New to forum; awaiting information and have upcoming medical appointment. Need advice on questions t
Hi everyone. I’m new here, and I’m hoping some of you might be able to help me a bit.
I want to say first that while I’m dealing with some ongoing health stuff which is concerning me, I’m trying hard not to delve into google too much as I know that can be overly worrying and counter productive. I’m actually here now and found this forum due to some concerns a family member in the medical profession voiced recently regarding my symptoms over the last year.
**I am sorry in advance for the crazy wall of text.
Getting into it,
I have swollen lymph nodes apparently throughout my system— some are clearly enlarged, and some are just hard and very palpable without necessarily seeming overly large. Most are immovable and none are tender.
Two lymph nodes have been enlarged for years. I had noticed a sizable and very hard, immovable lump beneath my jaw in approximately 2014 and went to see an ENT. He performed just a physical exam, looked into my nasal cavity and took a history. What he told me was that he wasn’t concerned, that it was likely a node that had reacted in the weeks or months previous to a minor infection and sometimes they took awhile to go down, but that it would. He didn’t recommend any follow up, so I didn’t worry about it
Life got busy, I started a family and I forgot about it.
In 2018 I noticed during a routine self exam a lump beneath my left arm, adjacent to my breast. I didn’t have proper insurance, so I went for an exam at a local health clinic. They sent me for a series of mammograms, and determined it was an active node, but nothing to worry about and it would go away.
Again, life got in the way, and although neither lump went away, I didn’t worry.
Fast forward to the end of 2019. I start having awful, awful abdominal cramps general concentrated on my left side, but radiating through my lower abdomen.
It’s intermittent, lasts about a week or more each time, and the pain will sometimes wake me from a dead sleep or make it hard to walk. But it does go away and come back, seemingly with no pattern. I also begin experiencing a weird full body exhaustion which comes and goes.
In August last year (2020), I ended up having an enormous bartholin cyst crop up out of nowhere and ended up going to a university gyno clinic. They helped me get on insurance and I had several exams there during the treatment of the bartholin cyst which led them to ultrasound my reproductive organs and discover I have a huge simple cyst on my left ovary. They told me that was likely the culprit of the pain, and since it was a simple cyst they’d watch and wait to be sure it didn’t increase to a problematic point. I also had several prominent hard nodes in my pelvic area, which the doctors did not seem concerned about.
Now I’ve begun experiencing the exhaustion or fatigue again and it is suddenly hugely debilitating. Doesn’t seem to matter how much sleep I get. I always felt healthy, I’m fit... it doesn’t seem to matter. I can barely do anything, and I hate it. I feel Terrible for my daughter that I’m a shadow of myself right now.
I did a self check one night recently and all of the previously noticed nodes are still hard and still prominent. The ones on my groin feel odd, there’s a bigger lump to the left but throughout the front of my pelvis there is a cluster of small hard lumps which feel knotty. The large hard node beneath my jaw from years ago is still there. The left underarm is still there. I have new enlarged hard lumps bilaterally on my neck.
A few months ago I started having a ton of trouble sleeping, and went through maybe two weeks of night sweats, which I’d never had.
I have not experienced that recently, however.
So, I’m really not experiencing too many steady symptoms except for this exhaustion and the lymph involvement.
It does have me a bit concerned, so I called around and the only office I could find taking new patients right now just has a Nurse Practitioner receiving new patients. I have an appointment Thursday this week, but I’d like to know what questions to ask. Maybe this is nothing, but it’s been going on so long I really need some answers.
I’m sorry for such a huge wall of text.
Thank you
Comments
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I forgot I should maybe also
I forgot I should maybe also note that I've lost weight recently without trying or changing anything. Roughly 10lbs, which isn't that much, although I only weighed a little over 112lbs to begin with. I am 35, female, 5'3" in height and always on the smaller side. Since I had my child in 2017, my weight has largely remained the same at 112ish lbs. I started to lose since August and am now 101lbs exactly. I am still eatihg and I'm not considerably more stressed than usual or doing anything differently. In the last maybe two weeks my appetite has gone to almost nothing, but I can eat when I make myself, just not much.
