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Confused with diagnosis. Please help!!

confusion_1
Posts: 5
Joined: Oct 2009

In December of 2008 I had surgery to remove a lump under my jaw. The pathology came back as atypical follicular hyperplasia with a subset of monoclonal b-cells. The pathologist defined this as possible follicular lymphoma in-situ. I was sent to an oncologist who did repeated PET scans. In April of 2009 we found a new mass in my neck that he decided to biopsy. The pathology came back with the exact same report. This oncologist then said, "well, it's not normal, but I don't know what it is." And he told me he didn't want to see me again. A new oncologist is just keeping track of the size of new swollen glands by physical exam, no CT scans or anything else. I don't understand this diagnosis. I always thought if you had any cancer cells in you then you had cancer!! I am very frustrated with the doctors and don't feel like anyone wants to put in the effort to figure out what is really going on with me. Has anyone ever heard of this or had this experience??

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Have you considered going to either an otolaryngologist (ENT) or perhaps a GI (gastroenterologist)? Both deal with the throat/jaw area. Oncologists are usually pretty good at saying cancer/no cancer.

confusion_1
Posts: 5
Joined: Oct 2009

The ENT is the doctor who performed both surgeries and referred me to the oncologist because the flow cytometry came back as lymphoma.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I am so sorry that you are being treated this way. You don't say if it is Hodgkin's Lymphoma or Non-Hodgkin's Lymphoma. For an oncologist to diagnose you and not want to see you again, that it just flat out WRONG! However, for the other one, to have done the PET scans, and to have the approach, keeping an eye on it, that would almost sound like Non-Hodgkin's. If you've definitely been diagnoses, if it is NHL, waiting and watching is a common approach. The reason behind this, is because chemo, is tough stuff to take. So, as weird as it may sound, they actually wait for the NHL to get bad enough to use the chemo rather than put you through it now.

I would be more concerned that your oncologist is not being more communicative. Are you being seen at a big hospital, or smaller clinic? Either way, there should be a social worker whom you could talk to. Explain the situation to them, and that you are confused, and would like some help to get more accurate information. They might be able at the least, get a nurse practitioner to explain what the doctor means. But you definitely deserve more info than you are getting.

Paul E. (Hodgkoid2003)

confusion_1
Posts: 5
Joined: Oct 2009

Thanks for the input. It is NHL. I guess it is the watching and waiting that seems troublesome to me. I don't like the idea of having this time-bomb in my body just waiting to go off. The oncologist is at a major university medical center and I guess just has no bed-side manner. When I see her next I will try to get my point across about being confused and wanting more information. It is hard to do when she is only in the room for about 2 minutes!! But I guess this is not an uncommon way of doing things.

tf168wife
Posts: 21
Joined: Mar 2009

Confusion - while I know that this happens, I certainly hope it is not common! I go to a major medical center (Mayo) for treatment of CLL, and my doctors spend as much time with me as I need them to. I'm sorry you are being treated this way, and I certainly hope that it gets better for you. Being 'dismissed' is the last thing we need! Please keep us posted, and hopefully we can be of some encouragement and support for you.

melaniejill's picture
melaniejill
Posts: 11
Joined: Oct 2009

time for new doctors! they sound clueless. where was that done at? find new doctors and specialist.. i know quite a few people who might can help direct your way. 2nd oinion 2nd diagnosis asap!!!

confusion_1
Posts: 5
Joined: Oct 2009

I live in Utah. Salt Lake City. Enough said as for what hospital this is taking place at. My problem is that this is my second opinion and I feel like the doctors think I am doctor shopping. (Although I don't understand what they think I am looking for, it's not like I am looking for pain meds or something.) I guess this is just what they call the watch and wait phase but the fact that they have never explained this to me and I only figured that out by coming on this website is what drives me crazy. Literally!! Driving me crazy!! I feel like I have to be my own advocate on this and am just very disappointed in the medical system, especially since I work within the system!! The last time I saw my Doctor (because I felt some new lymph nodes in my neck and groin) she said she didn't want to see me until they were so big you could see them! So it is a real struggle to find peace in the middle of the night, but thanks for your support even though you don't know me!
Amy

winthefight's picture
winthefight
Posts: 163
Joined: Dec 2007

I agree with Melanie. Sounds like you need a new Oncologist. He or she should be able to 1.) diagnose what's going on.
2.) Spend quality time with you. You deserve that. As a cancer survivor, you deserve to have all of your questions answered. If you have a 100 questions, you should have them answered.

This is your body. Please don't let these silly physicians boguard (side swipe) you into something you are not comfortable with. You are new, so you probably are thinking these are the pros, and they know what they are doing. Sometimes they do....sometimes they don't. Take it from me. My first Onco had no clue. As sick as I was, she was chasing her tail. I am now with a great Oncol. He answers my questions. If I don't understand, he draws me pictures so that I understand or he goes to the internet and prints out material so I understand.

What state are you in? Perhaps one of us can help you find a better facility. We are here for one another. We all care.

Take care. Be blessed

Gaz's picture
Gaz
Posts: 22
Joined: Oct 2008

You are so right "winthefight". This is your life. Don't let the doctors dictate something to you if you don't feel it is right. I had a friend that the doctors suddenly changed the periodicity and dosage strength of his chemo. He was told that this was just normal. I pleaded with him to find out why they changed their mind. He wouldn't because he figured the doctors knew best. Unfortunately, he died. Ask questions, be aggressive, take control. Make them accountable and always, always .... have faith.

bk1950
Posts: 43
Joined: Apr 2009

i had 2 biopsy's, first one in my back and 2nd. one in my stomach. the one in my stomach came back positive for follicular lymphoma. the reason i am telling you this is that my doctors told me it is easy to miss if you don't get the exact spot. if i were you i would get a 3rd opinion. you can check out your doctor ratings online at healthgrades.com or ratemd.com. i did this and found that my first choice (who was a very nice doctor) had a poor rating and my second choice was much better. don't be afraid, it sounds like you are ahead of the game even if it is cancer. i had to do the watch and wait thing with my first doctor for a long long time and when it was finally found as cancer i was still in the early stages. good luck to you, please keep us informed.

Gaz's picture
Gaz
Posts: 22
Joined: Oct 2008

When the doctors performed a biopsy on my liver, they missed. They offered to do another, but I opted for surgery. I did so because I wanted treatment ASAP. I didn't have faith that they would get the biopsy correct the second (third?) time. I was diagnosed with stage 4 NHL (lungs, spleen, liver, stomach and lymph nodes). The surgeon removed lymph nodes the size of hard boiled eggs in my abdomen (normally they should have been the size of your thumbnail). The oncologist said I couldn't start chemo with Rituxin for 6 weeks due to the surgery; I talked him down to 2. He said we would do CT and PET scans at the beginning and the end of 6 months. I talked him into also doing them at the mid point (3 month). He said we would do the treatment locally. I said we would do it outside his office (about 50 miles away). If it comes back (the odds are over 80% for me), then I'll deal with it. My wife an RN, ironcially the director of Hospice Nursing, keeps a close eye on me (I'm 53 years old by the way). The advice you have received, thus far, is sound. At the end of the day, however, you need to trust your instincts....your common sense....you are not alone and we are there with you.

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