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Hello Everyone.. New & Scared


Deborah VF

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Hey everyone.. My Name is Deborah, I am 51 from Texas and scared. I just wanted to introduce myself and try to get this journey off to a proactive start.. As it is not my nature to be out-spoken.

I want to start by apologizingin advance for being so long winded just seems no short way to put it all together. I have been looking for about a week now for a message board or forum and so far, this one has by far been the most informative and supportive I have seen. And is exactly what I am desparatey needing right now.

Last tues June the 8th, I went to the Dr after a few weeks of progessive back pain. I have a long hx of scoliosis and was suspecting that to be the cause. Was sent for an xray, which is where the nigtmare began.. The nurse returned to the room, having been formally very friendly and bubbly, now seeming unable to even look me in the eyes. She stated I needed a CT scan. So she ran some tests for the die sensitivity and eventually told me there was a white cloudy area in the xray they wanted to check out further. Being a smoker, the fear was immediate.

The CT scan was done and returned with the following information:

FINGINGS:

3.1 x 4.0 cm mass in the left medial lung or hilar region is present. There is minimal spiculated surrounding airspace disease.

Malignancy is the diagnosis of the exclusion and is suspected.

There are a few scattered nonenlarged mediastinal lymph nodes.

There is a dextro-convex thoracic scoliosis.

There is minimal patchy density in the lingula probably representing postobstructive atelectasis. Correlate for fever.

There is no pleural effusion or pneumothorax.

The doc on duty appeared to have brought the nurse along for his moral support in telling me. Although they did leave some marginal hope for it being non-malignant.. the conversation was continually directed toward preparing me for the worst. I was sent to see my doc for referral, who looked at the images and as I watched he seemed to involunarily cringe and look away as he scrolled though them. NOT a good sign coming from your doc! And he began the process of getting staff working on a referral. He loaded me up with enough pain meds for a month, that looked like a years worth, indicating I was going to be needing them. His assessment of it was i was bordering stageI possibly stageII Lung Cancer.

To make matter worse, I am currently uninsured. My husband just retired on railroad disability and I was dropped from his coverage when Medicare picked him up. I have been reasonably healthy and although working on it, I havent made getting a new policy a urgent matter.

Has been a week on a massive emotional rollercoaster. I feel like last tuesday I stepped out of life as I knew it, into a whole new world. A world that I dont understand. I dont understand the majority of the terminology. Even sorting out the CT Report is mind boggling. When I seen my Doc I didnt even know the questions to ask when I had the chance. So am writing them down for next time.

I am wanting to be hopeful that this may be nothing, but I feel everything thus far has been about preparing me to accept this new world.

I have gone from one extreme to the next emotion wise. With the primary being the guilt and self anger for causing this. I have begun taking Wellbutrin and have cut down to well over half on my smoking and I have a full-stop date of next Monday the 21st. I have smoked most of my life and stopping smoking right now is almost as scary as what Im up against.. and i know how crazy that sounds to some, but is true. But, I am very determined and ready to just git-it-done.

Right now I am in a franticly trying to seek medical care. Mainly the biopsy to start. Im not eligible for medicaid, I have looked into some clinical trials as a hopeful option, have a lot of calls out as well as hoping to seek out the High Risk Ins, (hopefully) soon to be availavble through the new Fed Healthcare Reform. So any suggestions or advice would be appreciated. I was told most places wont even except self-pay for initial procedures unless your able to fund the full course of treatment..

I will stop there for now.. with much more to come Im sure. I want to thank you all for being here and providing a place of support. You have no idea how much hope I feel just reading through yalls posts. It is my hopes that Ill one day be a source of strength and support for others as well.

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Welcome Deborah. Glad you found us. Most of us know how scary this time is for you. Click the link below and read my story. I was just 50, I have never had another cigarette again. This I am told is a good decision especially in making cancer treatment more effective. By the way I also have scoliosis.

Bringing another set of ears or a recorder is a wonderul Idea! It is so hard to remember all the details of what is being said, it is so upseting.

Keep us posted.

Donna G

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Welcome, Deborah. Sorry you need to be here. No need to apologize, whether you're being long winded, feel scared or angry, or whatever. This is a good place for all of it, whatever you're feeling.

I'm not well informed on what aid is available for someone uninsured, so I'll let others answer that. When you can, let us know more details about your diagnosis. No matter what you're facing, odds are there are others here who have faced or are facing similar.

I don't know what part of Texas you're in, but we have a support group in the DFW area. We meet the fourth Monday of each month in Trophy Club. If you want to come, we'd love to have you, and I'll be happy to give you all the details.

Again, welcome, and I'll look forward to hearing from you again.

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Hi Deborah,

Sorry you have the need to be here, but glad you found us. I remember the overwhelming fear at first hearing the news. You can yell and cry and scream here all you need too. We're here. It sounds like they caught it early which is a very good thing.

Dana

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Hi, Deborah, welcome to LCSC! You have certainly come to the right place for support. When I joined one predawn September morning in 2006, I was amazed at the speed and number of responses to my first post. And when you need info of a more "medical" nature, may I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here.

First, please get rid of the guilt trip. Yes, smoking causes cancer, but so do lots of other things. In fact, an increasing number (around 15% at present) of new lung cancer cases occur in people who have never smoked. When I was diagnosed, it had been 43 years since I'd smoked, and now I'm convinced my cancer was due to the supposedly noncarcinogenic chemicals I'd been exposed to for the preceding 20 years in my 'retirement" job as a print shop owner. So try to get the "did it to myself" thing out of your head and realize that quitting now will have benefits not only in any future treatments for lung cancer, but in other ways as well.