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Aggregate
I would say you definitely need to be checked out thoroughly, Melt. It is quite possible that you are dealing with a variety of unrelated issues, but the night sweats, fatigue, and weight loss are causes for due diligence. Ten pounds of weight loss in a 110 pound individual IS significant, if diet or routine have not changed. Few things cause night sweats except lymphoma and menopause, but it seems possible that the ovarian cyst could have mimicked menopause and partially caused the sweats.
You do not mention comprehensive blood panels. This is the least expensive way to investigate possible blood cancers. A CBC and Metabolic Panel are where most family doctors begin in looking for possible explanations. Be aware that most non-oncologist doctors know little about cancer, so ask if they think a referral to a medical oncologist is warrented.
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Thank you for your reply. IAggregate
I would say you definitely need to be checked out thoroughly, Melt. It is quite possible that you are dealing with a variety of unrelated issues, but the night sweats, fatigue, and weight loss are causes for due diligence. Ten pounds of weight loss in a 110 pound individual IS significant, if diet or routine have not changed. Few things cause night sweats except lymphoma and menopause, but it seems possible that the ovarian cyst could have mimicked menopause and partially caused the sweats.
You do not mention comprehensive blood panels. This is the least expensive way to investigate possible blood cancers. A CBC and Metabolic Panel are where most family doctors begin in looking for possible explanations. Be aware that most non-oncologist doctors know little about cancer, so ask if they think a referral to a medical oncologist is warrented.
Thank you for your reply. I think what you say makes good sense. I will do my best to ask as many questions as possible tomorrow with NP. Do you think it's possible for night sweats to occur a few times then go away (so far) with a blood cancer?
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Prudent approach
Hi,
Sorry you are feeling unwell.
I agree with Max that a 10-lb unintended weight loss in a 110-lb young woman is worth mentioning to a medical professional.
However, I would note that it has occured fairly slowly - over the course of five to six months, if I read you correctly. Such weight loss does not necessarily scream "cancer". It could very likely be linked to your state of worry over your health.
Being the mother of a young child is a frequent trigger for some anxiety, and the current ongoing uncertainty will likely have reinforced that anxiety. Motherhood can also explain much of the "fatigue" you have felt in the past couple of years - and worrying can certainly increase that feeling of tiredness.
You mention "night sweats" a few months ago - which would have been in the warmer time of year (unless of course you are in the southern hemisphere). As mentioned by Max, hormonal imbalance (of ovarian origin, or thyroid, or surrenal...) can cause you to sweat at night. So can, among other things, warmer temperatures, excessive heating in your bedroom, thick covers, a soft mattress, and anxiety.
As regards lymph nodes, they are more easily detectable in someone without much fat underneath their skin, and poking and prodding them (out of anxiety, for instance) will keep them irritated.
The fact that this set of "symptoms" has been pretty much stable over the past five or six years would tend to indicate that if it were lymphoma at all, it would necessarily be an indolent type, which is not the most likely occurence in someone your age.
Finally, the fact that previous medical examinations have not seemed to get the doctors who have examined you concerned might also plead in favor of a non-cancerous diagnosis.
So, I would suggest keeping calm about this as you go into your appointment tomorrow; giving the nurse your complete history just as you have in your post (you may want to hand her a printout, as even medical professionals cannot take in every bit of information you give them orally, while reading your history may help them get the whole picture and pass it on to their colleagues); and stating that you are seeking answers because of the duration of this set of bothersome symptoms. Keep in mind that there are other possible, non-cancerous explanations to your current set of symptoms, and simply insist on having them investigated with an aim to achieving a credible diagnosis and resolution.
Do let us know how things go.
Kind regards,
PBL0 -
Night SweatsMelt said:Thank you for your reply. I
Thank you for your reply. I think what you say makes good sense. I will do my best to ask as many questions as possible tomorrow with NP. Do you think it's possible for night sweats to occur a few times then go away (so far) with a blood cancer?
