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New to forum; awaiting information and have upcoming medical appointment. Need advice on questions to ask based on symptoms

Melt
Posts: 31
Joined: Jan 2021

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

Melt
Posts: 31
Joined: Jan 2021

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. 

Max Former Hodg...
Posts: 3699
Joined: May 2012

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.

Melt
Posts: 31
Joined: Jan 2021

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? 

ShadyGuy
Posts: 709
Joined: Jan 2017

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.

Melt
Posts: 31
Joined: Jan 2021

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. 

PBL
Posts: 329
Joined: Jul 2016

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,
PBL

 

 

Melt
Posts: 31
Joined: Jan 2021

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. 

Melt
Posts: 31
Joined: Jan 2021

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. 

PBL
Posts: 329
Joined: Jul 2016

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

Melt
Posts: 31
Joined: Jan 2021

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? 

ShadyGuy
Posts: 709
Joined: Jan 2017

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.

Max Former Hodg...
Posts: 3699
Joined: May 2012

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.

PBL
Posts: 329
Joined: Jul 2016

... 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. Smile

Have a great weekend.
PBL

Melt
Posts: 31
Joined: Jan 2021

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. 

Burni's picture
Burni
Posts: 15
Joined: Aug 2020

.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.

Melt
Posts: 31
Joined: Jan 2021

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. 

po18guy's picture
po18guy
Posts: 1222
Joined: Nov 2011

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! 

Melt
Posts: 31
Joined: Jan 2021

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. 

PBL
Posts: 329
Joined: Jul 2016

... 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

 

 

Melt
Posts: 31
Joined: Jan 2021

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. 

ShadyGuy
Posts: 709
Joined: Jan 2017

about worrying! There is nothing inherently wrong about stress. Without some amount of stress (enthusiasm is a form of stress) most of us would not move out of our tracks. How one deals with stress - or should I say how one responds to stress - is what matters. I know a guy who lays around his Mom's house for free, plays video games all night while smoking weed and drinking, then sleeps till noon. His life is pretty much stress free. Is that a good thing? No! Fear is also a form of stress. Courage is overcoming fear. Those who are "fearless" can never really be courageous.

PBL
Posts: 329
Joined: Jul 2016

...in this instance is to let your doctor know what happened. She may be able to move things forward by informing your insurance of her reason for prescribing that CT. But try not to break down over those little annoyances, as there will likely be many more.

Here is another personal anecdote: when I finally had my GP's referral letter for a rhumatologist in mid-September 2015 and called the teaching hospital to make an appointment, I was initially given January 20th... I expressed my surprise at the long wait, and was told, "well, why don't you send us your medical file and we'll see". So, I did, and lo and behold, my appointment immediately got moved up to October 9th. And this was with a radiologist's report that left little doubt as to the nature of her findings after performing two MRIs and 2 whole-body CTs plus a bone scan...

Just trying to convince you that there is no need to rush into anything. Be calm and determined, and you'll get to the bottom of this. In the meantime, breathing exercises several times during the day should help you through this.

PBL

 

Melt
Posts: 31
Joined: Jan 2021

Boy, you've been through the ringer! I'm sorry to hear about the struggles you've had. Definitely seems as if your good humor is intact, which is lovely. 
I suppose going through all this must necessarily either drive a person bonkers or teach an almost zen-like patience. 

I think i probably ought to feel lucky. I'm having some hiccups with insurance at the moment, but I also haven't had it long, never used it for anything like this volume of tests, and I'm young enough (35) that they just may need some kind of push from my doctors to accept that i need the scans. I don't know, but it seems like she's handling it. 

No update on the rescheduled scan yet, but my doctor did message me first thing this morning wanting to schedule another in office evaluation of the new lump. We'll see. 

I go back and forth on being able to manage my anxiety about it all, but I'm trying. I really don't have any energy, so I've been setting my daughter up for a lot of crafts and painting and just stay near her and encourage her. I've tried to distract myself with art too, but man being in this headspace is making everything take a weird dark turn! 