I agree that not having health insurance is a major concern. But one thing to be aware of, which might make things a little easier, is that the big pharmaceutical companies who produce these very expensive cancer drugs have programs which will pay some, most, and sometimes all of the drug expense for people without insurance or whose insurance co-payments are not affordable. And you don't have to be anywhere near Medicaid eligibility to qualify. There's information on their websites, and oncologists as well as hospital social workers should be up on the subject.

Of course, much of what I've said is premature until you actually know that you have lung cancer, and that's what the biopsy is for. Your scan report had some interesting wording that I haven't seen before, "Malignancy is the diagnosis of the exclusion and is suspected." I think that means cancer is suspected, and is the diagnosis that needs to be ruled out (or in) by the biopsy. Some of these radiologists sure have a way with words!

By the way, I'm from Texas too (a little town near Waco), but I've lived in Hawaii almost 40 years since that was my last Air Force duty location and I couldn't be persuaded to leave! Best wishes and Aloha,

Ned

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Deborah: I just wanted to take a minute to welcome you also. While I don't post as often as some of the members here, this is a wonderful place to come for support and answers. I know we are all hoping that your biopsy will turn out to be good news (and please let us know). And as Ned has said so well - no point in guilt or anger (unless of course you want to be angry at the tobacco companies who manage to addict so many people to their product) - but there are many other reasons today that cause cancer.

I don't really know too much about medical care options other than what others have already mentioned. I see you're from Texas, and it seems to me Texas has good cancer centers, and I would hope that their finance or oncology departments would be up on all of the options available. I have had friends with cancer who did get all of their medications free from the drug companies. I am just sorry that you have to worry about this issue at the same time you are trying to deal with this possible diagnosis. Facing even a possible cancer dx is scarey enough, without all of the added worry. Oregon, where I live, has a state health plan that covers some people who are eligible - perhaps Texas might have something similar.

I will be keeping you in my thoughts. Please let us hear how you are doing.

Diane

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WOW.. I am just feeling so overwhelmed by all the wonderful, welcomes and responses.. I cant tell you how awesome that feels..and how good it feels to have found this group.. Thank you all so very much. I definatelty will update often, and I'll be researching all the resouces and options mentioned. And drawing more and more on all your stories for hope. I am just ready to get on top of this deal, and learn all I can..

About the only thing I am truly certain of at this moment.. is.. I have come to the right place to do it..

Thanks and Hugs

By The Way.. Howdy to all you fellow Texans, SouthEast Texas Gal here... close to the Louisana coast..

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Welcome. Sorry you have reason to be here, tho. I do think that you'll find a lot of help, encouragement, and support at this site.

Have you contacted MD Anderson Cancer Center in Houston? Hospital surveys typically consider it to be the best cancer center in the country. Many others are also outstanding, tho. MDACC has a good reputation for helping patients who can't pay. Worth a try. Good luck.

Muriel

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Welcome Deborah. I can totally relate to your description of what it felt like when you got your diagnosis. It did feel like stepping out of life as I knew it and into a totally new world. After that people here call it getting used to the "new normal" and I found that to be true. Humans are for the most part adaptive creatures. You sound like you already are getting a grip on this thing. Keep us posted and ask any questions you have. We have a very knowledgeable group here.

By the way, I LOVE your avatar!

Judy in Key West

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The pulmonary specialist to whom I was referred after a CTScan ordered by the PCP never said the words "pleural effusion" though that was exactly what the Scan showed. Here merely said, "This could be something not good."

Not good was right. I know how you feel. Welcome to the forum and good luck. Sounds like you have a resectable tumor, which would be good news.

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Welcome Deborah,

I'm glad you found your way to us. The time right after the diagnosis is the most frightening. You will have a lot of questions and a lot of fears. We will do our best to help you deal with both. I see that you have already been referred to GRACE. I second the motion that you visit GRACE as well. Between the two communities, you can probably get all your questions answered and find the support you need. You are in for a roller coster ride. So let us ride along with you to help you over the bumps.

Susan

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Hi Deborah,

Sorry by being at the "Coos Tail" in replying to your postings,welcome to your new family of carers and sharers,dont concern yourself being long winded,I have a similar tendancy,I find getting all my concerns in my head,down on paper is theraputic,and can be the same for the readers here.I know how you are feeling just now,I found the days and weeks following my dx extemely difficult to cope with,in coming to terms with it.I remember the anger and guilt I felt about my poor life choice of smoking,in getting me into this mess.At the time of being informed of my lung cancer,my oncologist asked me if I smoked, used to-I replied,good he replied adding how long since,to-day I replied,and I never did since that day.Keep trying Deborah,you can stop.

Finding this site was a turning point for me,sharing with the buddies here made me realise I was not fighting this alone,and reading their survival stories,gave me hope of having a future,to stop thinking about the dying and focus my attention on living.I think a major factor in my change of attitude was also the passage of time,you will begin to lose your overwhelming anxieties and slowly begin to relax,until you rediscover your old pre-dx Deborah,and really begin to enjoy your life again.

I am really not in a position to comment on your health care insurance difficulties,primarily because I do not understand your systems but also politically I would hate to upset anyone in America,by speaking out of turn.I will hope and pray for you ,that you find a good solution to your problem,your dx is enough to cope with ,without the concerns of access to treatment

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