Waiting for biopsy

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

Greetings,

Someone from another forum directed me here, and after some consideration I thought I'd stop by. I don't have a cancer diagnosis yet, but there is a homogeneous mass that looks like squamous cell on the CT scan [in my neck] and I'm currently waiting on a biopsy.

The problem that I have is that I don't have anyone who's really close to me whom I can confide in. I was doing okay - they're talking thyroid cancer which I understand to be one of the most survivable cancers - but now I've had a set back in getting my biopsy and my nerves are finally starting to crack. I was supposed to have the biopsy last Tuesday, but the ENT decided that the mass was too deep, and in too complicated an area (its between the thyroid, the vocal cords and the jugular) that she wanted me to have an ultrasound guided biopsy instead. So, to have that I have to have my file sent over to another hospital, have someone there go over things and then call me and make an appointment. So, I had been all set to know by the end of this week about the diagnosis - and now I don't even know when the biopsy is going to happen, let alone when I might have a diagnosis!

Its just one more thing that I didn't need to have happen in my life right now - I'm just getting over a complicated financial situation that drained my resources dry, and now I'm facing medical bills when I thought that I would be able to get back on my feet. The bills for the tests have reached over $300 already [for what the insurance didn't cover], I haven't seen the bill yet for the CT scan, and I wonder what the bill for the biopsy will be.

Having to wait two more weeks to find out if its cancer or not is going to drive me nuts! I've been wondering if I should start to tell a few friends, just to have folks to talk with, but what I really need to do is cry and I don't know if anyone I know really wants to deal with me as a crying mess. The one friend who does know about all the testings freaks out if he sees tears.

I'm sorry that I've written so much, its just really tough right now. The transmission on my car is going out, my Pap smears are all coming back abnormal, they're watching a lump in my left breast, and I've been dealing with some crappy financial issues that have me stressed. I feel like my world is slowly spiraling out of control and its really hard to deal with. I have multiple things that I had needed to plan for this spring, and I can't - I'm just sitting in limbo. And I'm afraid - I assume that the mass will have to be taken out, and my system doesn't deal well with pain meds or anesthesia - as well, there's a chance that it might be a lymphoma which I think doesn't have the survival rate of thyroid cancer.

Anyway, thanks for reading through this. Maybe if folks had some tips for how they dealt with the waiting?

-Centaura

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

I should probably add a bit more about myself - since it seems more customary. I'm a 34yr old woman, who's been hypothyroid for years, and who has a large family history of cancer (mainly breast). My aunt was diagnosed with stage 4 cancer (not sure the primary one, though she had it everywhere in her body by the time they were treating it) around my age and died when she was 44.

I've been reading through some of the other threads here, and hope to learn what I can look forward to if it does come back as a carcinoma.

-Centaura

brainman · Posted: Fri Feb 06, 2009 6:21 am Post subject: Re: Waiting for biopsy

Centaura, I am very sorry about your health concerns. I know that waiting for a biopsy is very hard.

I have very little income and therefore problems paying medical bills as well. I called my doctor's business office and made arrangements to make payments over time. I manege to pay off the bill right in time for the next test... in my case an MRI Rolling Eyes

.

Although it is very tragic that there is so much cancer in your family, I do not think there is a genetic like between breast cancer and thyroid cancer. But that doesn't mean much... That you have cancer is the only thing that matters.

Keep us informed. You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

Thanks for the thoughts. Just being able to vent is helpful. I make enough to live by, and I might eventually get ahead of things stopped happening. I recently got done paying 4 months of double mortgage payments - long story involving escrow, property taxes and homestead status; literally this week was the last of those payment and then things were going to go back to normal, to the point that I might have been able to get my car fixed.

But now this. Who knows, it might turn out to be benign, but from what I'm reading the fact that its homogeneous, has some calcifications, and has nearby lymph nodes swollen brings down the chances that its benign. I also read the CT report, and the two things that it looked like to the technician were a 'squamos cell carcinoma' or 'Castleman's Disease' - which is pretty much a precancerous condition, if I'm understanding what I've found. I haven't come up with much about Castleman's that makes sense.

