Possible upcoming lymphoma or leukemia diagnosis. What to expect?

Posted by reginaf @reginaf, Oct 3, 2023

Hi folks. I have not yet been diagnosed but I am sure I am going to be soon, and I wanted to share my journey so far.

Last year, I went to see my gyno for heavy vaginal bleeding. She sent me off for scans on my uterus and ovaries to find the source of it, and there we discovered I had a very large ovarian cyst. She referred me to a gyno oncologist who was the head of the department at Strong Memorial in Rochester, NY. So, off I went, and the oncologist sent me off for more scans so he could get a closer look at the mass. After those scans came back (PET and CT), we learned that one of the lymph nodes along my paracaval vein had lit up and my spleen was enlarged to 15 cm, and I had significant hypermetabolic activity in both, as well as some hypermetabolic activity seen in my bone marrow.

The doctor believed that the lymph node and the spleen were the result of having the large cyst pressing against them, so he put me on the "watch and wait" and I had surgery to remove one ovary and the cyst. We waited six months, and then he sent me for another CT and PET scan. Both scans came back showing that the lymph node and my spleen were still enlarged, and still had significant metabolic activity, but neither had changed in the last year. The node and my spleen were still exactly the same size. So he sent me for a biopsy on the lymph node, which to my delight, came back negative.

I believed it was all over from there, and went in for my follow up, and my doctor informed me he was referring me to a lymphoma/leukemia specialist, which knocked the wind right out of me. I asked why because the biopsy was negative, and he said that the biopsy could have been a "false negative" and he just wanted to be sure that everything was all right since this was out of his area of expertise - which is of course, absolutely the right decision.

But that's not the end. I had a full blood panel done and my CBC came back showing that my white blood count was increased to 11.9 - citing the normal WBC being between 5 and 11 thousand. So I know that's not a huge jump, and I have also been very ill for the last year with sinusitis and long covid, and I know those can make your numbers jump a little bit as well.

So, after that novel, haha, my questions are, what should I expect when I see the leukemia/lymphoma specialist? I know everyone here is not a doctor, but did anyone else recieve a diagnosis that had similar findings like this? I have also had absolutely no symptoms, no night sweats, no fevers, no weight loss (I've actually gained weight from stress eating), no pain except some pelvic pain from the brand new ovarian cyst I am growing atm.

And if this does turn into a diagnosis, what should I expect for the future? I am trying to cover my bases and prepare myself for as best as I can. I lost my father to liver cancer in 2016, my mother beat breast cancer in 2017 - I am really hoping it's not my turn.

Thanks, everyone.

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@marytheresacll

I get blood drawn, set up with my general doctor and those results I can see because it's a pretty routine test. I will have to ask the specialist in December if there is a way that I can see my results from the bloodwork that they are doing. Thank you for your response. I need to investigate into FISH and chromosome analysis.

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Most medical practices offer portals for you to be able to see your information so I would expect your specialist will have a means for you to access the records of your visit.
If not, don’t hesitate to ask for a printout of your blood work. That way you have it for your personal records as well.

Is your specialist in the same medical system as your primary doctor?

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@colleenyoung

Hi @navygirl, how are you doing? Have you learned more about a possible CLL diagnosis yet? Has it been confirmed?

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Hi there
I can’t even read the results of course VA has not called

It is a FISH test?
Do not know how to read
Help 😜😜😜

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@navygirl

Hi there
I can’t even read the results of course VA has not called

It is a FISH test?
Do not know how to read
Help 😜😜😜

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Hi @navygirl I know you’re anxious to find out about the results of your testing however the best person to get answers from is your physician. Members in the forum aren’t able to interpret results or diagnosis illnesses.

A FISH test is one of the more common genetic tests. FISH is the acronym for fluorescence in situ hybridization and looks for possible chromosomal discrepancies in DNA cells.

It’s so frustrating waiting for answers! It’s perfectly ok for you to call your doctor instead of waiting for them to call you. Did you just see the results on the portal today?

