Really, Really, Scared

[Maxine]

As I posted earlier, my recent lung x-ray showed mild reticular nodularity, and interstitial pattern which appears diffuse. When I looked up reticular nodularity I found things ranging from the most horrible cancers, to infectious disease, and autoimmune pulminary problems.

I have some clubbing, and I most recently found out after going through old records that the GI doc I saw in 2006 said I have mild clubbing. At first I didn't believe I had clubbing, and thought it was just the shape of my finger nails. The geneticist at NIH told me I had clubbing when I went to the study, and I was telling her this was the shape of my finger nails. She said, "no this is clubbing". This can happen with certain autoimmune diseases that cause respiratory problems, but this can also happen with CANCER. However, I have had this clubbing for 3 years, so it sounds like something more chronic.

You all can see my signature line for my health issues, but I wonder what else is going on. The secretary that works for my PCP reminds me of the teacher from Peanuts cartoon--------wa, wa, waaaa, wa, wa,wa,wa............ She has no personality at all, so much so that when I went for blood work one day, and they had to call my doc's office, they dreaded talking to her. it's almost like I have to be my own doctor, and I'm certainly not qualified for that. However, it seems like I have to suggest the appropriate testing, blood work, and specialists I need to see. I received no phone call about lung x-ray results, even though the radiologist was clearly asking for more information like past x-rays to compare this one to, and clinical information. Who is responsible for what? Should the radiologist called my PCP to request this information? Should me PCP have contacted the radiologist? Should my PCP called my pulminologist? He doesn't know if I have one, but if I were him I would have called someone.

My breathing feels somewhat restricted, but it feels like it's caused from my thoracic spine problems. I can take in deep breaths, and my breathing seems normal, my the right side feels somewhat restricted. When I arch my back a little, I can feel the pain starting with my mid spine and radiating across the right side of my lower rib cage. The pain spreads into my shoulder blade, shoulder, and sternum---------------------always more with certain movents------like using my upper body, my arms, turning, ect.?

I still seem to have a lot of mucus every so often throughout the day, and it's been this way since my last upper respiratory infection------------or was it more then that. Whatever it was, it started out with a head cold, and seemed to be clearing. I felt preety decent one night so we went ahead to a birthday parthy of a friend. When we got there there was a moderately sized bonfire, and some idiot was throwing everything and anything into the fire-------including a spray of gasoline one time......... . I was really mad, and wanted to leave, and we did shortly after. The smoke was thick, and insane. It was really chilly that night too. There was no way of getting near that fire to get warmer------------it was really unbearable. The next day I woke up losing my voice, and lost it for several days. I had a nasty cough, and upper respiratory congestion. When I went to my PCP listened to my chest he said he wanted me to get a chest x-ray and blood work, and we also did a soft tissue x-ray on my neck/clavical area. He sent to results of my blood work to me whihc was for my thyroid levels, and thyroid antibody levels which are always high at over 1000.

The x-ray results were not sent, and I had to request them. However, they sent them with no explanation.

So here I sit waiting until July to see a pulminologist. Lovely...

Maxine :0)

[firewatcher]

Maxine,

I have no words of comfort, only support and prayers. While you wait for your pulmonologist appointment, why don't you make an oncology consultation appointment as well. Rule out everything! You have a perfect right to be afraid, especially when doctors won't cooperate! Unfortunately you are going to have to take charge again; this does not sound like a "let's wait and see" situation. Second, third and fourth opinions could be in order. When you have so many different conditions interacting, diagnosis can be hard. Don't delay, but don't lose hope or your head! Look at this as calmly as possible and get organized. Many people freeze or panic when they hear the word "cancer," but it is often treatable IF that is it.

All I can offer is understanding of your fear and worry and many, many prayers!

((((((((hug))))))))))

Jennifer

Edited June 15, 2009 by flop
Long quote removed

[potsgirl]

I wanted to make a comment about being your own doctor...After many frustrating phone calls and not getting test results, I have made the decision that I have to be the one that ensures all test results and notes get to the right doctor, with copies to me as well. Doctors seem to be just to busy, and there are more and more PRN's and assistants trying to carry the load now. It's a major pain in the ***, but if I don't take responsibility for my health concerns, I'm never sure that they'll get done or if I'll be missing something...