I'm just really upset since instead of getting the car fixed, my extra income is going to go towards medical bills. And this is just the testing phase - I cringe to think what a surgery is going to cost - I have insurance, but insurance doesn't cover everything. The diagnosis being dragged out has just finally gotten to me.

Thanks again for your well wishes,

-Centaura

brainman · Posted: Sat Feb 07, 2009 10:08 am Post subject: Re: Waiting for biopsy

I had insurance that paid 80% of the cost and I also had a very understanding doctor who has willing to accept what the insurance paid and wrote off the rest. Of course, the others involved (pathologist, anesthesiologist, and hospital) did not write their charges off but were willing to work with me. If you have insurance that will pay off most of it, the team will be willing to work with you.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

Well, I've found out more news on the financial front, thought still haven't heard when the rescheduled biopsy is going to happen. My insurance company has a website that gives rough estiamte of the cost of different treatments, and I've learned that the hospital that I'm working with might be able to work out a payment plan for my expenses. Its probably still going to be rough paying them off, but depending on how they figure out the payments it might not be as bad. I know that I wouldn't have been able to cough up a couple of thousand out of the blue - so that worry is gone. Now I just want to know when the new biopsy will be, which will give me an idea of when the diagnosis will come. Which will let me start planning my life again a little bit.

In fact, I'm going to call the ENT's nurse that I saw last Tuesday - she said that if I hadn't heard from Memorial in a week, that I was to call her back and she would try to get them to get in touch with me about an appointment.

-Centaura

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

Well, the biopsy is now scheduled for this Friday, which puts news of the diagnosis almost two weeks out.

-Centaura

Ereshkigal · Regular Joined: 19 Jun 2008 Posts: 34

[quote="centaura"]Greetings,

Someone from another forum directed me here, and after some consideration I thought I'd stop by. I don't have a cancer diagnosis yet, but there is a homogeneous mass that looks like squamous cell on the CT scan [in my neck] and I'm currently waiting on a biopsy.

The problem that I have is that I don't have anyone who's really close to me whom I can confide in. I was doing okay - they're talking thyroid cancer which I understand to be one of the most survivable cancers - but now I've had a set back in getting my biopsy and my nerves are finally starting to crack. I was supposed to have the biopsy last Tuesday, but the ENT decided that the mass was too deep, and in too complicated an area (its between the thyroid, the vocal cords and the jugular) that she wanted me to have an ultrasound guided biopsy instead. So, to have that I have to have my file sent over to another hospital, have someone there go over things and then call me and make an appointment. So, I had been all set to know by the end of this week about the diagnosis - and now I don't even know when the biopsy is going to happen, let alone when I might have a diagnosis!

I'm sorry that I've written so much, its just really tough right now. The transmission on my car is going out, my Pap smears are all coming back abnormal, they're watching a lump in my left breast, and I've been dealing with some crappy financial issues that have me stressed. I feel like my world is slowly spiraling out of control and its really hard to deal with. I have multiple things that I had needed to plan for this spring, and I can't - I'm just sitting in limbo. And I'm afraid - I assume that the mass will have to be taken out, and my system doesn't deal well with pain meds or anesthesia - as well, there's a chance that it might be a lymphoma which I think doesn't have the survival rate of thyroid cancer.

[/quote]

Since you were kind enough to respond to my posting, I thought I'd return the favor here.

