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anyone referred to hematologist/oncologist BEFORE your diagnosis

claire1201
Posts: 15
Joined: Mar 2014

hello all. I am just writing to ask if anyone of you saw a hematologist/oncologist before anyone gave you a diagnosis? I am being referred due to some lymph nodes in my neck not having a fatty hilum or central vascularity. Just wanted to know what to expect at the appointment next week.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Your esperience here is quite the opposite of what most people encounter at their primary care doc, Claire.  Most folks with persistent symptoms have to beg for a referral. But understand: a formal ("Official") diagnosis of "cancer" is never given, except as a result of a biopsy. Scans can make a doctor 99.9% certain of what a mass is, but only a biopsyis official, for diagnostic, insurance, or treatment purposes.

Only your doc knows why he did the referral, but regardless, I would not object

At a minimum, the oncologist will virtually certainly do a touch exam, order some blood work (most large practices have a lab in the doctor's office), possibly a simle biopsy, and maybe a CT, if he is somewhat concerned. (A biopsy or CT would require a subsequent visit at the facility doing the biopsy or CT.)

Zero liklihood he or she will cause you any pain, and he will not jump to conclusions.   A thourough going-over is better than little or none, which as I said, is what most people initially get when they have concern over enlarged nodes.

Please let us know what you learn.

 [Update:    Claire, I saw on another thread that a doc also noted an enlarged node in your pelvic area, which you did not mention here.  Definitely keep the appointment with the oncologist.]

max

claire1201
Posts: 15
Joined: Mar 2014

well first, its interesting that things are going in reverse order! I had someone on another forum tell me they were impressed my pcp sent me to the right doctor. sadly my endocrinologist said my lymph nodes were fine and she didn't even bother to touch my neck. So i'm glad he sent me to the oncologist. I think the person with pelvic nodes might be someone else, HOWEVER, I can feel the ones down in my groin. I read that those are normally palpable on healthy people, but its worth bringing up to the doctor. I thought it could have been scar tissue from the two angiograms I had 2 years ago, but there is more than one bump on each side. i have 0 other symptoms...no night sweats although I do get hot every night despite the AC being at 71 degrees every night (any lower and I have to donate a kidney to pay for electricity!), minor itching but nothing crazy, Migraines have been a little more frequent but i'm used to them. Oddly enough I haven't been sick in years, not even a cold, I've had a random low grade fever but that was only ever found during a normal physical in the military when they took vitals for my retirement physical.

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

My pcp first felt a mass in my abdomen and sent me for CT scan and ultrasound. When she got the CT scan results she then ordered a biopsy of the mass and had me get an appointment with the oncologist. (The cancer clinic at out hospital has many dr but mu pcp recommended one specifically.) So when I saw the oncologist for the first time she already had the results of the CT scan, ultrasound and biopsy. The oncologist then scheduled me for the PET scan and an appt with the hemotologist/oncologist at Rush in Chgo for a second opinion. So how many have had their oncologist send them for a seonc opinion to another oncologist at a different hospital?

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

My HEMONC (hematologist oncologist) did send me to another specalist in a different state but that is because my doctor is my close friend.

My PCP was not in favor of my biopsy.  Several doctors missed my lymphoma over a number of years.  I believe I had if for about ten years before I was diagnose.  My friend looked at me at me at a Christmas Party and told me to get it out, meaning my lymph node.  This was after I had a visit with my family doctor.  My friend at the time (now oncologist) sent me to an colleague at his group and in my first visit with him, he knew.  He ordered all the different biopsies then did the final one which determined I had cancer.

I discounted all my symptoms, my doctors did too all excet this one...

I had night sweats but thought it was menopause (47), I was tired and said who isn't? I was colder than normal but it was winter and I was always cold.  My skin did itch a bit but my skin was dry...  The things that makes me mad is I had a lump that grew over ten years, doctors looked at it repeatedly and never suggested lymphoma because they were looking for breast cancer and it wasn't.

Personally I'm glad you're going in reverse order.

