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Old 07-31-2013, 02:21 PM   #1
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Pet scan results

Ok rewind back to march I was having pelvic pain so my dr ordered a ct scan. I get the results and it shows a uterine fibroid, ovarian cyst and lung nodule. So we follow up with gyn and he does several tests and rules out anything bad on that. Dr ordered follow-up ct scan to monitor the lung nodule.
I had follow-up ct on my lung and they said it looked suspicious so they sent me to a pulm. dr well he orders a PET scan which I had today and within 2 hours from it he calls me with the results! Which are: The lung nodule lights up, I had lymph nodes light up brighter then the nodule, and I had an area in my pelvis light up. He ordered a biopsy of lymph nodes scheduled for tomorrow morning. I am very scared I am only 26 and I have 2 small children.

 
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Old 08-01-2013, 10:43 AM   #2
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Re: Pet scan results

Of course this is scary, but please try not to panic. Your kids need you to be strong, and you need to be strong for yourself, too.

Even if it does turn out to be a type of cancer, the treatments nowadays are much more specific, side effects can mostly be alleviated, and many, many cancers can now be completely cured. Of course, no one wants to go through this, but there often is light at the end of the tunnel, and I am living proof of that. I'm an 11-year survivor of third stage CUP (cancer of unknown primary) and an eight-year survivor of bladder cancer. Two different cancers, two different types of treatment, and here I am, eleven years later and doing very well.

So, don't panic, don't give up hope, and keep coming back to keep us posted and get some support here. Once you find out exactly what this is, you may want to post on a more specifically related board (see the list of various boards under the general heading of Cancer.)

On the other hand, maybe this isn't cancer? There is also something called sarcoidosis, which would show up on a scan. That is also usually treated by pulmonologists.

Whatever it is, I wish you the best of luck for a good outcome.

Ruth

 
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Old 08-02-2013, 07:30 AM   #3
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Re: Pet scan results

I was pretty freaked out when I typed the first message but I didn't panic in front of my kids because I do not want them to see me like that! I had the biopsy yesterday so I will not know anything until next week. I have decided that "It is, what it is and if that means cancer, well then it is not time to freak out, it is time to make sure my head is in the game to fight!" I really enjoy reading stories of people who have fought for so long and won or are still fighting the strong fight. Unfortunately the only person that I have known in person with cancer lost her battle just 5 short months after her diagnosis. I think that had something to do with my freak out a little bit. She did not have good drs until she moved here from another state and by that time they said she had it 2 years and thats why she lost her battle because not treatment and having it for 2 years she had it throughout her body!
Anyways on a side note my kids are my strength and they deserve a mom who will fight with all she has! Thank you so much for your reply I love your story its awesome!
Also if it is cancer and I find out what kind I will be sure to post on that board as well thanks so much!

Jamie

 
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Old 08-02-2013, 11:42 AM   #4
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Re: Pet scan results

" have decided that "It is, what it is and if that means cancer, well then it is not time to freak out, it is time to make sure my head is in the game to fight!"

Jarnie, that is the attitude that will get you through this~! Good for you!

And yes, sometimes when treatment is delayed, it gives the cancer a chance to spread, and not only to spread, but to become more aggressive. I'm a big believer in hitting it with blazing guns right from the beginning, because it's so much easier to knock it out for good at the beginning, before it becomes that aggressive. I'm also a big believer in chemotherapy when necessary, because surgery and radiation can only get a small area and if you have metasteses, you need to be treated systemically. Those of us who have survived the type of CUP I had all chose to have chemo, along with surgery and radiation. Those who opted out of chemo had recurrences fairly quickly, and they did not have good outcomes.

Obviously, some cancers are contained and all that's needed is surgery and radiation, so I'm not saying "Whoa, EVERYBODY needs chemo", but I wish so many people weren't afraid of it. Nowadays they can, for the most part, eliminate some of the feared side effects, like nausea or diarrhea or constipation, and once you get rid of those, then chemo isn't so bad.

I think your kids are lucky to have such a wise Mom, and I'm certain you'll be able to help them through this, as well as yourself. Kids are very perceptive, and they'll know something's up, so I don't advise saying that nothing's wrong. But they will adopt your attitude so as long as they see you dealing with things calmly, they will be calm.


And please do absolutely let us know what's what as soon as you find out. The board is a place to not only find information, but to find emotional support as you travel this road. Someone in my mother's breast cancer support group once said, "the journey makes us one." How true that is.

Ruth

 
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Old 08-03-2013, 09:29 AM   #5
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Re: Pet scan results

I think the hardest part right now is waiting on the results of the biopsy. But we are doing lots of fun things this weekend with my kids too keep busy and not think about it much. Thanks so much for posting I appreciate it so very much.
Jamie

 
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Old 08-04-2013, 09:06 AM   #6
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Re: Pet scan results

Yeah, waiting is was the hardest part for me, too. Keeping busy is good. Hang in there!