My thoughts are with you as you try to struggle through all of these problems. I hope you find an answer soon, and please let us know what you find out and how you're doing.

peace,

jana

[summer]

Maxine,

We can all relate to that frightening feeling of having to be your own doctor and not being qualified for that. I was just thinking this afternoon about how it feels like our doctors can just forget about what we are going through between appointments, but we are there living every minute of it.

I can imagine how scared you must be. You have already been through so much. But you are very strong, and you will get through this too. Jennifer's advice is right on. Reading your posts over the months has been a real inspiration to me, as you have navigated your way around so many obstacles, including doctors. You must first find out what you are dealing with. Seek out a good oncologist and go from there.

Thinking of you, and praying for you.

Summer

[Maxine]

Thanks for you support and input.

Oncologist is not a word I want to hear right now!

My brother just died from cancer Feb. 16th. It was a horrible time for all of us--------------horrible............

I have already made an appointment with the pulminologist, and he read the reports. He doesn't feel it's urgent, and I hope he's right.

My pulminologist is an MD, F.C.C.P., JD. He's also got his law degree which is interesting. I've seen him before, and he looked at some shadowing on a lung x-ray I had in 2006-------he said it was nothing.

Please don't mention oncologist, as I don't think you seek out one of those until your actually diagnosed with cancer.

I am totally a wreck right now=====pretty much can't think of anything else. We had my granddaughters today, and -----------uh, I can't even go on......................

Maxine

[all4family]

((((((((Maxine)))))))))

I'm so sorry, and I don't have any good advice, but I do want to say I understand. I really understand the fear of the unknown. You know just enough to worry, but not enough to diagnose yourself. I would say just the fact that you weren't called right away would give me some reassurance it is not serious or urgent. And the fact that the pulmonologist doesn't feel it is urgent would make me feel even better. I was told that if there were anything serious that the radiologist would call the doctor right away. That being said I know how hard it is not to worry. Maybe you could just make an appointment with another doctor just to find out. When I was really worried about lung cancer because of a blood test, I talked to one of those online doctors you pay to answer your question, because I had 3 months before I could go to a doctor due to insurance. It gave me a lot of relief, and made the waiting easier. I know how you feel that you can't think of anything else. I was a train wreck before I wrote that online doctor. I spent hours on the internet researching, and trying to find out. Try not to wear yourself down with it. It is not worth it at all. Just go see another doctor. Someone once said to me it doesn't matter what it is that is wrong with you, stress will make you feel worse, and make the condition worse. I know it doesn't make it easier for you right now, but those words helped me to keep things in focus a little. I hope I have helped a little, and I really hope this makes sense. I haven't been to with it lately. Please take care, and I will be praying for you, and those aren't just words. I really do sit down at night, and pray for everyone on here. BIG HUG!

Suzy

[Maxine]

Thank you Suzy---

I just sat down to check my e-mails before going to bed, and gave this site one last look.

I did call the hospital the last x-ray was taken, and the more recent x-ray and asked them to send the x-rays to the pulminologist----the films.

He has the reports. He also has the report from the CT I had in Jan 2007----they have that on line, as this is the hospital the pulminary works with.

He'll be able to access that film on his own. The receptionist said that he can compare the films now if I would like to ease my mind.

I just don't have a lot of faith in the medical community anymore. My mother didn't find out she had terminal cancer until 48 hours before she died in Feb 2007------------almost exactly two years before my brother died. He had just found out his colon cancer spread to his liver at the same time we got the horrible news on my mother. He never told her. Her brother died of colon cancer two weeks after she died. Her sister died of brain cancer in 2003. she had a slow growing cancer, and lived 10 years after her brain surgery. Her tumor was so huge they had to take her skull apart to remove it. Right after surgery she looked like she wasn't going to survive, but she made it. She did have to learn to walk, read, write, and do other cognitive skills all over again. She was a independent woman with a great career. She could no longer work or drive once she was rehabilitated to the best degree they could help her.

