Mar 19, 2013 - 2:28 pm
Hi there, my name is Sherry & I'm 41 years old. I'm a single mom of 4, they're all teens.
First I want to say that wherever you are in your journey, my heart & prayers go out to you. My family has been through a lot this past year, we lost my 38 year old brother to stage 4 lung cancer 6 months after diagnosis, and now I'm going through this. I'm hoping to find some support & maybe even someone who has been through what I have so far in this ordeal. I'm at the "wait and see" stage after $41,000 worth of tests & surgery & we all know how much we love to wait. (Thank God for insurance, my part is "only" $1,200 so far) I apologize in advance for the long story. Here goes...
On 2-14-13 I went to the ER for chest pain/pressure & pain in my right shoulder blade. They ran a CT with and without the IV dye and my heart looked fine, but they discovered 2 spots on my right lung and multiple enlarged lymph nodes (over 2cm) in my right axilla and the right side of my mediastinum. (I think 8 total) They admitted me & ran about 30 different blood tests for viruses & other things it "could be". Blood work was ok except my red blood cell count/iron is low which I've never had before. Ultimately they sent me home with appointments for a mammogram and a PET Scan scheduled for the following week.
I will quote the PET scan results here so I don't mess up explaining it: "No metabolically active nodule or mass is seen in the right or left lung. There are two enlarged hypermetabolic lymph nodes present within the right axilla, the largest of which measures 2.4 cm in diameter & demonstrates maximum SUV values ranging to 9.6. These are likely malignant or metastatic in nature. There are enlarged hypermetabolic lymph nodes present in the mediastinum involving the middle mediastinum in the right paratrachial & pretrachial space, precarinal space, subcarinal space and bilateral hilar regions. Representative adenopathy in the subcarinal space measures 2.6 in diameter & demonstrates maximum SUV values ranging to 5.6. These are also likely malignant or metastatic in nature." The rest talks about a spot on my ovary & that the other organs that are ok.
So based on this PET scan my PCP sent me to a surgeon to have the lymph node in the right axilla biopsied since it was the easiest to get to. The surgeon decided to do an ultrasound guided needle biopsy and asked me if my PCP had me see an oncologist yet. He hadn't so I decided to call an oncologist myself to see if they'd want to see me yet because things weren't moving fast enough for me. At their request I faxed the PET Scan to the office & they called me back wanting to see me the next day. He said a needle biopsy wouldn't get a big enough sample so he had my surgeon change it to an excisional biopsy. March 4th was the biopsy, and the node they took was 4cm! Pathology report came back basically saying "no definite lymphoma seen. Changes like these can sometimes be found adjacent to other abnormal lymph nodes." It said diagnosis was "Florid reactive hyperplasia with follicular lysis & progressive transformation of germinal centers." It also said "Polyclonal b-cell hyperplasia". The pathologist told my oncologist that diagnosis is usually seen in HIV positive patients. I'm HIV negative, with no behavior in the past several years to put me at risk for it, so we know it isn't that. (They ran a test when I was in the hospital 2-14 to verify this too just to rule it out) I did read that PTGC are associated with Hodgkin disease or sometimes it's lymphoma but they think it's PTGC. You can see why this is all so confusing to me.
I also had a call back from the radiologists office that did the mammo & they informed me they needed ultrasound of both breasts. (They were thinking lymphoma or breast cancer from the initial hospital visit) Plus an ultrasound of my right ovary because the PET scan picked up something on it but it was mid-cycle so I assumed it was ovulation. I wasn't worried about the ovary. All ultrasounds came back normal but I did see the other giant lymph node in my right axilla that's left. She measured it across & it was also 4cm.
So my oncologist has me on the wait & see path now unless I start getting more severe symptoms. He said that if the node had tested positive he'd take the same action anyway because if it's lymphoma it's super early & I'm not having many symptoms other than the enlarged nodes. He doesn't want to go into my chest to take the other nodes since that's a riskly procedure in itself from what I understand. So we're redoing all of the tests again in June & if they're still growing we'll decide where to go from there. At some point I heard the nasty word "bone marrow biopsy" but my brain was so scrambled by then I'm not sure when he would be serious about doing one. Probably after the next tests if they're still enlarged.
I apologize that it took me forever to get all of this out, is there anyone here who has been through this similar situation? I know that they could pull all 8 nodes and only 1 be positive for cancer, so I know I'm not off the hook just yet. Honestly I'm ready to handle whatever comes my way, it's just the wondering that's going to drive me insane these next 3 months.
Thank you if you stuck it out & read this whole thing. Hope to hear from you guys soon. Sherry
PS I sleep in a 72 degree house, I've been waking up at night overheated thinking someone turned the temp up only to find it's 68 or 69 degrees. I'm not sweating profusely so I don't consider this "night sweats" but I'm waking up hotter than normal. Is this an important thing to tell my doctor about?