Good luck.

claire1201
Posts: 15
Joined: Mar 2014

OO7,

is always being cold a normal symptom? I'm always cold but chalked it up to living in FL and HI for the last 6 years (3 each). Anything below 75 and it typically gets me a sweatshirt and blanket. At school, I'm the only one comfortable while everyone else is sweating! I usually get tired around 7-8pm and make it to about 10 before we go to bed. I used to stay up well past midnight. I don't even wake up that early, 6am most days. My job is not hard, the military was way more difficult than this new job lol. And I had an out of whack sleep cycle. Recently my lower back has been sore, I go to the gym 5 days a week and thought maybe I hurt my back deadlifting, took a break, lightened the weight, but it gets sore the longer I sit, right in the center of my lower back. Nothing crazy, doesn't interfere with my day, just nagging. None of my lumps are visible, doctor did say he felt palpable "shotty nodes" in my neck.

also got my packet from the oncology center today. Its weird only because I don't have a diagnosis yet, but they sent all the paperwork in a folder to fill out ahead of time. Gave me the name of my doctor, her nurse and the medical assistant assigned to me. So far I'm impressed with the Lynn Cancer Institute of Boca Raton, FL

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I have always been thin therefore I seem to get colder before most.  When I became symptomatic of my lymphoma,I will tell you I was very cold.  At night I had so many blankets on me, my ankles hurt. My husband on the other hand had a sheet on and was too hot because I raised the temperature in the house.  I was Freakishly cold.

I woke up exhausted, driving a car became miserable because I was so tired.  It's walking into walls tired.  I am a fiercely hard-working person so this was very difficult for me to comprehend yet I did what I always have, I dug deeper and ignored that symptom and every other one.

 I also had hot flashes and night sweats which were ridiculously hot and once they were over I became ice queen again.

 I went through life in the beginning stages of been symptomatic of lymphoma without realizing it.   I was the poster child of health and fitness and never in a million years did I think I would end up with cancer.

I hope and pray you will be fine, grateful you have a team of oncologists ready to looks at your cells!

 

I used to workout like you, five days a week etc...  I was fine but I had a two visable nodes, one in the neck another in my breast/underarm region.  PET scan revealed I had one in the groin as well.  Never felt that one until treatment.  Rituxin aggravated the hell out of the cells and it blew up and then I could see it.  Not anymore.

Best regards and good luck!

 

claire1201
Posts: 15
Joined: Mar 2014

Thanks again for the post! I'll be sure to let everyone know how the first appointment goes this week!

NANCYL1
Posts: 289
Joined: Jun 2012

Hello Claire:

I went for a routine checkup to my internist in Jan. 2012.  Blood test showed that my white cells were high.  The doctor sent me immediately to an oncologist.   I had CT Scan, PT Scan,  Bone marrow biopsy.  Diagnosis:  Lymphoma, B Cell.  Had Ritoxin infusions for two years.  Have been in remission since about the end of 2013.

I go to the oncologist every six months for checkup and blood test.

Let us know how you are doing after your appointment.

 

Nancy

 

   

claire1201
Posts: 15
Joined: Mar 2014

well my appointment was rescheduled to tomorrow at 2:45. I'll let you all know how it goes tomorrow evening!

claire1201
Posts: 15
Joined: Mar 2014

Well my first appointment was yesterday. Doc had labs drawn, 5 vials I think. He didn't even bother testing for any viral or bacterial infections since I haven't been sick in years. However, they had me wait for the CBC to come back which only took about 10 min and my WBC were elevated and my neutrophils were elevated as well. WBC wasn't too high at 12200 but neutrophils were also 9000 and the range stops at 7000. He said not to worry though, he's doing a blood smear and some other stuff with the labs they drew. Also wants my endo to order another ultrasound for a few months out just so we can do it at the same facility so they have something to compare to. That's really all the information I have at this point. He said the chances of a low grade lymphoma is rare in  someone my age, and said if it was any other lymphoma we'd probably know already. Hope you guys have a good day!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Claire,

It sounds like you were given the proverbial "We are not sure yet...." diagnosis.  Some people report that that is for them more stressful than having a definitive, confirmed diagnosis.

Very generally, lymphoma for most is very IN YOUR FACE; it let's the patient know. In that sense, what your doc said is usually correct.

Obviously you have concerned doctors following you carefully, which is as much as a patient can hope for.

Wonderful holidays to you,

 

max

claire1201
Posts: 15
Joined: Mar 2014

yes Max, it seems that proverbial answer keeps coming up. "we don't know, but don't worry" lol. I'm actually thinking its not Lymphoma of any kind, and instead if it is actually something, it could be more down the leukemia road. I researched what elevated neutrophils and wbc could be (NOT dr google, but actual medical journals) and if its not from an infection or autoimmune disease, then it could be leukemia. I'm not too worried, I'm not sick and the doctor didn't even bother to run tests for all the standard "illnesses" they screen for ie toxoplasmosis, EBV, etc. because he said I looked and sounded healthy and I haven't had so much as a cough in quite a few years. I take a lot of natural supplements, drink looose leaf tea blends, raw greens juice and eat very healthy. and by healthy I don't mean the standard response from most who think they eat healthy. i weigh my food, don't buy processed foods for the house, buy organic chicken and vegatables. When everyone in my house has been run down from illness, I'm the only one left standing lol. Anyway, could be just a fluke that my numbers are high, so we will wait and see.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Once upon a time I was the poster child for health (I still think I am).  Like you raw juice, green, organic everything, no meat for me but fish, nothing processed. Clean my house with vinegar, no dry cleaning or chemicals on my lawn etc. 