Max Former Hodg...
Posts: 3699
Joined: May 2012

Melt, everyone here has been through the ringer; it is the nature of the lymphoma experience.  My Gma out on the wheat farm in Kansas in the 60s still had an outside two tub setup: one side was to hand wash, the other side had a ringer mounted on it, and clothes were sent through, to squeeze all of the water out of them, to then hang on the line.

Cancer treatment is the ringer: is squeezes out all of the bad, to lead to a new freshness in the warm breeze.   Think of the coming breeze, not the current ringer.

 

.

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

Max, what a beautiful thing to say!

Might it have something to do with the joy of, and protectiveness for, the baby I see in the photo?

Blessings,

Rocquie

 

 

Max Former Hodg...
Posts: 3699
Joined: May 2012

Ty is now 13 months old, and can run.   The world will have its hands full soon !

PBL
Posts: 329
Joined: Jul 2016

A much-needed cause for jubilation!

Max Former Hodg...
Posts: 3699
Joined: May 2012

.

GGc0ok
Posts: 44
Joined: Oct 2020

Max I hadn't read this until today. I like this analogy.  I'll think of the coming breeze as well. Not the ringer. 
GG

Burni's picture
Burni
Posts: 15
Joined: Aug 2020

sorry it took so long to get back to you.I went back to work and I feel I have no time for anything.Idid not have any night sweats or fatigue.No weight loss until the 10 days before I started chemo.So you see how very different everyone is.I had a bump growing right on my forehead.Thought it was a bug bite.It grew for 12 weeks(parted my hair different to cover it up) before I had my physical and my doctor asked how are you doing.Ihad started having abdominal swelling(I thought it was because I was now layed off from work and not getting excersise and getting thick around the waist)Menapause was also somthing i Questioned with the puffy gut,i did not feel right!My doctor ordered utrasounds and then MRI and then CAT scans.Ultrasounds read:ovarian cyst and I thought OK thats it, but each scan I got revealed more and more until they said Lymphoma. I had a biopsy andI didn't find out for two more weeks(sitting in the oncology office) what kind of Lymphoma.Diffused Large B-Cell stage 4 (thebump was caused by Lymphoma jumping the tracks) I found this sight at that point,and still in shock with my own diagnosis, I started reading about everyones journeys.I hope you find the answers about whats going on with you quickly.

Melt
Posts: 31
Joined: Jan 2021

I'm sorry Burni! It seems I overlooked your message earlier. It definitely is interesting how differently every individual person seems to react to both illnesses and medication. Goes to show that maybe things can never be predicted 100%, even with rigorous study. 

I definitely have a weird seemingly random bloating that's getting worse, while I'm simultaneously still losing weight. Who can say?

PBL
Posts: 329
Joined: Jul 2016

... keep trying. You're already getting better at coping with it all - in effect, becoming a patient.

As Max has perfectly summed it up, we've all been through the ringer, and some among us truly are world-class champions!

PBL

 

Melt
Posts: 31
Joined: Jan 2021

Moving forward now, I guess. Saw her today and she ordered more blood work and scheduled me for a chest X-ray and ultrasound on supraclavicular lymph nodes that popped up over the past weekend. I'd actually been hoping/ almost certain that the new nodes were in my head! I suppose not.

 She still wants the CT most of all, but they're experiencing delays with insurance. She says insurance won't balk at the smaller tests. I'll be getting the Xray tomorrow, and waiting on the new US to be scheduled by the office. 

I've been meaning to ask, after we get through the many imaging tests, do we at least get superpowers? maybe not Spider-Man level radioactivity, but something would be nice! 

PBL
Posts: 329
Joined: Jul 2016

Not even faintly glowing in the dark, I'm afraid... 

See how things do seem to get done without any need for huffing and puffing? That's the superpower you acquire as time goes by and tests accumulate!

Melt
Posts: 31
Joined: Jan 2021

Still no real update, but I figured I'd keep you guys in the loop, since you have all been quite supportive and friendly. 
I'm having a lot of tests this upcoming Tuesday; the originally planned left axillary ultrasound and mammogram, and then a head/neck ultrasound due to more left side cervical nodes popping up/getting bigger, and a (very small) newly raised "chain" (doctor's phrase) above my left clavicle. 

she tested me again for covid just in case (i had tested at the beginning of the week) due to achiness developing in hips and left shoulder, but that was again negative. 

