a biopsy a diagnoses is not possible. So it has been decided that we will take the risk. It is the only way. I will go Friday 24th. It will only take about 15min. and I can come home in 5hrs. Then they can decide on treatment.My problem with this now is fear of the biopsy, the dr didn't want to do it before but, now is willing to risk it. I think because it increased insize. What do you think? We were given the option of Going to Moffitt Cancer center in Tampa Fl. That would mean 75 miles 1 way. If treatment is required it might mean everyday for for a month or longer. I have a Pumonary Dr. a Radiation oncoligist, and a chemo oncoligist. I think I'm covered right here. After looking them all up on the net I feel as if I am in good hands. The Lord will decide my fate. Am I nervous damm right I am, who wouldn't be. I had other plans for fri. I had planned on taking up mudd wrestling for excercise, now they went and spoiled that.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

that will help you! :)

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

As for the biopsy, yes, it was actually more risky to try to biopsy a 2cm (mass) than a 5 cm. mass. They can pinpoint it with more accuracy. I would not worry, really , if they were not capable, they would not attempt it.

cb girl's picture
cb girl
Posts: 56
Joined: May 2010

My husband had tx at Moffitt in Tampa and we are very pleased with the results. We live 2hrs away in Cocoa Beach. My husband had a 5cm tumor in the right lung and a 4cm tumor in the lower left lobe. He did 4 months of chemo, but were able to do that locally under the same protocol from Moffitt as our local cancer center is affiliated with Tampa-saving us lots of driving. The docs at Moffitt didn't seem to have a problem with us doing chemo at home as the chemo they prscribed was pretty standard stuff chemo wise-not a trial drug or anything.The oncologist we saw at moffitt was Dr. Chiaporri- a long winded speaker, but definitely knowledgeable and takes his time talking to you. Ultimately we were able to have surgery after chemo, there at Moffitt, because the tumors shrank and the surgeon, Dr. Eric Toloza, takes a very aggressive approach-if you're willing to go down that path. He successfully removed both tumors in two surgeries and we are currently cancer free. We have been pleased with the Thoracic clinic. Fortunately my husband didn't have any additional health problems like you are dealing with. Take a little bag with wheels and put a sweater, bottled water and some snacks it as you may be waiting and the place is big and it's easier to wheel your stuff around than lug it around if you go to Tampa. Of course, don't forget the latest issue of Wallowing in the Mud, how to stay fit and toned in the Florida Mud. Good luck on Friday

justryingtomatter
Posts: 6
Joined: May 2011

Well today I received the word that I do indeed have lung cancer. They described it as nsclc (non small cell lung cancer ) undifferentiated carcinoma. Stage 2B/ 3A . Unable to remove lung., or do surgery, not enough lung capacity to sustain breathing. So I go to the oncology institute Tues 7-5-11 to see if they can do radiation. I will ask about cyberknife or gammaknife (both non surgical procedures I have read about.) Next would be Chemo. My options are few but they are there. Without any treatment he only gave me 3 months. I don't believe him because he made me another appointment for Oct and that wouldn't work out. Plus I have other commitments already on the calender. My Birthday Is September 26 th. Can't miss that. We will be doing Country Karoke in the barn. Way to much livin to do. I am feeling sorry for my husband, they warned him that it would be a big job taking care of me for awhile. I am going to look into some health care options for us. He is far to doting and already is hovering all the time. I wouldn't say anything for the world and don't any of you. but, it is kinda nerve wracking. I wish I had more energy and was less tired. Well that about sums it up. The above is what I sent to my friends and family It pretty much sums it up. For all you wonderful people who have been such a comfort to me I want to thank you. Now that I know whats going on I can quit being such a me person and pray that all of you get the best healthcare possible and God shines his light on all of us and makes us well and strong enough to fight this ugly disease.

lekkerone
Posts: 199
Joined: Jan 2011

Despite your name, you definitely do matter a lot. That is a difficult diagnosis you received and there is no use in my trying to sugarcoat it. Let's hope that radiation is an option for you. You have a very important thing going for you and that is a will to live and also a good sense of humour. Use those to your advantage. Please come here often and let us know how you are doing and being a "me" person right now is a good thing because it is important that you look after yourself well and that you share your feelings. People can generally take more than you think. Take that from one who used to keep everything a secret. Let your family look after you and of course any healthcare workers that you might have.

My prayers are indeed with you and how nice of you to think of all of us at a time like this. Cry when you need to cry and laugh whenever you can,,,,,,,,,,,,,Diane

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