My PCP once told me I was the gold standard, where he wanted all his patients to be.  That was before I went back to the gym

He was against the biopsy, "no way" he said looking at one of the reports from a biopsy.  He was influenced by my outward health.  What's crazy, I had cancer for ten years before anyone ever knew.  I was like you, never sick.  Even after diagnosis, during treatment and with falling WBC and neutrophils; still no illness.  Nurses with needles of Neulasta chasing me, thankfully I never needed it.  Came very darn close.  I rushed both my husband and son on two different occasions to the hospital due to a horrid virus.  Doctor shook his head, pissed I bet but I was unscathed.

The "in the face moment" that Mr. Max is talking about did come. I became the harbinger to a few foreign invaders.  One being a rather ugly lymph node in my jaw.  Not pretty and my vanity saved my life.

I was freezing cold, exhausted and fed up with growing node.

I hope it's a fluke and you are and will always be, well.  Stay on top of it.  Listen to your inner voice especially when you don't want too...

 

There was a moment when I questioned my quest for health and every effort I made.  Now I'm glad I did, I don't know but I fear it could be a whole lot worse...

 

blessings

claire1201
Posts: 15
Joined: Mar 2014

It's hubby's inner voice we are primarily listening to. 2 years ago I tore a hole in my carotid artery and had a stroke. I thought I pinched a nerve. Hubby told me to go to the ER when I heard my blood pressure in my ear, he had a gut feeling something was off....and he was right. 3 days in the ICU and a stent in my neck and I'm good to go now. He said his gut feeling this time around is WORSE than when I had the stroke. So we are taking precautions. He was also diagnosed with prostate cancer at 44 2 years ago. Had next to no symptoms of that either.

 

Thank you for the well wishees, I wish you the very best as well!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Claire,

While I certainly hope and pray thay you do not have leukemia, your suspicion is at least clinically reasonable. Leukemia and lymphoma are "sister diseases," both WBC cancers.  A few forms of lymphoma, after chemo and/or radiation, rarely morph into forms of leukemia (at a rate of around 2%; Adriamycin, in both CHOP and ABVD, is weakly linked to this occuring).  Statistically, receiving both substantial chemo and radiation incresase the chances of this transformation occuring.  A few very rare NHLs are clinically regarded as a hybrid disease, part lymphoma, part leukemia, and are considered indistinguishable (e.g., CLL/SLL).

Very generally, most lymphomas are much more treatable than most leukemias, and leukemia has a higher mortality rate.  As a submarine crewman trained in Radiation Health, I know that leukemia is one of the most common cancers caused by the forms of radiation emitted by both reactors and nuclear warheads (thyroid cancer is the most common from these sources).  For this reason, health agencies near some civilian reactors keep mass dosages of thyroid drugs to administer to populations following catastropic radiation leaks.  The three-reactor plant 50 miles from my home does this form of drug stockpiling.

A major study released within the last year (I believe from Harvard) concluded that around 35% of ALL cancers occur due to RANDOM miscues in normal cell division. That is, they are caused by dumb luck.  They are not linked to genetic propensity, diet, or environmental factors.  Of course, that means than around 65% do have some linkage to diet, genetics, or environmental toxins.  And healthy diets help give even cancer patients overall better health, so it is always a good idea to eat well.  But some chain smokers still live to be 100, and some healthy-lifestyle teens still die of cancer.  It seems every time I see a news interview of a person over 100, they mention as a cause of their longevity, "Taking a few stiff drinks every day."

As to "flukes," two years after I finished chemo with NED, a follow-up blood panel showed me severely anemic. I was never anemic before (even when on chemo), and had to go on infusion (IV drip) iron.  The anemia cleared, and never returned. My oncologist tested me for many things, but could find no cause.  It remains a total mystery.  I learned then that several patients at the infusion center were not cancer patients -- they did not have cancer, and never had. They had to come monthly for the iron infusions due to anemia.  No cause of the anemia was ever determinable for them, but some had been on iron for a decade or more.