There has been some sort of general mild aching in my left shoulder area down to my breast for a little while, but now I'm getting these twinges up through the left side of my neck, almost exactly like a pulling sensation. It's really weird.

I'm hesitant to even tell my doctor about it, though, because I feel like after a certain  point I'm just going to seem crazy! Some of this has got to be aging combined with stress and lack of steady health care for almost the entirety of my adult life.

 

As a side note, did any of you experience any anxiety around going the the diagnosis process? Not fear of something serious, but in my case I am just consumed by the idea I'm stressing out my family, worrying people, and that I'm being stupid or silly for agreeing to all these follow up tests. My partner is USUALLY not a comple *******, but he told me yesterday that all the testing was stupid as bloodwork didn't find anything initally. Apparently he's really frustrated. 

So now I feel like i am in a lose lose situation. If something IS going on obviously that's not ideal, and I've every single thing comes back inconclusive, then... he's validated.

 

Yeah, I don't know. Just feeling like a crazy person these days I guess.

 

 

 

PBL
Posts: 329
Joined: Jul 2016

Hi,

I'd say everyone facing uncertainty is under a certain amount of stress. The higher the stakes, the higher the stress level. Everyone reacts or copes differently though. Fear, helplessness, denial, ... you name it, they're all part of the equation. As I see it, the best way to deal with the diagnostic period is to keep quiet about it. Having to deal with your partner's - your parents' - your children's - your colleagues' reactions and coping mechanisms on top of riding your own rollercoaster really makes it harder. As you are beginning to see for yourself, when you inflict stress upon them, they may react with denial and/or resent you for not sparing them that uncertainty.

That is why it is in your best interest on many levels to find ways to manage your own stress and apply them without fail. No point in beating yourself up with guilt either - just look for the means to keep calm and go about your usual life.

I understand that this is easier said than done, but the good news is that there are forums such as you've found here where you can find people who are not as emotionally involved in your life and who have been through what you are experiencing.

This cannot be the answer you are seeking, but there is no such thing as a magic wand...

Hang in there, and don't forget that at this point you do not know what results those investigations will yield - it may well be a completely benign diagnosis.

Regarding sharing information with your doctor though, I would encourage you to be quite open about whatever new symptoms arise - and, of course, your state of anxiety as well. Let her sort out what is of interest in her assessment of your situation, and offer help where she can.

PBL

Melt
Posts: 31
Joined: Jan 2021

all good points. I have been pretty mum about all the details going on with tests and all that, but all the same it's been hard to hide that I've felt like crap. That just must be frustrating for others who care about me, I guess. I am keeping busy; trying to catch up on stuff around the house and get some items out for our big trash dump-- I'm going quite slowly mostly because of the aching. Which is definitely more an odd nuisance feeling of discomfort than anything huge or agonizing. Just new. 
I gave myself some very annoyong perspective today when I had to take a break in the middle of some mundane chores-- in early October I wasn't feeling tip top but I was so much more myself. I had carried an entire loveseat down two flights of stairs by myself and felt Very pleased With myself to get things done. Now I can't move the damn boxes out with lightweight junk. Ugh. 

and Your answer is not at all counter to what I was looking for! I was more just interested in hearing about other's experiences with family and waiting for diagnosis. Thank you for giving me additional perspective. 

I might message my doctor. I'm still hesitant for her to start thinking I'm just overly anxious about everything. Plus I'm not sure realistically what she could do or say since we're still just waiting for scans. 

Melt
Posts: 31
Joined: Jan 2021

Still waiting for scans. Ultrasounds on multiple nodes Tuesday and no word on the CT scan yet. It would make sense to me that at this point insurance may be waiting for the results of the ultrasounds to OK the CT? Maybe? Not sure. At this point I'm over the anxiety. I feel guilty worrying when I should be focused on other things. Probably I'm fine and my body is just going haywire with age. 
Everything is just too weird. Most of my most pronounced lymph nodes are in various places on the left side of my body, but yesterday a new fairly large hard lump popped up in my RIGHT breast. It wasn't there before, but no nodes that I can feel beneath my right armpit. There's been mild involvement with right cervical lymph nodes this whole time, but not as many or as large as on the left. 

