Frightened about possible diagnosis
Hi all,
I'm a 31 year old female. A year ago I was diagnosised with ovarian cysts, and my gyno sent me off for a PET scan to measure the cysts, because they were quite large on the ultrasound. On the PET, an enlarged lymph node was seen in my retroperitineum, and my spleen was enlarged to 15 cm. My gyno sent me to an gyno oncologist, and he said he believed the lymph node and spleen were due to the trauma of the large cyst. He took the cyst and my ovary out in January of this year, and once I recovered, he ordered another CT with contrast to see if the node and spleen were still enlarged.
The CT was done on June 27, and it showed that my spleen and the node were still enlarged, and my liver was also slightly enlarged to 19.5 cm. Now, no other nodes were enlarged on the scan, and the one that was enlarged had no significant changes. I have not lost any weight over the past year, I've actually gained weight (I'm rather obese), and I did suffer from nightsweats over the winter that lasted a few weeks and then went away. BUT, my bed is right over the heating vent and when the furnace goes on, it can get rather hot in my bedroom. So, it could have been that.
I'm seeing the doctor on Monday to go over the CT results, and most likely a biopsy will be the next plan of action, but I have to ask, has anyone else gotten a Non Hodgkin's diagnosis with these kind of issues? If it is the worst case scenario, what should I prepare myself for?
It's rather ironic. My mom dealt with stage 1B breast cancer five years ago - went thru chemotherapy, radiation, 2 surgeries, and just got the five year all clear back in May. I guess it's my turn now.
Thanks. Apologes for the ramble, I had to get my thoughts out.
Comments
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Hi ReginaMarie,
I am a bit confused, as nothing in your post says "lymphoma". Has any of the doctors you have seen actually said the word?
Obviously you are preoccupied, but maybe it is a bit too soon to come up with a diagnosis. I suggest you spend the next few days doing things you enjoy, taking your mind off your current preoccupation, and see what the doctor has got to say on Monday. At this point, there is no way to tell what that lymph node or those enlarged organs are all about. Might be anything, cancerous or not - there's just not enough data to determine what it is.
Do let us know what the doctor says and what next steps - if any - s/he recommends.
Kind regards.
PBL
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Hi PBL,
Sorry for sounding dumb, what do you mean "nothing in my post says 'lymphoma'?" No, no one has said the word "lymphoma" to me, my surgeon was expecting the swollen lymph node to go away and the swelling in my spleen to subside after I healed from my surgery and it did not. My brain went in that direction because I know lymphoma can cause swollen lymph nodes in the abdomen and the spleen and liver swelling up, so I got really scared.
My appointment ended up getting moved to July 31, so I still don't know anything yet.
Thank you.
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Hi ReginaMarie,
What I meant is that there are many potential causes - cancerous and non-cancerous - for an enlarged lymph node. Among other things, inflammation, infection, sarcoidosis, and various cancers (even in the absence of detectable primary tumors) other than lymphomas. Also worth noting, some enlarged lymph nodes may never return to their original size.
Depending on location, imaging may give an indication of structure - which can in turn enable doctors to figure out the likelihood of the cancerous nature of the lymph node - but a definitive diagnosis is made based on biopsy only. Until and unless a biopsy - preferably excisional (i.e., removing the whole node) - is done, there is no way to tell for sure.
What I will note here, based on what you wrote is that:
- there does not seem to be any significant evolution over the course of a six-month period, so, no urgent cause for worry, and if it is not easily accessible, it may not be worth the risk to operate;
- you do not seem to have any tell-tale symptoms of cancer;
- you do not mention what SUV the PETscan indicated, but I suppose that your doctor would have picked up on anything even remotely significant;
- your doctor has pushed your appointment date a month, which suggests that there is no particular cause for concern.
I hope this can help alleviate the anxiety while you wait for your doctor to tell you precisely what s/he has found and what further steps - if any - s/he recommends.
Kind regards,
PBL
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Sorry to hear of your worries. As to lymph nodes, think of them as tiny liquid lungs. They expand and contract according to need. Same with the spleen, which is essentially a giant lymph node. Ever go to doctor with a cold and doctor checks around your jaw? doctor was looking for enlarged lymph nodes - one of the pirmary signs of common infection. They may become a worry when we are aware of them and when we know that lymphoma can cause them to enlarge. Lymphoma generally arrives with unexplained weight loss, can't-get-out-of-bed fatigue, drenching/soaking total body night sweats, and spiking fevers. Not always, but that is pretty much the norm.