Many things medical science just does not know, but you are head-and-shoulders above many, in doing the reading and research that you described.   Hoping you are never diagnosed with lymphoma or leukemia; very possibly, you never will be --

 

max

claire1201
Posts: 15
Joined: Mar 2014

Max,

I've heard that information before with regards to thyroid cancer and the navy. a friend of mine was stationed on the Louisville in Hawaii and had thyroid cancer. I spent a lot of time on my coast guard ship sitting undereath the radar, under the sticker that says to keep moving due to radioactivity. My job as signalman required me to hang out there for hours every time we conducted a drill. I'm pretty sure I ran aloft a few times to fix the ensign as well, without telling them to stop rotating since that takes longer than it did to adjust the flag. Is any of that relevant...? I'm thinking most likely not.

 

one question though, any idea how long it takes to get the results of a blood smear and other tests? My guess is a week, so I"m holding off on calling and asking since the appointment was late in the day Tuesday.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Claire,

"Electrons is electrons," we used to say (ungrammatically) in the nuclear Navy. I was on a surface ship briefly myself, and my battlestations post was on an upper deck, near the Navagation radar -- similiar to your Coast Guard experience.  I even recall that it was an "LN 66" unit. I was concerned about it and called radiation health people in Washington, and they said that my exposure was insignificant. Similiar units are installed on private yachts, where passangers can never be very far away, so it must be a minimal risk.  I would forget about the radar. Very likely the exposure was minimal.  My mother-in-law won't use a cell phone, so as to not get "brain cancer," but every government study  has shown that a cell phone is harmless, and in fact a recent study indicted that cell phone use stimulates certain neurological activity that helps against Alzheimer's and dementia.  I have been kind to her, and not mentioned that her cordless house phone has more wattage than a cell phone !

Radars of course emit em radiation (electromagnetic), whereas warheads and reactors emit some forms of em (mostly gamma), but most of their bad radiation (especially warheads) is "particulate": neutron, Alpha (which is airborn), and some others.  Sub guys all wear dosimetry meters on their belts, and dosing is strictly restricted.  Radiation Health documents claim that the average sub sailor underway receives much less daily radiation than a person at the beach, but of course sunlight is dangerous, and the source of almost all skin cancers.  Tanning booths are one of the most unhealthy things a person can do to themself.

Blood labs vary dramatically in turnaround time.  I have my PSA tested when I arrive at the urologist's office (a blood draw), and get the results in about five minutes.  My cancer center has an in-house lab, and can give CBC panels in under an hour to the doctor.  Some specialty tests like Sedementation Rate and LDH took longer, but I do not know how long nowadays.  My doctor's office used to do my cholesterol with a finger prick, and tell me the results in about a minute, but for some reason they have stopped doing that and again now require a blood draw from a vein. I suppose it is insurance policy changes.  Biopsies vary dramatically: some results take a week or more, but people undergoing cancer surgeries have a pathologist standing by who gives essentially immediate feeback to the surgeon, while the [patient is on the table. This is used in prostate and breast cancer surgeries especially, where adjacent lymph nodes are tested. The surgeon "farms" these until several rows of nodes come back negative.

I will share a secret:  how long labs take is not so much how long it takes a machine to spit out the results, as it is how long it takes a medical practice to share those results.  My wife had a mamo over a week ago. Very likely the radiologist had reviewed the film and written his analysis by the next day, if not that same day. But her results did not come in the mail for over a week.  If she had called her Gyn doctor the day after the test, she would have most likely gotten the results (thankfully all normal) over the phone then.   I have been awaiting test results and called and spoken to the receptionist and gotten her to read the results to me over the phone  !   The doctor probably would not have contacted me via his RN for another week or so.   In other words, sometimes getting information you are worried about is as simple as bugging them for the information.  I go to a lot of specialist (urology surgeon, lung doctor, ect.).  I pull the lead RN aside and ask that they call me with results as soon as they come back, telling them I do not want to wait on results via the mail. Every one of them has been cooperative and never seemed bothered by my request; most say to me that they fully understand.

I hope you get your results soon, and that all is well,

max

claire1201
Posts: 15
Joined: Mar 2014

well everything is good to go according to the Dr. He said to get another ultrasound for a few months from now and we will compare the lymphnodes and see what's going on there. Thanks for all the chats and input guys. I wish you all the very best in life!

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

I was diagnose anemic when I was a teenager. My Gyn figured it would go away after my hysterectomy and the blood test done on a followup visit seemed to agree. About 6 months later I felt like I was so tired. I decided to try taking the iron pills again and started feeling better. When I told my Gyn about this she thought it was just because my body was so used to getting the supplement iron. So I've continued take them. 

As to my cancer, I think I fall into the "dumb luck" category. No cancer known on my mom's side and a few people on my dad's side. None with a blood cancer. 

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