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Pending diagnosis

DFish
Posts: 2
Joined: Nov 2007

Is there anyone going through what my husband and I have been going through? It's been almost a year and we have only, just recently, been told that they are suspecting he has lymphoma. We are trying to find out how many others may have been down this agonizing path of waiting so long for a complete diagnosis.

Folks24
Posts: 107
Joined: Feb 2007

I'm in the same boat!!! I went through 2 yrs of lots of testing, etc before I finally got told I had lymphoma. My gp didn't like my blood numbers & could feel my lymph nodes, and kept sending me to diff drs. I'd get done with one dr, think I was fine and boom, my gp would send me to another one. 2 yrs on a emotional rollercoaster. I've been seeing an internal med specialist for 3 yrs now. My numbers keep creeping up but are not high enough "& I don't have bad symptoms yet" to do any treatment. So they just think of new tests every yr to give me. They think I have such an early stage that nothing has "hit their tests" to pinpoint. It is like they can't prove it yet but know. My gp is a bit po'd but that is they way lymphoma is at times. I've been told my #s could suddenly jump, just slowly progress or not progress at all. Almost like a time bomb that you don't know when it will go off. I "think" I've had every test except the PET and the bone marrow.
Sorry to hear someone else has to or has gone through the same stuff I've had to. You are definitely not alone. Good Luck!

DFish
Posts: 2
Joined: Nov 2007

Thank you, Folks24, for responding. Your story sounds similar to ours. Have you had a biopsy of any sort yet? What kinds of symptoms do you have? My husband has a lesion on on his pelvis, as well as one in one of his kidneys and a cyst in the other. He swells occasionally, has had a cough ever since he had pneumonia in July, a rash that comes and goes, his breathing is compromised when he bends over, his abdomen is "puffy" and has lumps up and down the large veins in both his arms. He's tired all the time and has night sweats (they have been relentless this past month). They have been monitoring things by way of CT scans but now, apparently, not so much because of the lesions they discovered, but because of the lymph node changes that have been noted since his first one in February. His blood and urine tests all sound like yours . . . just slightly abnormal, but alarming, and they just continue to climb. He has always taken such good care of himself but hasn't felt good for years now. He's been rushed by ambulance twice in the last five years for what they thought was once a heart attack and the last time because of something I can't even pronounce that seemed like a ridiculous reason for what happened. They've sent him to urologists and nehprologists (who conflicted with each other's assessment of his medical condition). We've been fighting with HMO issues, doctors, nurses, receptionists and people who just don't understand. He can work (even though he's exhausted) and we do things but all the while this black cloud just continues to shroud our everyday life. The people at his job seem to understand but that has not been the case at mine. This has all become just too much for us to bear. His next scan is this coming Friday (the 16th) and, to be honest, we are, at this point hoping for bad news versus having this scan come back "clean". There is something soooo wrong with him and the thought of having to do any more of this ridiculous, exhausting begging is now scarier and more horrible than the news we fear the most. I'm so grateful for your message. It's sad, but comforting, to know there is someone else out there who has been where we are. How sad that people are subjected to so many frustrating situations that only exacerbate the physical and emotional challenges of being sick. They've told us that if they note any changes on this scan they will do a biopsy, which will be extremely frightening. If they note no changes, then what? We'll be left to do what we've already spent a whole year doing . . . begging for help. I don't mean to whine, but this is becoming more difficult to handle with each passing moment and I found out last week that there are virtually no support groups we are eligible for without a diagnosis of cancer. With all that a person hears about early detection, early detection, it contradicts everything you hear about treating cancer early. How can all this waiting and doing nothing be helping things? It wasn't until we pressed our doctor for an explanation as to what all this scanning and all of these strange blood results meant that he admitted they were now more concerned over the lymphadenopathy they've seen since last February versus the possibility of kidney disease, which is what they tried to use as an explanation for all of this. His kidney function has been normal all along, outside of the microscopic hematuria and proteinuria that persists. We finally grew tired of hearing that that this was all due to kidney disease. It just didn't make sense to us, given the blood abnormalities we've seen and the imaging they kept wanting him to have done. Kidney disease doesn't take this long to evaluate and/or treat and it certainly isn't diagnosed with the things they keep suggesting he have done . . . if they suggest anything at all. We have had to literally beg for every scan and every blood test he's had since they discovered the lesions they found and are tired of being both patient and physician. Good luck with your medical challenges. We will keep you in our prayers and, again, thank you for responding to my message.