In a person who has lymphoma, night sweats and weight loss are among a group of symptoms often referred to as "B Symptoms". To have both occur at the same time definitely justifies being looked into. Having had both these symptoms I can say that sweating from overheating, too much cover on the bed, exertion etc. is not the the same as drenching night sweats. I got really wet and had to change clothes and the sheets. For me it occurred maybe 4-5 times in a month. I was 6'4" and weighed roughly 200 lbs. I dropped to 174 in less than a month while eating like a horse. Your symptoms do not sound that extreme. Work with your doctors and ask about seeing an oncologist if symptoms persist. I think you are on the right track. Take care and stay with us.
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Thank you PBL, for thoughtful
Thank you PBL, for thoughtful and reasonable advice. I know you're correct-- could be a lot of things. I certainly need to present a clear picture of what is going on and get a proper diagnosis regardless. Printing out my original post is probably a good idea.
I have two family members out of town, one a hospitalist and one an osteopath and both said I needed bloodwork and a CT scan, so perhaps I let that frighten me overmuch.The night sweats were actually in October, and it was chilly here, but not incredibly cold. It could definitely be caused I'd think by the sizable ovarian cyst.
The weight loss started to occur over the holidays, maybe November until now. I don't discount stress though. I don't FEEL more stressed, but I recognize that I might just not be dealing as well as I thought I had been. Fatigue from child rearing is real! This feels different, but maybe I'm anemic.
regardless, I'll keep you all updated! Thank you.
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Thank you for your reply! MyShadyGuy said:Night Sweats
In a person who has lymphoma, night sweats and weight loss are among a group of symptoms often referred to as "B Symptoms". To have both occur at the same time definitely justifies being looked into. Having had both these symptoms I can say that sweating from overheating, too much cover on the bed, exertion etc. is not the the same as drenching night sweats. I got really wet and had to change clothes and the sheets. For me it occurred maybe 4-5 times in a month. I was 6'4" and weighed roughly 200 lbs. I dropped to 174 in less than a month while eating like a horse. Your symptoms do not sound that extreme. Work with your doctors and ask about seeing an oncologist if symptoms persist. I think you are on the right track. Take care and stay with us.
Thank you for your reply! My weight loss definitely does not sound as severe as yours. That is encouraging!
The night sweats also weren't as extreme-- it was definitely a lot of sweat, It Was enough to change clothes immediately, but I didn't change my bedsheets. Partly because I still occasionally co-sleep with my toddler (definitely set myself up for failure by continuing To do that too long when she was a baby!) and I didn't want to wake her up, but it doesn't sound as bad. It happened every few nights for a couple of weeks during October and November I think.All of you are very kind to take the time to reply to me. Hopefully I'll get started on some answers today when I see my new doctor. I'm encouraged that it may be something very addressable.
I hope You and everyone else is doing well now with your treatment.
i will let you all know how it goes.0 -
I saw the doctor today and
I saw the doctor today and since I have no concrete new information, I thought I'd update my original post. I liked the doctor and feel she was compassionate and likely to be thorough. She's not as worried about the lymph nodes in my neck and chin all that much. Said they're hard and she feels them, but the long term hardened node beneath my chin she tentatively identified as "shotty." She's more concerned with a huge battery of blood tests, which she made a start on today, and more concerned about the groin and underarm nodes. She's ordering a mammogram, ultrasound, and torso/abdominal CT scan hopefully to be scheduled next week.
No real idea what's up yet, but since it's been awhile since I've had a comprehensive work up or check up, she's systematically going through a variety of diagnostics.
I feel pretty good about it so far, although a bit anxious and mildly surprised by how concerned she was about the small palpable node by my breast.
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Overall good news
Congratulations on finding a doctor who will methodically and thoroughly investigate your complaint in search of answers! Now all you need to do is be patient and keep working with her.
