Hi Everyone-
I'm writing about my Mom. She has gone through a few very discouraging months and I was wondering if anyone could shed some light on a few questions I have. I should start by explaining that this all started last year. She was having some problems with her shoulder and through a series of test (MRI, bone scan, etc.) it was finally decided that she had Paget's disease of the bone. Also, due to an elevated M spike, they told her that she also had Monoclonal Gamopathy (which was a much better prognosis than what they originally thought she had - Mulitiple Myeloma). So, she was going regularly to the oncologist and in the meantime she developed terrible pain in her sacrum. After an MRI, they discovered that she had a fracture and what looked like a tumor. She then had another PET scan (the PET scan the previous year was negative) that showed multiple "lesions" all over the body. In the lungs, behind the kidney, in the peritinium, under the arm - everywhere. After three biopsies - a fine needle, a bone marrow, and a removal of a lymph node under the arm, all three came back negative for lymphoma. I should mention that all along her Oncologist has been telling her it's lymphoma. She is now in the hospital because last week she was admitted with horrible stomach pain. After a few tests they discovered that she has pancreatitis and an ulcer. They went in with the scope and took cells from the ulcer, and I guess they took some cells from the hip (marrow) again. They told her that they appear to be "malignant" cells, but no results yet (they should come tomorrow). Anyway, my mom is telling me that she has lymphoma (according to her Dr.) "everywhere". The question is: Can you have lots of involved nodes showing up on the PET scan and MRI, but not all being cancerous? These lesions, are they all usually cancerous? I am stumped. It is also worth mentioning that she has Hashimoto's and in the past had MANY stomach problems. I am beginning to think MALT lymphoma? I am extremely worried because her enzyme levels were up to 10,000 the other night. They finally put a tube down her throat to drain some of the acid. She is in rough shape, but she wants to fight whatever it is. That is what's the most discouraging to her - she wants to get a diagnosis and get on with it. Is there anyone here that can give me their opinion? Is lymphoma very hard to diagnose? Can the Dr. make a statment like this without definitive proof? She did have 2nd opinion and the 2nd Dr. concurred with the 1st in his prognosis/course of action "sit and wait". It seems like as soon as he decided that, her body said "no, I don't think so" and now she's dealing with the stomach thing. They are talking about starting chemo on Monday, thinking the biopsies will come back and they will have an answer. What if they don't? He's scaring her telling her that he has to treat the tumor in her sacrum before it shatters her bone, but they haven't even biopsied it!! She is now on steroids to try to shrink whatever she has. HELP!!!
Thanks for listening to me ramble.
:)Kathy