I don't know anymore. I can't sustain the level of anxiety I had been feeling, and I just don't even want to worry about it anymore. I have not started my menstrual cycle yet, it's probably a week and a half late, no chance of being pregnant. It's possible that is because I'm down to 99lbs but I don't know.  I feel extremely off and I'm just over it. 

I had actually messaged my doctor about the twinging pain on the left side where the nodes are most tightly clustered, and she seemed abrupt and just told me the US was the next step and not to go to the ER if there were any big changes. Obviously I do not want to bother her with this new lump. 

Im tired of feeling crazy. 

PBL
Posts: 329
Joined: Jul 2016

Your doctor, I believe, is trying to convey that the answers you seek will be coming soon. And in the meantime, you need to stay put. If these investigations yield a cancer diagnosis, the last thing you need is to go to the ER and get CoViD-19, which would only delay treatment.

Just try and remain rational for a little more, ok?

 

Pwhitefl21
Posts: 15
Joined: Jan 2021

I totally agree with PBL. I know it can be stressfull, but wait for the process to complete and you get the full results. At that time, knowing all the relevant information, you can determine the next steps.

 

I am going through a similar process, and PBL's advice was very helpful is talking me through it.

Melt
Posts: 31
Joined: Jan 2021

Thanks guys, 

Definitely trying to sit tight over here and not be ridiculous. I'm a little bit anxious because I haven't gotten results from tests yet, and they were mostly pretty early in the day yesterday. But then again, it WAS just yesterday and we are having something of a weather event right now, so I'm thinking things may have just shut down early today. 

I am actually feeling somewhat positive so far today; yesterday was awful from start to finish due to various reasons, including and culminating with the fact that we got into a car wreck right as we were leaving my last test of the day. We are all fine, but our car is totaled! What fun! Perversely, I feel like that has maybe gotten some of the bad "juju" out of the way and things might go well with all the scans. 

PBL
Posts: 329
Joined: Jul 2016

Thanks for your update. Glad the car wreck brought no harm beyond the material aspect of it!!

Keep hanging in there, and do let us know what the results are - whatever they turn out to be.

PBL

Melt
Posts: 31
Joined: Jan 2021

Since everyone here has been so kind, I thought I'd let you know what I've got so far in the way of updates:

I think it's mostly good news!

Ultrasound results from both the breast/axillary lymph node exam and neck exam have been uploaded to my patient portal.

The left axillary lump that has been present for a couple of years was deemed to have not increased appreciably in size and to appear benign, with no alarming characteristics noted on that breast. They had gone ahead and also looked at a hard spot on my right breast that had developed shortly before the ultrasound was performed, and couldn't really find anything on the US and concluded that it was a gland that can swell and sometimes cause pain during the menstrual cycle that I was more aware of now because of all the weight loss. 

 

The neck results are a little more confusing, but I think largely good. The report noted bilateral lymph swelling with benign characteristics. I'm happy with this, although moderately confused, because while I do have one very slightly enlarged node on the right, I have several of varying sizes on the left. The one bigger lump on the left doesn't seem to be mentioned at all in the US report and I'm wondering about that a little bit, but I guess I'll ask my doctor when I see her.

The CT report has not uploaded to my portal yet, but I did (of course) miss a call from the doctor's office this morning. When I called back, I was told that my doctor was out of town this week and had requested an appointment be scheduled next week to go over my results. They didn't have more to say, but I'm guessing that given her attentiveness so far, she'd probably let me know if there was something concerning about the CT results? 

I will see her Thursday morning when she is back in town. I believe I won't really be receiving any answers about the symptoms I've been having, but all the same it is good if they haven't found anything serious with all the tests they've done. 

 

Does anyone have any further advice? Should I feel pretty good about this so far? Even though I have so many neck lymph nodes popping up and no sign of infection, I can't imagine the US missing something serious.

 

ShadyGuy
Posts: 709
Joined: Jan 2017

was the CT performed with contrast?