You can see why I fear cancer so much-----------------------my mother's side was hit hard in the last few years. There was no other history that I know of from her parents, aunts, uncle, ect.

I do find it ODD that the hospital that jacked her around so much with the many tests they did over the years, and coudln't find this cancer until 48 hours before she died opened a new cancer center they were so proud of.

Thanks again for your encouragement, prayers, and kind words. I'm praying too.........

Maxine :0/

[firewatcher]

Maxine,

I know you are scared. I have cancer in my family history too. My Grandfather and all his family members died of some type of cancer, the doctors did not find his until it had spread to all his internal organs. My Grandmother on the other side of the family has leukemia and skin cancer that spread to her lymph nodes--they gave her six weeks to live...two years ago! Her leukemia is in remission and they "can't" find the cancer in her lymph nodes anymore. An Oncologist appointment may ease your mind, they can do blood-tests for tumor markers and find things much earlier than they could before. Squeak away, don't slip through the cracks! If your pulmonololgist knows your recent family history then he should understand your concerns and your immediacy! Hang in there, complain and whine and voice your fears here, we hear you!

With all the love, hope and understanding I can give...

Many many prayers!

Jennifer

[all4family]

Hi Maxine,

I am sorry for all that you have been through with this. Like you and Jennifer, I also have a lot of cancer in my family. My Grandpa died of prostate cancer. But they only gave him 8 months to live, and he went on and lived another 8 years. Then 6 months later my aunt died of breast cancer. After a couple more years my other aunt died of lung cancer (never smoked a day in her life.) My grandma had colon cancer, had surgery, and 2 rounds of chemo, and has been cancer free now for 20 years. Cancer is just an awful word, and no one wants to hear it. I don't blame you for how you are feeling. I hope you will take the receptionist up on the offer for the doctor to compare films now. Peace of mind is very important. And please let us know when you find out anything. Take care.

Hugs

Suzy

[janiedelite]

Hi Maxine, I don't have much advice to give except that I understand how it feels to be scared. When I was first going through the myriad of diagnostics for my various POTS symptoms, I had one odd lab result come back (cryoglobulins). It totally freaked my husband and I out, as the main cause of cryoglobulinemia was hep C (and I was an RN and have had exposure to body fluids). Well, I was negative for all the hepatitis bugs so they said it could be blood cancer and I was sent to the "o" doctor several times. It took several months and many tests to come up with a conclusion just like all the other conclusions for our symptoms: Well, it's not hepatitis, cancer, autoimmune, etc.... we don't really know! Since then, I've tested negative for cryo twice.

I know how scary it is to think about cancer, as my mom has been ill for a long time. Fear is a natural first reaction, especially if you've had to watch someone suffer from it in the past. Totally understandable.

Like Jana, I handle most all of the communication of my medical records. I like my PCP, but they stink when it comes to passing along info to other docs. The best investment I made was buying a cheap fax machine a year ago!

I prayed this morning that you would get answers soon, as I know this is only one of several serious health concerns you have. I hope you have a brighter day today.

Take care, Janie

[morgan617]

Maxine, if it makes you feel any better, radiologists are required by law to call the doctor that ordered any test that appears suspicious within 24 hours. Even pap smears that are "suspicious" are called straight to the doctor, before they ever get the written report. Breast lumps that looked suspicious were called to our office within hours.

I think every family has cancer in it, it's either the leading or second leading cause of death, so there's a lot of it floating around out there. I had an uncle that died one week after his diagnosis of colon cancer. Every single member of both sides of my family that have died, have died of cancer, except my mom and one aunt. 90% of them were GI cancers.

I get regular check ups and scopes, as does my husband, whose dad died of esoph cancer at 54, as do our sons. That's the best we can do. I have no idea why they caught your mom's so late, sometimes they can just be so aggressive, it's unbelievable. That's what happened to my father in law and my uncle.

