lung 'tumor'

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JasonTR
Posts: 10
Joined: Sun Oct 22, 2006 4:28 pm
Location: Prairie du Sac, WI

lung 'tumor'

Postby JasonTR » Sun Oct 22, 2006 4:52 pm

Firstly, i'm so glad to have found this site and thank you for such a wonderful resource. My husband was diagnosed with Stage IV colon cancer (with tumors in the liver and lung) in May. He was originally on Avastin/Oxaliplatin/Leucovorin/5-FU with an 46-hour infusion. There wasn't any change in the liver or lung after 7 treatments, so they've just switched him to Irinitocan/Cetuximab and this is week 2. Before switching treatments, he was hospitalized for a week with unexplained fevers. During this time, they took a CATscan of the lung and noticed that it had changed considerably in the past month. While before it looked like a golf ball, it now looks like a golf ball with a hollow center and many more smaller lesions surrounding it. They took a biopsy thinking it was the source of infection, but it came back negative. The pathology report also came back negative for cancer, altho it had shown up in our PETscan as cancer. The doctors are confused, and that makes me concerned. Has this happened to anyone else? Does anyone have any ideas?

Hannah
Posts: 287
Joined: Tue Nov 15, 2005 3:59 pm
Location: Little Rock, AR

Postby Hannah » Sun Oct 22, 2006 9:54 pm

Hi Sherri,

Is the location of the spot the same as the location of the original tumor in the lung? If not, do you know what happened to the original spot(s) in the lung? Was the original lung tumor ever biopsied and definitely diagnosed as cancer? If not, doctors probably assumed it was cancer because of the liver spots, but it is possible that it never was cancer to begin with.

There are many things that can "light up" a PET scan - even past pneumonia or a smaller lung infection can do it. The doctors should absolutely know this and should have explained it to you from the very beginning. It is critical that you get an accurate diagnosis about his lung so that you can approach his treatment correctly, and it sounds like you are on the right path to figuring this out!

The good news is that they did a biopsy, I'm assuming on the larger "golf ball" part, and it came back negative for cancer. Since the doctors are stumped, I would ask for a second biopsy just to be sure - labs do make mistakes, and if this is definitely cancer then you want to know asap - again, a correct diagnosis is critical to your husband's treatment. Don't let the doctors assume that they know what is going on - force them to try every which way to figure it out, even if they have to repeat some tests to be sure.

A few questions - is your husband getting the CT and PET scans on the exact same machines that they used before? Have the machines been serviced since he got the last scan? Using different machines means that the scans can show up in different ways. Sounds strange, right? All machines should be the same and show the same things, right? That is not always the case, so just double check and discuss it briefly with your doctor.

A couple of other questions too - Where is your husband being treated? I am assuming that the doctors there felt that neither the liver or lung tumors were resectable (surgically removeable) at the time your husband was diagnosed? Are they doing chemo with the idea that it might reduce the size of these tumors so that they can hopefully operate on them later? That should be the plan (as long as that is what your husband wants to do) and if it is not, I would start asking a lot more questions.

I would also be sure that you have a good second opinion (at an NCI-designated cancer center if at all possible) to make sure that the tumor(s) he already has can't be taken out surgically. If they can possibly be removed, that is the best chance for long-term survival. If they can't be taken out at this time, the goal should be to try to find a chemo that works to reduce the size in order to get rid of them. Again, surgical removal of the tumors should be the goal because that offers the very best chance of long-term survival.

There are increasingly more options for removing tumors from both liver and lungs - although they may not be an option for him right now, you might want to start looking into things just a little bit so that you are prepared (in your spare time - haha!). Check out radiofrequency ablation (RFA), which can be used on both the liver and lungs; Sir Spheres (www.sirtex.com) which delivers internal radiation to tumors in the liver; and chemoembolization, which delivers drugs directly to the liver in greater concentrations than IV drugs. There are others also - don't beat yourself into the ground doing research, but maybe look around a little bit and ask doctors where your husband would need to be in order to receive one of these treatments. I bring all of this up because if the lung truly does not have cancer, and it is all confined to his liver, that could mean that he could be a candidate for some of these procedures.

As for his fever/infection - there are a lot of reasons that he might have had a fever. Chemo really does a number on the body's immune system, making it much more vulnerable to infections. Oxaliplatin is especially hard on the bone marrow - it decreases the white blood cells, making patients on it even more likely to get sick (flu-like symptoms are very common). Also, the longer you take oxaliplatin, the worse the side effects can be - so it is possible that this only came up after he stopped taking it. It is also possible that you will never know the exact cause of his fever, and you will just have to move past that and hope that it stays away.