Hopefully this will turn out to be benign and fixable... Do update us on your progress.
PBL
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Test results... more confusionPBL said:Overall good news
Congratulations on finding a doctor who will methodically and thoroughly investigate your complaint in search of answers! Now all you need to do is be patient and keep working with her.
Hopefully this will turn out to be benign and fixable... Do update us on your progress.
PBL
So, I got a ton of test results today in my chart, and at the end of the day a call from my doc. Everything is normal, cbc with auto diff, metabolic panel, hepatitis variants, common diseases, everything. She said some was low and some a little higher, but all within normal ranges. She only told me that there was nothing in the blood work clearly pointing to a cause for the symptoms I'm complaining of or the ones she noted during her exam yesterday (swelled/hard nodes she felt too in groin and left underarm. Can't remember the proper term), and that she wanted to move forward with the imaging. I have an iv contrast pelvic/abdominal CT this tuesday and mammogram and US on left breast the following Tuesday. She really didn't say more.
I'm just confused on all this and trying to figure out if this is GOOD news or might point to bad news?
I realize you all aren't physicians, but does anyone have any experience with these kind of results?
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Neither good nor bad news...
... This is a doctor methodically going about trying to provide the answers you have come to her seeking.
As previously said, just be patient, comply with her recommendations, and let her investigate. No need to lose any sleep over the whole process!
So, relax, focus on your day-to-day family life, and keep telling yourself that you are in good hands and will get to the bottom of this little conundrum.
Have a great weekend.
PBL0 -
Be patientMelt said:Test results... more confusion
So, I got a ton of test results today in my chart, and at the end of the day a call from my doc. Everything is normal, cbc with auto diff, metabolic panel, hepatitis variants, common diseases, everything. She said some was low and some a little higher, but all within normal ranges. She only told me that there was nothing in the blood work clearly pointing to a cause for the symptoms I'm complaining of or the ones she noted during her exam yesterday (swelled/hard nodes she felt too in groin and left underarm. Can't remember the proper term), and that she wanted to move forward with the imaging. I have an iv contrast pelvic/abdominal CT this tuesday and mammogram and US on left breast the following Tuesday. She really didn't say more.
I'm just confused on all this and trying to figure out if this is GOOD news or might point to bad news?
I realize you all aren't physicians, but does anyone have any experience with these kind of results?
More tests should tell you what is wrong. Blood tests are not a good indicator of early stage lymphoma. Mine for example were always in the low normal range up to the time I was diagnosed.30 months afer my last chemo my blood is now normal again except that WBC is low (2.7). Wait till all the evidence is in. Its hard to not be concerned but realize you are still in the testing phase. And it is a fact that the only definitive test is a biopsy. I really have a strong sense you will be fine. Best of luck.
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Thank you for the reply. You
Thank you for the reply. You’re obviously correct, I just need to sit tight and do my best not to speculate. I think some of this anxiety, which is not at all usual for me, must be coming from the fact that while I’ve definitely had symptoms that have been getting more aggravating and pronounced with time, there is simply a pall over life in the last year or so. I must duly acknowledge that 2020 especially as well as recent years in general have felt as if bad luck is a regular companion. I think had I not started to experience symptoms and notice things in the last year, I might not be so quick to assume a negative outcome.
Previously I have probably been overly blasé about my own health concerns, and felt pretty invincible/healthy. But there’s been a lot of heartbreak recently, so I’m sure that is contributing to a sense of foreboding.
Thank you for all the support. I’ll keep you guys updated.
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melt
.Its good to get everything checked out!I had minimal side effects,but did haveDiffusued LG B-Cell Lymphoma.All finishedwith chemo now'but will be followed for 2-5 years.IM trying to learn ny new NORMAL
with chemo and will get scand in march and watched close for two-5 years years. my bloow work in the beginning was ok.
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BurniBurni said:melt
.Its good to get everything checked out!I had minimal side effects,but did haveDiffusued LG B-Cell Lymphoma.All finishedwith chemo now'but will be followed for 2-5 years.IM trying to learn ny new NORMAL
with chemo and will get scand in march and watched close for two-5 years years. my bloow work in the beginning was ok.