I have had interstitial stuff on my x rays for a really long time. I have to get x rays, as I had a false positive on a TB test in my twenties, but once you react to the test, you can't have it any more. So x rays were required for jobs I got. I had stuff in my 30's and it's not progressed.

I know every new thing seems like another nightmare to deal with, but if they haven't changed your appointment from July, I wouldn't be overly concerned at this point. You know I've had my share of crummy times with doctors, as have most of us, but the report said mild and this has been going on for 3 years, so cancer seems pretty unlikely.

My mom had sudden cardiac death at 45, after an appointment that day with a cardiologist, who told her she was just a worry wart, women don't have heart disease. So I do understand your concern, but all this anxiety isn't going to help your overall health problems.

I would just assume it was the least of my problems until I heard differently. I have runs of vtach all the time, documented on my pacer, but I realized it doesn't do any good to go nuts worrying about something that may or may not happen. I don't tolerate the meds that might help them, so there's not a lot to be done. And worry and stress only increase it. It does get easy to always assume the worst case scenerio (I am grateful for the internet, but I don't always think it's the best thing in the world info wise, just enough to scare you spitless) but at some point we have to just take a big breath and relax a bit.

If you can't trust ANY doctor, you will never stop being anxious. It's like your EDS, I know nothing about this illness, but you have been to a boatload of doctors and gotten a lot of opinions regarding this. Of all of them, have you found one your gut said was ok? If you have, then just stick with him or her. The more you see, the muddier the waters get. And the more you question, because different doctors do have different ways of viewing things. Can stuff go wrong? Oh yeah. But it can also go right! Most doctors go with how they were taught, and it doesn't mean they are wrong, just think in different ways. Some will go far outside their comfort zone and others won't. But at some point you've got to trust someone! Or this viscious anxiety you have will never end.

I trust my pcp, I trust the surgeon he picked, because I trust him, I trust the anesthiologist, because he was picked by a doctor trusted by a doctor I trust. Can things go wrong? Of course. But I am not assuming they will. I am assuming, because they know about me, things will go smoothly. If they don't, they weren't meant to. Sometimes you just have to trust that some doctor out there knows what he's doing.

What happened with your mom and brother is a tragedy, to be sure, but we have all been touched by these kinds of things. I know you are scared, but I sometimes believe your terror impedes your chances to feel better. Like a deer in the head lights, we get frozen by it and then do nothing. Throw stuff, get angry that yet one more thing has been found, and then adapt as we always do. Chronic illnesses are not for sissies, so I know you are stronger than you think you are.

If you aren't having trouble breathing, if the pulmonologist has your films and thinks it's not urgent, then assume it's not. Sometimes I feel like that's easy to say about my gall bladder, they aren't the ones in pain, but it hasn't killed me yet, so I will wait for July 16 and assume all will go as planned. Scared, sure, but also trusting that my doctor has all the bases covered. If you don't have a doctor like that, then you need to find one, but remember, it's like waiting for the right time to have a baby, if you can always find a reason for it not being the right time, you will be 60 and childless before you know it.

I hope things go well, and really hope you are not offended by the lecture mode this sounds like, or may be, since I seem to have become more outspoken in recent years. I never intend to hurt feelings, ever, but remember, what is written on a computer does not always convey what the feelings behind it are. Let us know what the doctor says.

Oh btw, it is the job of the radiologist to get the reports out and the job of your doctor to get any other reports, films, etc to the specialist. However, I have been known to go pick up the films myself, just to be on the safe side. The specialist should have the info on his desk by the time of your appointment, but since he has already stated it's not urgent, he has probably looked at them already. If you want him to explain it all to you, make sure the films have been picked up and/or take them with you. many doctors will look at films while they are in the hospital making rounds and so have actually seen them, without them having been physically in their office. Call a couple days in advance and verify that the pulmonologist has everything, then you will know for sure. Good luck, morgan

[futurehope]

Thanks for you support and input.

Oncologist is not a word I want to hear right now!

Please don't mention oncologist, as I don't think you seek out one of those until your actually diagnosed with cancer.