The first thing I'd respond to is the bit about "waiting for results". I could go into a long, detailed version of how I coped with it, but I really can just sum it up by saying that I was in such pain from "another" condition (which I later found out was IBS/GERD) that I... almost hoped I would have something terminal, just to end my constant suffering. But, happily (as it turned out) medication helped me get through the pain, and today I'm (of course) happy it turned out it wasn't cancer. Nevertheless, I've had a few scares since then (what with the spitting up blood and all) and it's hard to say how I dealt with waiting for test results to come back. I suppose, looking back, that I just buried myself in music to take my mind off of it... or, if nothing else, I could commiserate with the lyrics in songs about death, dying, pain, etc... and in a way that was my relief. Sometimes, though, you really just have to let your pain out in the form of venting to someone. Or crying. Or both. I would imagine there's some kind of cancer support group around you, if you felt comfortable doing something like that. Even if you don't have cancer, you would be able to talk to people who have gone through the very same things as yourself; from the waiting on biopsies onward.

Also, you talked about the survival rates for lymphoma versus thyroid cancer. As far as I know, there are several types of lymphoma; however, I've discovered the following (general) information:

[quote]Survival rates vary widely based on the type of lymphoma and stage of disease at the time of diagnosis. However, the overall 5-year relative survival rate for people with non-Hodgkin lymphoma is 63%, and 10-year relative survival is 51%. [/quote]

Information found at the <a>American Cancer Society</a>

There are several bits of information about thyroid cancer survival rates found <a>Here</a>. Overall, just looking over the figures, it does seem that - if found at the early stages - the outlook for people with thyroid cancer is very, very good.

Anyway, I hope the information I've linked to will help you at least a little bit until you are able to get a definitive answer on your diagnosis.

Ok, so evidently this bb does not support html, so the links I used to discover the information found above will be listed as follows:

http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_thyroid_cancer_staged_43.asp?sitearea=

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_are_the_key_statistics_for_non-Hodgkins_lymphoma_32.asp?sitearea=

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

Thanks for the reply. I had the biopsy today, but he's not sure that he got anything. He could only reach one of the areas that they're worried about, the others were either behind veins or "too high" which I'm not entirely sure what that meant, other than the fact that he can't get to them. In the one area that he could reach, he said he was running into the calcification and not able to get around it. He thought he might have gotten something on the third try, but there's no guarantee. I'll know next Tuesday.

Now I'm just more confused - he's been the most talkative of all my doctors so far, and he said that at first glance it wasn't as bad as he had read in the reports - that the reports had sounded pretty dire. He actually left to go look at the other images again. I also found out that he had not been sent the CT scan report, so I'm guessing that all he had were the previous ultrasound pics. So, he was talking as if it was thyroid cancer, but the CT report said it looked like squamous cell - which I guess is a type of skin cancer (I think). He finally told me that my lymph nodes looked wrong, the others had just said that they were enlarged - he said that they were the wrong shape to be normal.

In the end, it looks like I'm not going to avoid surgery - he thinks that's pretty much the next step since he's fairly sure that he didn't get a sample today. If nothing else, to take the two lymph nodes out. But, he is going to request to see the CT scan report. So, on one hand I have him thinking its thyroid cancer - but I have other reports thinking its 'regular' cancer. (I for a while thought lymphoma, since there was constant talk about the lymph nodes, but now I'm thinking its one of the other two) I could deal with the idea of thyroid cancer - it seemed to be the kind of cancer that you'd want to get if you had to have one and got to choose. Regular cancer is scary - since that gets into weeks of neck radiation, and possible stomach plugs, and other scary things.

I'm feeling a little better - my roommate actually asked a bit about things today, not out of sympathy but because he was curious, so I chatted with him about what the possibilities are. We did decide that he was going to start a rumor that I had a hickey, due to the bruising that I'm going to have on my neck by tomorrow. To explain part of that humor - I'm a fairly conservative sort when it comes to interpersonal relationships, and am known to be single where we work.

So I'm still waiting, and have been having good days and bad days with it all.

-Centaura

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

Well, if anyone is following this thread - right now I'm going for a second opinion. I don't like some of the thing that have happened with my current clinic - like going for a biopsy only to find out later that the guy hadn't been sent the right pictures. The biopsy came back negative - but I don't think that means anything when the radiologists says "I didn't sample the right area". But it means that I'm not a priority to the ENT, whose nurse couldn't get me an appointment [to discuss the next step] until 6 weeks from now.