Folks24
Posts: 107
Joined: Feb 2007

Sorry you all are having such a hard time of it. Yeah, early dection! Surprised that you have not had a biopsy as yet. I had one right off but negative. I've also had numous blood tests - even the one that gets down to the DNA., CT scans, MRI scans, and this year a needle aspiration on a node in my neck. The CTs and MRIs are good to have as they will have a "base" scan.
It is soooo frustrating when something is wrong and they can't find the cause of it. My gp KNEW something wasn't right (due to blood#s and large lymph nodes) and "darn it" somebody was going to tell him what it was! Nobody would tell us anything until a couple yrs ago. Gp still has to get after them to share test results! I now get monitored yearly. Basically I get a bunch of blood tests & maybe they come up with some other test to try or MRI or CT again.

I must be "lucky" if that is really the word I want to use. I have had minimal symptoms - I get hot flashes, some nite sweats and easily get sinus infections (about 5x yrly). Anemia goes along w/lymphona so be sure to take vitamins every day. Otherwise I feel fine expect my blood #s are really odd. It is the lympacides, white cell count and another one that are abnormal. I've been told it is definitely lymphoma but their tests won't "pop" to give them an Aha!

I was told because the treatment is so intense and they don't know the "type" that I will not be treated until my numbers get in the hi-20s or I start having bad symptoms. They tell me this could go on for quite some time or I could suddenly change. Urrr! But now that I know and have accepted it, it is easier for me emotionally. Not knowing or being on the Yes/No merry-go-round drove me nuts for awhile.

All the tests he is having is due to they just don't know. Hang in there and be proactive with the drs. I know you are afraid to ask and have possibly your worse fears confirmed but that is better than not knowing. The dr and patient should work as a TEAM - the patients nowadays has to get more involved. Ask about the test result, why, any other tests, what can we do for the here and now to help the patient until treatment, etc.
I used to be the caretaker for my folks. I've had to get after new drs numerous times who basically wanted to pat my mom on the head and send her home. I'd refer to myself as the bulldog at her feet - they might get something past her - but nothing past the ole bulldog. :)

Be an advocate and it will help. Good Luck.

Racht's picture
Racht
Posts: 40
Joined: Nov 2005

Hello. I have been through what you and your husband are now going through. Please, I want to tell you that regardless of diagnosis there are some things you can do to help yourself. Starting with your fork and knife. More evidence these days suggests that an excess of animal protein (including processed dairy) promotes cancer. At the same time a diet high in antioxidants (fresh fruits and veggies) and legumes, whole grains, nuts and seeds does more to prevent cancer and any chronic disease. You can find very helpful info at cancerproject.org. They will probably send you a lot of free material if you just tell them what you're going through. Also, fish oil, a good probiotic and a fast dissolving multi-vitamin are all very essential things for every body, every day. I am doing all 3, in addition to a whole foods, plant based diet. Sugar also feeds cancer so eliminate it from your diet. Stay hydrated. We need 1/3 of our body weight in oz of water daily to stay hydrated. Start juicing (get a good quality juicer) and juice regularly. the best kind to get are the masticating types. omega and champion are 2 brands that I know are good. the masticating types keep most of the nutrients in tact and that's what you need, especially now.
I recommend consulting with a naturopath- in addition to you conventional dr. Why not get all sides of the issue? Your objective needs to be WHOLE health, not just treating a tumor or the lack of health. We end up sick because we LACK what our body DOES need or we have TOO MUCH of what it doesn't need. There's a ton of science to back that up. Check out Eat to Live by Dr. Joel Furhman and The China Study by Dr. Campbell. Both are excellent resources and eye-openers. I wish you both peace during this very difficult time. Waiting was always hardest for my family and I. I know what you're going through. But I wish I knew then what I knew now. You'll be in my prayers

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