Do not be afraid to be aggressive in your research, ask lots of questions of your husband's doctors, and post any questions/issues here. Sorry to throw all of this at you at once - I know that it's a lot to take! Please let us know more and ask as many questions as you want to so that you get the information you need!
:)Hannah
Hannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27

JasonTR
Posts: 10
Joined: Sun Oct 22, 2006 4:28 pm
Location: Prairie du Sac, WI

lung 'tumor'

Postby JasonTR » Sun Oct 22, 2006 10:59 pm

Thank you, Thank you, Thank you for your insight.

Yes, the lung tumor is in the same spot on the right lung. The original tumor was never biopsied. We'd asked, but were told that because it showed up in the PET Scan, that it was cancer. So, there is a possibility that it was never cancer to begin with and we've always wondered that. We didn't know other things could light up in a PET Scan ... good to know that.

We've only had one PET Scan. I'm not sure about the CT Scan machines. This third CT Scan was done during the hospital stay, so it's possible that it was a different machine than the clinic one, but maybe not. (The clinic is attached to the hospital) It's another good thing to know and i'll ask.

We're being treated at the University of Wisconsin-Madison. We're told the tumors are too large for surgery at this point and that surgery is our goal. The lung was 2.6cm and radiofrequency ablation was mentioned earlier, but now that it's so radically changed, i'm not sure if that's an option. The liver tumors are 6.5cm and 14.6cm. In early September, Jason was going to have a chemoembolism in the liver. They went in, but the blood vessels to the tumors were so small or dead that they couldn't deliver any of the dye or chemo. So we thought that was great news. I was sure the CT Scan would show that, by October, the tumors had shrunk some, but they hadn't. Do you think that's odd?

We've been satisifed with UW-Madison and it's so close to home that we've resisted going somewhere for a 2nd opinion. We have been consulting over the phone and email with a doctor at MDAnderson. We now think that we'll get through these next rounds of Irinotecan/Cetuximab, get the next scan, and then decide if we'll fly to Houston. We're thinking that he won't see us if we're in the middle of a treatment cycle here.

Again, thank you.

Hannah
Posts: 287
Joined: Tue Nov 15, 2005 3:59 pm
Location: Little Rock, AR

Postby Hannah » Mon Oct 23, 2006 10:37 pm

Hi Sherri,

Yes, that definitely seems odd to me about the liver too - with very little blood supply I would hope that they might have shrunk also, but I guess tumors often don't act like we think they should! But it is also good news because it is possibe that the lack of blood supply is what kept them from growing during the first cycle of chemo. Depending on how recently he had taken Avastin prior to trying the chemoembolization, the lack of good blood supply could have been an effect from the Avastin. Now that he is off of Avastin, I would discuss trying chemoembolization again as soon as possible, or maybe Sir Spheres (SIRT). I think I have heard that patients need to be off of Avastin for a mininum of six weeks prior to attempting these procedures, but I'm not 100% sure about that and I don't think there is a hard and fast rule.

For right now, I would definitely ask for a repeat PET scan to look at the lung spot. Since your husband hasn't had one since his initial diagnosis, that might shed some light on what is happening now in his lungs. With the suspicious CT scan, I would think a PET scan would be automatic anyway.

I would also still ask for a second biopsy to be done on the lung - whether that is cancer or not could become very important when doctors are considering his eligibility for other treatments, and so you want to know for sure (or be as sure as you can be).

If it is cancer in his lung (or even if you can't really tell if it is or not), I would seriously discuss RFA again. 2.6 cm sounds pretty big, but it is certainly within the eligibility criteria for lung RFA, although the smaller spots could be a problem. Find out exactly why they didn't do RFA in the first place (they were probably hoping that the chemo would shrink the tumor first) and find out exactly what has changed now. If he is eligible, you might consider doing RFA.

It sounds like you are doing the research you need to do and are in good hands. Have you talked to the doctor at MD Anderson about your husband's new situation? Also, do you mind telling me who you have been talking to down there? You might want to go ahead and just ask him/her if you could get another opinion while your husband is doing the current therapy. It might be okay with them, and even if you decide not to go down there now, at least you will know if you have that option.

You also might want to look around for other surgeons with whom you might want to meet or at least talk to. It is true that with the size of the liver tumors they probably would need to shrink before they are operable, but different surgeons have different ideas about what they are willing to operate on. Also, just because you are happy at UW doesn't mean that you wouldn't find someone with an approach you like better somewhere else (at MD Anderson or elsewhere).

I hope this helps a little bit. Just keep doing what you are doing because you are doing a great job! And keep asking whatever you need to ask.
:)Hannah
Hannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27

Hannah
Posts: 287
Joined: Tue Nov 15, 2005 3:59 pm
Location: Little Rock, AR

Postby Hannah » Tue Oct 24, 2006 12:56 am

Also one other thing - see below. My mom was reading over my shoulder when I was posting tonight and forwarded me this info about Univ-Wisc that she just happened to read right afterwards. She thought you would want to know about it if you don't already...