That was the last straw - I have the radiologist saying that he didn't get a sample of the right area - he was concentrating on the nodules on the thyroid, when the mass that they're worried about is behind the thyroid and not connected to it. And he's now said that there is no way that he'd be able to reach it, since its behind the jugular. And, he thinks that I need to have surgery, if nothing else "because those lymph nodes need removing".

So, there is a cancer center nearby that I had wanted to check out anyway, so I've called them and checked out if I can self-refer and whether it would be covered by my insurance. I can, and it will, so they're working on getting my records to show one of their doctors. Everything I read about masses in the neck with enlarged lymph nodes nearby says that I need to be worried - I don't think a negative biopsy result - when they outright say they didn't go to the right spot - means that I should get lax. And I'm not interested in waiting 6 weeks to find out! Now, if the cancer specialists at the Cancer Center say that its fine to wait 6 weeks to find out, then I'll feel better. But right now I think its just bureaucracy that's making me wait six weeks and not a doctor's opinion. I haven't been able to talk with the ENT to know if she really wants to wait 6 weeks to see me or not, but then again I had to call her office and have not had anyone there call me.

Anyway. the lady at the Cancer Center was really nice, she said that she'd call as soon as they got copies of my records, and after that it should only be a day or two before I hear from a doctor there with their opinion.

-Centaura

brainman · Posted: Thu Feb 19, 2009 7:17 pm Post subject: Re: Waiting for biopsy

Centaura, I do agree that you should go get a second opinion. It is not a good sign that your clinic did not have the correct images. It is impossible to know what is going on if the biopsy was botched.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Ereshkigal · Regular Joined: 19 Jun 2008 Posts: 34

Centaura,

I'm so sorry they didn't even check the right area. It's so hard to have faith in doctors anyway because of all the bad things you hear on the news and such, and then when something like this happens... well, I know I'd be angry.

I hope you're holding up well in any event. As you say, it's probably good that you're there anyway -- I wouldn't want to have my doctors do all these tests and then find out I have to be referred to a cancer clinic anyway later on. I've heard one of the things that drives up health care costs is that tests are often repeated when a person finds out they have cancer (or at least it's highly probable), because each institution wants their own people to do the testing... so at least you didn't waste [i]too[/i] much time at the other hospital/doctor...

Have you been holding up well? I can relate to the fact that the stress of not knowing is sometimes worse than just getting a diagnosis; so I hope you get a clear picture of what's really going on very soon.

centaura · Regular Joined: 05 Feb 2009 Posts: 15 Location: Midwest

Well, I just got back from seeing the speicalist, and can I tell you that it was the best thing that I've done! He doesn't think that the tumor is a tumor - he thinks its actually part of the tyroid gland itself that's broken off. He says that my thyroid medication has been kept at too low a dosage and that my body has been attacking my thyroid gland, which is why its breaking apart.

Everything that I heard about that cancer center was right! I am so glad that I went there. He did in one appointment what my other doctors took two to three! He talked to me, and then wheeled in an ultrasound machine and went ahead and did the biopsy that I had two other doctors tell me couldn't be done. And, there was a pathologist standing in the hallway ready to look at the material under a microscope and give an answer right then! No waiting days for a result from some far-flung lab!

So, while he says I'm not 100% in the clear right now - he wants to see me in a month after I've been on the higher dosage - but if things haven't changed in that month then he's sure that I don't have cancer. If I did have cancer - thing would change in my gland in the next month even with the higher dosage medicine.

I'm feeling so much better. I did a count today - in the last month I've had 12 doctors appointments, seen 7 different doctors and been tested for 4 different types of cancer. Its been an emotionally draining experience that I never want to go through again!

-Centaura

	Cancer Forums Forum Index -> Head and Neck Cancer/ Thyroid Cancer Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others