Hi Everyone-
I'm writing about my Mom. She has gone through a few very discouraging months and I was wondering if anyone could shed some light on a few questions I have. I should start by explaining that this all started last year. She was having some problems with her shoulder and through a series of test (MRI, bone scan, etc.) it was finally decided that she had Paget's disease of the bone. Also, due to an elevated M spike, they told her that she also had Monoclonal Gamopathy (which was a much better prognosis than what they originally thought she had - Mulitiple Myeloma). So, she was going regularly to the oncologist and in the meantime she developed terrible pain in her sacrum. After an MRI, they discovered that she had a fracture and what looked like a tumor. She then had another PET scan (the PET scan the previous year was negative) that showed multiple "lesions" all over the body. In the lungs, behind the kidney, in the peritinium, under the arm - everywhere. After three biopsies - a fine needle, a bone marrow, and a removal of a lymph node under the arm, all three came back negative for lymphoma. I should mention that all along her Oncologist has been telling her it's lymphoma. She is now in the hospital because last week she was admitted with horrible stomach pain. After a few tests they discovered that she has pancreatitis and an ulcer. They went in with the scope and took cells from the ulcer, and I guess they took some cells from the hip (marrow) again. They told her that they appear to be "malignant" cells, but no results yet (they should come tomorrow). Anyway, my mom is telling me that she has lymphoma (according to her Dr.) "everywhere". The question is: Can you have lots of involved nodes showing up on the PET scan and MRI, but not all being cancerous? These lesions, are they all usually cancerous? I am stumped. It is also worth mentioning that she has Hashimoto's and in the past had MANY stomach problems. I am beginning to think MALT lymphoma? I am extremely worried because her enzyme levels were up to 10,000 the other night. They finally put a tube down her throat to drain some of the acid. She is in rough shape, but she wants to fight whatever it is. That is what's the most discouraging to her - she wants to get a diagnosis and get on with it. Is there anyone here that can give me their opinion? Is lymphoma very hard to diagnose? Can the Dr. make a statment like this without definitive proof? She did have 2nd opinion and the 2nd Dr. concurred with the 1st in his prognosis/course of action "sit and wait". It seems like as soon as he decided that, her body said "no, I don't think so" and now she's dealing with the stomach thing. They are talking about starting chemo on Monday, thinking the biopsies will come back and they will have an answer. What if they don't? He's scaring her telling her that he has to treat the tumor in her sacrum before it shatters her bone, but they haven't even biopsied it!! She is now on steroids to try to shrink whatever she has. HELP!!!
Thanks for listening to me ramble.
:)Kathy
I know that you and your mother are very scared. If she has lymphoma, it sounds like Non-Hodgekins and the truth is that they tend to stage it according to whether or not the lymphnodes above and below the diaphragm have malignancy. Then they also measure this in quadrants as well. There is no need to biopsy a tumor that could shatter the the bone, the idea there would be to shrink it with either chemo or radiation or by surgery. As for the other areas, the doctors probably have a good idea what is going on but may have been a little surpised at the progression. Lymphoma is not at all hard to diagnose in the later stages. In the beginning the body has the capacity to fight the lymphoma and as such the symptoms may come and go and that may delay the diagnosis. That is why the doctors try to take the wait and see approach, because the body has miraculous recovery abilities. After a while, if the body can not fight off this disease, then chemo has to be considered or radiation in some cases. Each case is different and for different reasons. There are no generalities that can be made. Your mother is unique and will need treatment that will help her. That is possible when the doctors discover the nature of her lymphoma. The biopsy will tell them what type of treatment the sick cells will respond to.

Hi Katty,

This sounds like a very rough situation indeed and only experienced medical professionals who have in depth details can possibly shed more light on your mom's condition. What I can add is, if they took 3 biopsies and they all came negative for lymphoma, it's not very likely to be lymphoma. It can pretty much be other type of cancer, such as soft tissues sarcomas, bone cancer and possibly others. BUT, it might not be cancer as well. What you describe sounds similiar to a noncancerous disease called Sarcoidosis.

I don't know what your doctors' considerations are, whether starting chemo without knowing the cancer type is a good idea. I personally would would waited for the biopsy results as long as your mom's condition is stable and not deteriorating.

Good luck, I hope your mom gets pass this.

There is no need to biopsy a tumor that could shatter the the bone, the idea there would be to shrink it with either chemo or radiation or by surgery.

This is not true, because you do not know what type of tumor it is, and whether it is benign or maligiant. Unless there is a life-threatening situation such as in aggressive and/or advanced cancers, doctors won't just fire chemo or radiation to the patient. It is also due to the fact there are many chemo drugs and some suited for specific cancer types while they won't be as effective treating others.



As for the other areas, the doctors probably have a good idea what is going on but may have been a little surpised at the progression. Lymphoma is not at all hard to diagnose in the later stages. In the beginning the body has the capacity to fight the lymphoma and as such the symptoms may come and go and that may delay the diagnosis. That is why the doctors try to take the wait and see approach, because the body has miraculous recovery abilities. After a while, if the body can not fight off this disease, then chemo has to be considered or radiation in some cases. Each case is different and for different reasons. There are no generalities that can be made. Your mother is unique and will need treatment that will help her. That is possible when the doctors discover the nature of her lymphoma. The biopsy will tell them what type of treatment the sick cells will respond to.

I did not hear this theory about the body being able to fight lymphoma. As you probably know the main problem about lymphoma and all cancers in general is that the body fails to distinguish cancer cells from healthy cells, and therefore does not fight them. To my knowledge, when a lymphoma is diagnosed, unless it is of an indolent type (means it progresses very slowly, and even if treated relapse is usually followed) treatment is required. I don't believe conventional doctors follow this theory. The "sit and wait" approach is generally used when there is a vague or no diagnosis or in cases of an indolent cancer.