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Dear Regina,
I’m coming from the other thread. I’m sorry you and your mom had to go through all these difficulties. It’s good to hear that your mother is doing ok now, though. Still, it must be definitely hard to navigate through so many uncertainities at an age where you’re supposed to concentrate on your career and/or your family/romantic partner…
I agree with the previous posters, it’s too early to tell what your diagnosis is. Maybe -and hopefully- it’s nothing. But at least you know that you’ll have regular controls so you won’t miss anything.
Please keep us updated with your next appointment. Wish you best of luck!
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Hi Regina,
I experienced night sweats, had a swollen lymph node under my arm pit, then had a fever that did not go away. I started to then feel weak. I have always been a fairly healthy person. This all happened in a matter of a few months. Once the Pet scan was done, I had an enlarged spleen, enlarged liver and multiple swollen lymph nodes in my abdominal area. I was diagnosed with B Cell Non Hodgkin Lymphoma in February 2023. I had 6 rounds of chemotherapy. I had no radiation and no surgery. I am now in remission since June 2023. You are taking the necessary steps to find out what the issue is. I pray it is not cancer, however, if it is make sure you find a hospital that gives the best care. The hospital I went to was great and the staff was there for me every step of the way. I just turned 40 in June so being in remission was a wonderful birthday gift to receive. You will get through this.
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Although we pray it is not, "IF" it is a malignancy, one can do no better than to consult with the best of the best: any of the National Cancer Institute designated Comprehensive Cancer Centers. They employ the best and brightest, possess cutting edge medical technology and perform the research which advances medical science. At such a facility, one has the best opportunity for a good outcome. Had I not gone to such a facility, I would have been gone in 2009. In the US, find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find
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Hi PBL, thank you for your reply.
I'm copying and pasting what my PET scan from last year said about the SUV/FDG numbers.
- "There appears to be FDG uptake associated with the known right retroperitoneal ovoid soft tissue nodule currently measuring 2.3 x 1.6 cm with an SUV max of 7.5. "
- "The spleen is enlarged, measuring 14.7 cm in craniocaudal dimension, with diffuse heterogeneity of FDG uptake and a discrete focus of more intense FDG uptake in the anteroinferior aspect of the spleen with SUV max of 4.9, with no obvious corresponding abnormality on unenhanced CT images."
And yes, I have had no other symptoms. The night sweats went away and I've had no fevers, no weight loss, and even the results of the last scans didn't change much except my liver being slightly enlarged. I'm having a new PET done on 8/4 and then I am finally meeting with the doctor on 8/21.
Thank you again, and thank you for being so patient with me. :)
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Hi ReginaMarie,
This is only my understanding as a lymphoma patient with no medical degree: the uptake values indicated in your report from last year are rather moderate, and the writer of that report seems quite unsure of what they might mean ("there appears to be uptake associated with..." / "a discrete focus with no obvious corresponding abnormality...").
As previously stated, FDG uptake and enlarged organs do not, in and of themselves, specifically spell lymphoma, and may be related to any other issue - only a biopsy would yield an actual diagnosis. In the event of lymphoma, your absence of symptoms and apparent stability of findings over several months would point to an indolent strain, which means that there is no hurry in treating: many asymptomatic patients with verified lymphoma are simply assigned to "Watch and Wait", consisting in regular checkups until they develop sufficiently significant issues to warrant treatment.
Finally, you seem to be in excellent hands, since your doctor is methodically investigating your case, and if a biopsy is not feasible without risk, I would expect some sort of regular monitoring to be put in place.
I hope this helps you bear the wait with confidence; do keep us updated on your next results.
Kind regards,
PBL
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I agree with PBL. I made the mistake of having a retroperitoneal biopsy. It was awful. Take your time. Be cautious and be your own boss. A PET is a screening test, not a diagnostic tool so a biopsy may eventually be needed. If it is lymphoma it may advance to where a more accessible node becomes enlarged. Good luck! I hope it is not cancer but if it is lymphoma is about as easy as cancer gets. It is very treatable and treatments are improving rapidly.
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Hi everybody, I wanted to give an update now that my PET scan results are back.
It's still a waiting game to see my oncologist - I will be seeing him (or his partner, not sure who) on Monday. I called the office today to find out what kind of an appointment it was going to be, and I was told that it was going to be a really fast meeting where we would go over results and schedule me for surgery to remove my other ovary and possibly have a full hysterectomy (which is how this whole thing started.)