:)Hannah


Hannah -- for some reason I happened to click on this saved article on my desktop just now -- a possible resource for the person on the Colon Club Board who is in Madison.
XXXOOO Mom


Center for Patient Partnerships web site is http://www.law.wisc.edu/patientadvocacy/

Here's their Purpose:

Center staff, students and volunteer professionals help patients and families overcome a wide variety of concerns and challenges as they negotiate today’s health care systems. We help patients and families get information about diagnosis and treatment options, insurance coverage and billing issues, employment and disability questions and conflicts.
We help patients make their own decisions through careful, informed deliberation, and we help them advocate for the care they need, with providers, payers, and others.

We do not charge for our advocacy services.

Patient Advocacy

Center staff, students and volunteer professionals help patients and families overcome a wide variety of concerns and challenges as they negotiate today’s health care systems. We help patients and families get information about diagnosis and treatment options, insurance coverage and billing issues, employment and disability questions and conflicts.
We help patients make their own decisions through careful, informed deliberation, and we help them advocate for the care they need, with providers, payers, and others.

Services Provided

Information and services are intended to empower patients to make decisions, in partnership with providers, about the care they need and want. The Center advocates for patient choices and preferences with health care providers, insurers, and other parties. In general, "advocacy" will focus on problem solving and communication to help patients and providers make good decisions together, and for patients to then get access to the desired care or treatment. This may include advocating for a patient with providers, insurers, and other parties in informal problem solving or grievance hearings. Common concerns include:

* Understanding diagnosis and treatment options
* Getting an independent, thorough second opinion
* Securing coverage for the best care available
* Unraveling billing and insurance mysteries
* Navigating illness-related employment challenges
* Accessing federal and state benefits including disability
Hannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27

jana
Posts: 7
Joined: Tue Oct 10, 2006 12:26 pm
Location: Texas
Contact:

Postby jana » Tue Oct 24, 2006 10:24 am

Sherri,

I am a colon cancer survivor (stage 4) and a doctor. I went to undergrad at UW-Madison, and a close girlfriend of mine did residency there. I don't know about the oncology department, but the medical center there is GREAT. I get all my care at MD Anderson, because I am now a texan.

I think a second opinion is very important to help determine best treatmetn options. The CT scans are ONLY as good as the radiologist reading them. The radiologist at MDA are typically much better than other centers. I don't know why they wouldn't see you "in the middle" of treatment... treatments change all the time depending on what the scans show...

PET scans light up any site that metabolizes glucose faster than the rest of the body. Cancer does this, but ANY site of inflammation/infection also lights up. Pet scans have LOTS of false positive results.

Good luck to you and your family. It is a tough battle, but it sounds like you are doing it right... I would go to MDA, and just make sure your not missing any other options. Also, MDA does a LOT of research with new drugs... maybe you all could look into that as well if the chemo isn't helping enough.

Stay strong. jana
Live every moment to it's fullest.

Eileen
Posts: 19
Joined: Sun Jun 04, 2006 7:00 pm
Location: Pennsylvania

Second opinions

Postby Eileen » Tue Oct 24, 2006 2:30 pm

Very informative postings! A friend of mine very recently called MDA regarding a second opinion for her Mother who was just diagnosed with Stage IV and has not yet started treatment. She was told by MDA that they do not do second opinions. I was surprised to say the least.

Sherri,
Sending prayers and well wishes for your hubby.
Love and Prayers,
Eileen
Stage IIIB

Guest

Re: lung 'tumor'

Postby Guest » Thu Dec 28, 2006 6:00 am

JasonTR wrote:Firstly, i'm so glad to have found this site and thank you for such a wonderful resource. My husband was diagnosed with Stage IV colon cancer (with tumors in the liver and lung) in May. He was originally on Avastin/Oxaliplatin/Leucovorin/5-FU with an 46-hour infusion. There wasn't any change in the liver or lung after 7 treatments, so they've just switched him to Irinitocan/Cetuximab and this is week 2. Before switching treatments, he was hospitalized for a week with unexplained fevers. During this time, they took a CATscan of the lung and noticed that it had changed considerably in the past month. While before it looked like a golf ball, it now looks like a golf ball with a hollow center and many more smaller lesions surrounding it. They took a biopsy thinking it was the source of infection, but it came back negative. The pathology report also came back negative for cancer, altho it had shown up in our PETscan as cancer. The doctors are confused, and that makes me concerned. Has this happened to anyone else? Does anyone have any ideas?


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