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You mean this does not make sense (from my FISH)? I focused on the 2nd and 3rd paragraphs,

FISH analysis was performed using DNA probes (Abbott Molecular, Inc.) for detection of the most common abnormalities in CLL. Cells were hybridized for D6Z1 and the MYB gene on chromosome 6, the ATM gene on 11q, the alpha satellite region D12Z3 on chromosome 12, D13S319 and the LAMP1 gene on 13q, the IGH gene on 14q, and the TP53 gene on 17p. We examined at least 200 interphase nuclei with each probe.

We detected loss of one or both copies of the D13S319 region on chromosome 13 in 44.1% of cells; this corresponds to the chromosome 13 deletion seen in the metaphase analysis. For the remaining probes the results are consistent with normal patient findings.

Interpretation: Chromosome 13 abnormalities are seen in CLL, and are associated with a good prognosis.

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Have you checked out LLS.org? It’s a great resource for leukemia & Lymphoma.

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After a laborious process that I won’t bore you with, I was diagnosed with Central Nervous System Large B Cell Non Hodgkins Lymphoma seven years ago. I used to think I was a pretty decent Google MD. What I learned is Cancer is complex…super complex. I am not a MD or anywhere close to it no matter how good at Googling I am. Prior to my diagnosis, i would read my test results, and think I had an idea about what was wrong with me. I could never have diagnosed myself in a million years. My advice is to continue to advocate for yourself, but let the doctor that went to Med School, did a residency and likely a fellowship to diagnose you and develop a treatment plan.

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I am not trying to diagnose or develop a treatment plan nor advocating that anyone should do that. I am fortunate in that my oncologist called me or scheduled appointments for very shortly after test results should be available. That is not the case for marytheresacll who is left hanging until sometime in December. I would find that completely unacceptable if it happened to me. Two months!!!!!

Also, some of us have learned that the responsibility for reading reports and making sure our doctors are aware of key issues falls on us. That is not the situation with my oncologist but is with another doctor.

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@normahorn

I am not trying to diagnose or develop a treatment plan nor advocating that anyone should do that. I am fortunate in that my oncologist called me or scheduled appointments for very shortly after test results should be available. That is not the case for marytheresacll who is left hanging until sometime in December. I would find that completely unacceptable if it happened to me. Two months!!!!!

Also, some of us have learned that the responsibility for reading reports and making sure our doctors are aware of key issues falls on us. That is not the situation with my oncologist but is with another doctor.

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Thank you for your information njhornung. It is sometimes hard to ask the right questions from the doctors, when you don't have the knowledge. My doctor is doing some kind of genetic testing so hopefully it is the FISH test. I will definitely ask for the names of all bloodwork tests that have been done so far and probably try to insist on a few more tests. Our system in Canada is kind of broken and it is hard not to feel like just a number sometimes. Thanks to this forum I will be able to ask more knowledgeable questions. It is baffling to me that my wbc and lymphocyte counts have never leveled out and only continue to rise as normally there seems to be some time where things just kind of stay the same, but not in my experience. The answer is always, well you do not have swollen glands or spleen. So as people say here, you have to fight for yourself so going forward there will have to be more of that. Njhornung, how long have you had cll? How are you feeling?

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A year and half ago, I went to the ER with a non fully functional right leg. The blood work showed an elevated white blood count. When no other reason was found for this, I was referred to a hematologist last Sept. and almost immediately diagnosed with cll. I am very fortunate in that both my wbc and lymphocytes are relatively stable. In fact, the trend line for the wbc is slightly down while that for the lymphocytes is slightly upward. (Do not give a retired chemist a set of numbers and not expect them to be graphed.) I am only aware of the issue because of the blood work - no symptoms.

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Rereading the report from a CT angiogram in preparation for an appointment with my PCP tomorrow and came across that calcified mediastinal lymph nodes were found. Of course I had to look that up and saw that one cause is cancer. While I have no enlarged lymph nodes, I did send a note to my oncologist as this was buried in the report and she would have had no reason to even look at it. It is now up to her if this has any significance or not. Hopefully, it does not.

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