So from what I have read on the PET scan, absolutely nothing has changed. The lymph node that lit up has not grown or shrunk. There are no other lymph nodes that have lit up, and my spleen is still slightly enlarged. Here are a few things copied and pasted I thought were really interesting. (When my mom went thru breast cancer treatment, I read all of her medical reports, I found them really interesting, so I do the same on my own.)
- "Grossly stable paracaval lymph node which demonstrates hypermetabolic activity. Differential includes metastasis, lymphoproliferative lymph node, or reactive lymph node. Recommend tissue sampling for further evaluation." (Sounds like they have no idea what it is and a biopsy will be what gives the answer?)
- Increased metabolic cavity of the right parapharyngeal region and right lateral laryngeal wall. Recommend correlation with endoscopy. (I had a very bad case of covid in March that developed into long Covid and a cough that is still hanging on - I'm thinking this is related to that?)
- The bone marrow uptake is mildly increased/reactive in nature.
But so far, this is all looking kind of good? Nothing has changed in over a year, and I am still not showing any symptoms. No weight loss, no night sweats, no fevers. The only pain I've had has been pelvic pain from the large ovarian cyst I have.
Thank you all for letting me share. I hope everyone is doing well.
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Hello ReginaMarie,
Based on what you shared, things appear to be stable.
As previously stated, a definitive diagnosis can only be obtained through a biopsy, which is apparently what the oncologist may propose to do. The issue is that removing your remaining ovary will cause menopause at quite a young age, which means more than just losing the ability to conceive children, and may indeed significantly impact your health, so you may want to consider this carefully and weigh the pros and cons against more conservative options with the doctor. It might also be a good idea to seek a second opinion at a reputable facility before going ahead...
Unless your doctor has good reasons to believe that your ovary is indeed cancerous (you do not say if the PET report mentions any uptake in the ovary, nor if there was a pathology report on the first ovary), and in the absence of any significant change at this point, it might be preferable to keep monitoring if there is no conveniently accessible lymph node.
I hope this helps. Do let us know how the appointment goes.
PBL
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Small update.
Biopsy tomorrow!
I had my pre-op bloodwork done and my WBC came back at 11.9, with the normal range being listed as no more than 11, which kind of scared me a bit. From what I can tell, it is borderline high, and I did just get over a massive sinus infection and I understand our WBCs can rise a bit when dealing with those.
Oh well. Fingers crossed. Either way, I will know by the end of the week what is going on.
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Dear Regina,
thank yo for your update. Your WBC isn’t alarmingly high and you tell that you had an infection. In any case combined with only one enlarged lymph node it doesn’t sound bad, but uncertainty is a huge source of anxiety, too.
I wish you good luck for your biopsy!
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Hello everyone!
Biopsy results are back and they are NEGATIVE!
(C/P from my pathology report.)
FINAL DIAGNOSIS:
Lymph node, paracaval, needle core biopsy:
- Benign lymph node
- NO malignancy seen
COMMENT:The findings are non-specific and do NOT suggest any particular infectious or inflammatory etiology. Cultures of this node can be expected to be negative for pathogens.
I was so torn between how I felt, if my spleen hadn't been involved, I would have been totally chill and expecting this result, but dang, this is such a relief either way.
I see my doctor on 10/2 to go over the results and I still have a ton of questions for him, like why my WBC was up a little bit and why my spleen was involved. But having this result is such a weight off of my shoulders.
Thank you all so much for the support. Thank you!
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Hello everyone.
Small update. So apparently, this is not over yet.
I went to see my gyno oncologist today and he is referring me to a lymphoma specialist. When I asked why, he said that he didn't like that my last two scans showed that lymph node as being positive while the biopsy came back negative. When I asked why my biopsy was negative then, he explained that there is a possiblity that the biopsy was a false negative.
He told me he expected what was going on to be a benign condition since the lymph node had not changed in the last year and of course the biopsy was negative, but he wanted a second opinion to be sure, which I completely understand. But still, not the news I wanted to hear when I walked in there.
Anyways, thanks for letting me share. I hope everyone is doing well.
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Hi all,
Finally got in to see a hematologist on November 21st. She is the assistant head of the lymphoma department at Strong Memorial, so I am seeing the best. What should I expect from the first consultation?
Thanks. Hope everyone is well.
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