Burni--
Did you have any of the hallmark symptoms people talk about?
If you don't mind my asking, what lead originally to your diagnosis?After talking to other confirmed cases, I definitely question whether or not I had the severity of night sweats that seems to characterize a lymphoma diagnosis.
I do, however, have the pretty debilitating fatigue and recently a feeling of aches and chills, with a randomly fluctuating/very mildly elevated temp, but not so far anything that qualifies as an actual fever . I've tested negative for infection though, some autoimmune disorders, and even covid.
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Still not cancer...as far as we know
Night sweats. There will be zero doubt "IF" you ever have them. You are soaked. Your bed clothes are soaked. The sheets are soaked. Shower. Fresh bed clothes. Change of sheets. These are normally - normally - acompanied by spiking fevers, 38-40C.
Nodes, weight loss, fatigue can be caused even by stress/anxiety. So can weight loss, loss of appetite, and over 100 other actual symptoms - partricularly chest tightness or shortness of breath. The difficult part is separating the symptoms of stress from the symptoms of what is actually occurring. Once we suspect something sinister, the mind wanders and little good comes from that. Remember also that there are numerous viruses (HMPV, HRSV, HPIV, HRV - guess how I know!) and thousands, even millions of others in circulation right now. As well, there are about 80 auto-immune conditions that can cause all of this as your immune system is the cause of all fevers, joint and muscle pains etc. asscoaited with colds and the flu. Notice that seemingly all of the wonder drugs advertised on TV suppress the immune system - when it goes wonky, all sorts of things happen. Over-reaction by the immune system is the cause of many, if not most of Covid deaths.
Still, your symptoms in total must be addressed and at this point, doctors might go one of two ways: bottom up, seeking to identify the most common of causes, or top down to eliminate the worst of causes. Unfortunately, referrals to oncology do not help with the stress. During all of this, try try try to keep busy while not thinking of a pink rabbit.
Sure!
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CBCShadyGuy said:Be patient
More tests should tell you what is wrong. Blood tests are not a good indicator of early stage lymphoma. Mine for example were always in the low normal range up to the time I was diagnosed.30 months afer my last chemo my blood is now normal again except that WBC is low (2.7). Wait till all the evidence is in. Its hard to not be concerned but realize you are still in the testing phase. And it is a fact that the only definitive test is a biopsy. I really have a strong sense you will be fine. Best of luck.
Melt, as Shady noted, of all the tests you have planned, the blood panels are the least authoratative. It is critical to have them, and better for them to be normal rather than horrible, but normal blood panels do not disprove NHL or HL. The most authoratative and informative thing will be the CT (except for any subsequent biopsies).
I initially presented with advanced, bulky, Stage 3 HL with B symptoms, but my blood labs just before my first infusion were still mostly normal, with nothing draconian indicated.
Stay on course and be certain to have every tests that you are scheduled for.
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Need to vent now, I think.
Well, the ball was rolling on everything. I was scheduled for a CT scan early this afternoon and US and mammogram next Tuesday.
The doctor's office just now called me and we had to cancel the CT scan for now; insurance has apparently not cleared it yet. They're hoping it can be sorted and done next Tuesday with the other scans; as I understand it the CT is the one my doctor is most interested in. Not sure what the issue with insurance is, but this is poor person insurance (basically my state's pretty good version of ObamaCare) and this year they've been taken over by a new company, so maybe there are some kinks in the line that the doctor's office is not even familiar with.
Being eaten alive with anxiety! We had a socially distant visit with my father in law a few days ago (he's an ER MO with a lot of experience) and he pointed out an enlarging node right above my left clavicle. I say enlarging because I'm pretty sure it was not there before. Maybe the size of a smallish peanut, but feels bigger than a pea. Non tender.