Ruth

 
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Old 08-06-2013, 05:51 AM   #7
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Re: Pet scan results

Ok I just received a printout of the radiologists report from my PET scan. This is what it states:

The right lower lobe pulmonary nodule is abnormally accumulating FDG, max SUV 5.1

There is a hypermetabolic lymph node in the right infrahilar zone. This is located between the bronchus intermedius and esophagus. On the CT component this measures about 22 mm and is consistent with hypermetabolic adenopathy, max SUV 7.8. Smaller and less hypermetabolic nodes are also present in the right hilum and right paratracheal zone, max SUV 3.8.

ABDOMEN AND PELVIS: In the left adnexa there is a hypermetabolic lesion, max SUV 10.9. This corresponds to a low density mass measuring approximately 3.8 cm.

Interestingly there is a similar though smaller lesion on the right adnexa however, the right-sided lesion does not accumulate FDG whatsoever. Therefore, the unilateral abnormal FDG uptake of the left adnexal lesion is of concern.

IMPRESSION: Picture of metastatic malignancy with a hypermetabolic right lower lobe ill-defined nodule, right hilar and mediastinal adenopathy. Also evidence of a hypermetabolic left adnexal mass. Attempt at sampling the right lower lobe nodule could be made with CT. The pelvic lesion would necessitate laparascopic evaluation.

Sorry I might have misspelled a couple of words! That it right off the report! Also I received my biopsy results back and they said everything is fine not cancer we want to see you back in 3 months for another CT of the nodule. Well I also have the path report and I feel like I need to get a 2nd opinion. What is the chances of all those areas lighting on a pet and nothing being cancer? If everything really is nothing then great but I don't want to be pushed aside because I am young and the chance is so low when the pet is positive I feel I need further testing. Maybe I am just overreacting! Here is the path comment:

Specimen A and C contain predominantly benign bronchial epithelium and debris with a few scattered lymphocytes in the background. I cannot be certain that a lymph node was sampled. Specimen B contains lymphocytes, consistent with sampling from a lymph node. Although metastatic carcinoma is not identified, this does not exclude malignancy as there can be issues of sampling error. Also, FNA biopsy is an insensitive method for diagnosis of lymphoid neoplasms.

Any thoughts on what I should do? Thanks in advance!!

 
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Old 08-06-2013, 11:49 AM   #8
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Re: Pet scan results

Well, at this point, I would definitely get a second opinion and I would definitely find a doctor who has experience with sacrcoidosis. It sounds like this could possible by sarcoidosis. If so, I suspect your pelvic pain was from the fibroid and cyst and all this other stuff was discovered by accident from the scans.

Of course, I am defintely not a doctor, but I can tell you that sarcoidosis frequently shows up like this, and not too many doctors are familiar with it.

But, definitely, you need a second opinion.

Ruth

 
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Old 09-01-2013, 06:00 AM   #9
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Re: Pet scan results

I saw my primary doctor and she also did not feel comfortable with the results. She contacted a gynecological oncologist and also ordered a CA-125 screening which came back in the normal range. The onc that she spoke with said that with the CA-125 coming back in normal range it would not be primary ovarian but he thinks it could be a metastasis from somewhere else. So she sent me to a different specialist and he made me feel much better about everything. He said it is not a good idea to wait 3 months for another CT to find out what is going on. He said with my age and history it is very unlikely that it is primary lung cancer and that whatever is in my lung is coming from my lymph nodes. So the first thing he said was that he thinks lymphoma which he said can be very hard to diagnose. He also mentioned sarcoidosis as well. So I am having another biopsy done that will be ultrasound guided so they can make sure that they actually get the lymph node using core needle biopsy so they can get a bigger sample. He wanted to take they whole lymph node but is afraid that they will not be able to doing video assisted and they would have to open me up and does not want to put me through that unless it is absolutely necessary. So I am awaiting date and time of the next biopsy and the results. Just wanted to update.
Jamie

 
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Old 09-01-2013, 08:27 AM   #10
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Re: Pet scan results

Thanks for the update, Jarnie. I'm really sorry you're having to go through this, and it's really too bad that it takes so long sometimes to figure these things out. As in our previous posts, the waiting can really get to you, but it sounds like you have a very good primary care doctor and the second specialist who mentioned lymphoma and/or sarcoidosis sounds good, too. Glad you didn't listen to the one who said wait three months!

Whatever this turns out to be, hopefully there will be a successful treatment. It's truly amazing how many cancers they can cure now, and even sarcoidosis can be managed quite well once they know you have it, so hopefully in either case you will be well taken care of.

Keep us posted, Jarnie.

Ruth

 
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