Melt
Posts: 31
Joined: Jan 2021

It was performed with contrast, as I understand it because I'm currently underweight. Still haven't gotten those results, but I feel better about things. 

PBL
Posts: 329
Joined: Jul 2016

... I believe you may start feeling better about this whole episode.

Ultrasound imaging shows organ structure - including that of lymph nodes. Cancer causes loss of internal organ structure. The fact that your ultrasound exams do not seem to demonstrate any abnormality in that respect is credible cause for a huge sigh of relief.

As previously suggested, lymphoma is not the only explanation for popping nodes. Conversely, you do not necessarily need any suspicious nodes to have lymphoma - in my experience anyhow.

When you see your doctor next Thursday, depending on what she suggests in terms of diagnosis you may want to ask her if this is worth a referral to a hematologist for your peace of mind and specialist assessment.

In the meantime, start getting some sleep and try and see if some of your most bothersome or worrysome symptoms start easing up. The mind can really play tricks on the body.

Do keep us updated as your experience contributes to enlightening other newcomers!

PBL

Melt
Posts: 31
Joined: Jan 2021

Boy, can it! I think once I actually do speak to her, I'll feel a lot better. I'm already feeling reassured, but unfortunately these symptoms were all going on a lot longer than the recent doctor/testing experience. What set this all off was me having had severe abdominal cramps and exhaustion for about a year, with the exhaustion getting progressively worse and eventually coinciding with fairly abrupt weight loss while eating more than usual (holidays). Eventually my appetite waned as well, and I feel full quickly, but that has been more recent a quite possibly stress. When I first saw the doctor about these symptoms, that was when she did a full exam and discovered enlarged lymphs, a couple of which I'd been aware of for a long while, and others I hadn't noticed until recently. 

 

That said, I really do think it's likely stress and worry during this testing process has made things a million times worse and also made me hyper aware of ever little weirdness my body might throw my way!

 

PBL
Posts: 329
Joined: Jul 2016

... try and see if feeling more relaxed makes any difference on your sleep, appetite, digestion, etc.

And don't forget to enjoy the weekend!

Do keep us updated on your next appointment. 

PBL

Melt
Posts: 31
Joined: Jan 2021

Will do, thank you! 
I have gotten a lot of weird paintings out of all this anxiety recently, but I am more than ready to leave it behind! 
thank you for all your kind advice-- I realize it must be a little taxing to deal with all the anxiety surrounding people who have not yet had life changing diagnoses, when you yourself have experienced first hand the challenges of actually dealing with a cancer diagnosis. 
best of luck, everyone!

Melt
Posts: 31
Joined: Jan 2021

Hi guys, I posted in a new thread but was encouraged to update the old one too/instead  

 

I just had my results appointment with my doctor today and thought I'd let you all know how it went. 

All is seemingly good, barring some anatomically strange elements which evidently shouldn’t be causing problems. 
She thinks my big groin nodes might have been caused by my at the time kitten scratching me a couple of months ago on the thigh! Said CT indicated for now they’re structurally normal, but slightly enlarged nodes. 
Said we needed to watch the biggest neck lump now, because it’s clinically too small to biopsy, but it may be warranted later.

Time will tell, she says, so we're checking it again in a few months and I'm to call her if it goes nuts. Said the weird nerve sensations which are driving me crazy are because of where it is located  

She’s testing me now for EBV, Lyme, cat scratch and another CBC panel to double check, and because I've started bruising badly and painfully and I've got a dry intermittent cough (although lungs sound good), but I'm not anemic at all per the bloodwork from about three weeks ago.

Otherwise we'll rescan the neck in a couple months. 

I have some sort of stomach inflammation that may be causing the lack of appetite and weight loss. Perversely, I have to not eat for 24 to 48 hours once a month with only liquid foods in order to see if the inflammation comes down and we'll go from there. She also said something about a test for celiac, but I'm not sure if that's being looked into with this round of bloodwork or not. I've had a pretty gluten heavy diet my whole life, so I'm not sure about it, although it seems like there is some overlap between celiac symptoms and what I've experienced more recently. Both my toddler daughter and I have a recurring usually non itchy "chicken skin" rash, though, so she thought that may possibly be related. 

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