This is on the left, and that's the same side as the axillary Lump as well as the "fibrous" breast (as described by my doctor), and the ovarian cyst/biggest groin nodes.Kind of just need to vent now. Trying hard not to stress, as my daughter is definitely picking up on it now.
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No immediate danger, so...
... no cause for anxiety. Besides, what benefit would there be to letting yourself freak out? Whatever the cause of your symptoms, worrying over them will not change anything to the course of events - it will only ruin your days and nights, and those of the people around you, starting with your child.
I strongly suggest you find a way of keeping your cool: stay busy with your usual work and leisure activities, get started on relaxation techniques (look for yoga or guided meditation on YouTube or pick an app), regulate your breathing in and out when you feel anxious... and if you really find that you can't get a grip, ask your doctor for an anxiolytic.
Your symptoms have been going on for a long time, so there is really no emergency - a week's delay in getting the CT done is of no importance whatsoever.
Just so you do not picture me as some sort of unempathetic robot, let me state here that I had a spontaneous pelvic fracture in June 2015 after years of unexplained lower back and hip pain, that the MRI ordered by my GP was two months later, that my first appointment with the rhumatologist was in October, first bone marrow biopsy in November, PET-CT in December, second and third surgical biopsies in January and February 2016, port was put in place in February, and chemotherapy started in March... I had stage IV lymphoma in all of my left pelvis, and it took eight months from the fracture to treatment time - or, six months from the MRI which showed the fracture and the extent of the tumor.
I am not saying the diagnostic process is easy to bear. The waiting from one step to the next can be really long - but that's just the way it is.
For the time being, you have asked for answers regarding symptoms that may or may not be due to cancer. Your doctor is proceeding methodically and will make sure she provides those answers. Trust in her dedication and thoroughness and keep living your life in the meantime.
I hope this helps.
PBL
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This is, as ever, helpfulPBL said:No immediate danger, so...
... no cause for anxiety. Besides, what benefit would there be to letting yourself freak out? Whatever the cause of your symptoms, worrying over them will not change anything to the course of events - it will only ruin your days and nights, and those of the people around you, starting with your child.
I strongly suggest you find a way of keeping your cool: stay busy with your usual work and leisure activities, get started on relaxation techniques (look for yoga or guided meditation on YouTube or pick an app), regulate your breathing in and out when you feel anxious... and if you really find that you can't get a grip, ask your doctor for an anxiolytic.
Your symptoms have been going on for a long time, so there is really no emergency - a week's delay in getting the CT done is of no importance whatsoever.
Just so you do not picture me as some sort of unempathetic robot, let me state here that I had a spontaneous pelvic fracture in June 2015 after years of unexplained lower back and hip pain, that the MRI ordered by my GP was two months later, that my first appointment with the rhumatologist was in October, first bone marrow biopsy in November, PET-CT in December, second and third surgical biopsies in January and February 2016, port was put in place in February, and chemotherapy started in March... I had stage IV lymphoma in all of my left pelvis, and it took eight months from the fracture to treatment time - or, six months from the MRI which showed the fracture and the extent of the tumor.
I am not saying the diagnostic process is easy to bear. The waiting from one step to the next can be really long - but that's just the way it is.
For the time being, you have asked for answers regarding symptoms that may or may not be due to cancer. Your doctor is proceeding methodically and will make sure she provides those answers. Trust in her dedication and thoroughness and keep living your life in the meantime.
I hope this helps.
PBL
This is, as ever, helpful advice. I do not reckon you are a robot, although of course on the internet anything is possible! (Joking)
you are right about everything. I need to try and relax. I'm just frazzled. My doctor herself messaged me on the chart app a moment ago asking if I'd managed to schedule the CT and now I'm just annoyed at the apparent lack of organization. First I'm told to make it myself and given the number for the scheduling office, then I'm told today not long before I'm due to be at the facility, days after I succeeded in making it, that it needs to be canceled pending insurance and that THEY schedule it, and I ought never have been instructed to do it myself, and now the doctor is pressing me on why I haven't actually made it. Baffling.
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