Maxine

I sought out a gynecological oncologist when my regular ob/gyn was scaring me into having a hysterectomy and telling me I could have cancer. They are more qualified to diagnose. They have more training. I still see him despite the fact that I did not have uterine or ovarian cancer.

I do not know whether there are "generic" oncologists that treat different cancers? Anyhow, I would think you should try to see the most qualified person possible, right?

Try to reign in the fear, and do whatever needs to be done to get well. Wishing you healing thoughts.

[flop]

Hi Maxine,

I'm sorry to hear that you have an additional health worry at the moment. Several important things have already been said by other members but I just wanted to pull some of them together.

You have read that reticular nodularity can be a finding in cancer - however you have probably also read lots of other reasons for that appearance on a chest x-ray which are much less serious than cancer?

You also said that there were some changes on a chest x-ray from a few years ago - that is actually quite reassuring as most serious lung problems would have got dramatically worse over a few years. As the pulmonologist has both films he would very easily spot big changes that could be alarming.

Oncologist vs Pulmonologist.

Oncologists are experts in treating cancer, they don't normally diagnose it as people usually see an oncologist once there is a diagnosis or strong suspicion of cancer. Unless a doctor who has seen your films advises seeing an oncologist I would steer clear. Believe you me if the film showed a suspicion of lung cancer they would have had you in hospital for a CT scan and bronchoscopy faster than you could cough!

What you have is a not-yet-diagnosed lung issue on chest x-ray. You need to find out what the x-ray findings mean and if they are significant or not. The person who should be able to give you these answers is a lung and chest expert - ie a Pulmonologist.

I know it is easy to say and hard to do, but try not to stress whilst waiting to see the pulmonologist!

Flop

[Maxine]

Thanks again for your kind words and support.

Morgan, I'm not offended at all, and appreciate your support. I don't think of that as a lecture. I hope things go well for you when you get the GB removed, and I'm glad you have a good doc to work with on this. I'll be keeping you in my prayers.

I trust Dr. Grubb, my EDS doc., my orthopedic surgeon, and the doctor at NIH who is running the EDS study that I was in along with many others.

I just have a lot of trouble with local docs other then Dr. Grubb. Dr. Grubb happens to work right in my neighborhood, so that is one doctor I'm fortunate enough to not have to travel to. My trust issue do relate to circumstances in my family and friends--------(some of you), who had bad experiences. Some of them unbelievable no brainer health issues that should be caught right away.

One big mistake I did was read about what this finding could be, and I read about Lymphangitic Carcinomatosis, and this scared me a lot, as sometimes you don't know you have it until it's too late-------------prognosis is very poor.

I still want to know what this swelling is between my neck and clavical----it seems to be getting worse. Soft tissue x-ray was normal, as were the lympnodes in this area. I still feel like I can't get a full breath, and feel somewhat bronco spasm. I don't seem to get short of breath more then my usual----it's hard to tell because my low BP and blood pooling issues can cause me to be very short of breath, but then an hour later I'm fine. I have rib pain, but it seems to be radiating from thoracic spine, and I have a lot of problems with that.

Well, I should try to get my mind of this now and go do something. I'm really wiped out today, but I'm going to go along with my husband to his singing practice.

Maxine :0)

[Maxine]

Flop,

I forgot to add my pulminologist was basing his decision to see me in July on the report alone. But as you said the radiologist probably would have contacted my doc if it was more urgent you would think. They got the report from the radiologist, but I never heard anything from my PCP. If if didn't call my PCP myself, I probably still wouldn't hear anything.

I feel like I have some breathing issues, and feel more worn out then my usual. However, I have been doing things I shouldn't since our kitchen is being remodeled. It's nearly done now, but I feel so poorly it's hard to enjoy it. It feels like someone beat my thoracic spine with a ball bat, and it's taking my breath away.

I want this thoracic spine pain to pass, and maybe I won't feel so worried, as this feels somewhat restricting.

Thanks again for your kind words, supoort, and prayers--------it means a lot. I'm praying everything turns out OK.

Maxine :0)