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I was just admitted in the hospital last night have a long story hopefully it may make sense to someone that can offer advice

Sarah_Stanley1
Posts: 6
Joined: May 2010

Hello everyone.. I know this is long and I know you all go through so much but if anyone may have some advice I would so appreciate it thank you and god bless!

I have had a feeling like a lump in my throat when I swollow on the right side just under my jaw bone at first it didnt hurt at all just was annoying But during the last almost 5 months now it began to get worse and would feel kind of like a burning sensation when I would drink drinks.... I started getting really really bad headaches where I was taking about 16 OTC Ibprofein a day. and just generaly not feeling so good. I took some antibiotics that I already had thinking I must have some kind of infection. When nothing changed I went to the doc and he gave me more antibiotcs and did blood tests which came back normal I went to another doc who said that he could feel the small mass in my salivary gland or it could be a lymph node. ordered an upper Gi and Ultrasound then before I got the tests done I noticed another hard fixed lump on the side of my neck that does not hurt but it sticks out and is hard. ( Upper GI & Ultrasound were normal and was awaiting ENT appt for more tests )

I ended up at the emergency room yesterday after I have had shortness of breath and a burning sensation in my chest when I breathe in deeply it feels kind of like it would if you had bronchitis. I called my PCP and he said that he is concerned about what has been going on with my throat and they have had a hard time getting my authorization to and ENT and suggested I go to the ER. I wentn told the **whole story*** and they did a ct scan with out contrast and blood work up and a throat swab.

A few hours later they were admitting me. The CT scan showed:

Findings:
The exam demonstrates diffuse cervical lymphadenopathy bilaterally these are predominantly 1 cm in size and invloved cervical levels 1-5 no evidence of mass or abscess the partoid and submandibular glands as visualized are grossly unremarkable the soft tissue planes are preserved and unremarkable. I see no evidence of airway compromise the epiglottis is unremarkable, no laryngeal abnormality is seen, no vascular abnormality is seen.

Impression:
nonspecific diffuse cervical adenopathy is noted as discussed above. The possibility of lymphoproliferative disorder cannot be excluded. Clinical correlation is advised. No distinct neck mass or absess is discerned.

======= end of report=============

They admitted me said that they wanted to see if there was an underlying infection all though my blood test was normal. They said they also wanted to find out if there was some kind of disease process going on.

In the morning another doctor came in and said that they admitted me for a biopsy and that no doctor was going to do that on the weekend and that it should be done as outpatient and sent me home.

SO frustrated at this point and frankly very scared

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Sarah,
Everything you have gone through is very scary indeed. Once you get the biopsy done you will have alot of your questions answered. The one fact I do know about tumors and lumps is that a biopsy is definetely needed to determine if cancer is present and if it is malignant or benign(sp). Once all of this is determined you will be on the right path to figuring out what to do next. Please share with us what you find out. It's going to be very nerve wracking for a period of time until more is learned, so if things get too bad for you please come back here for moral support. My heart goes out to you and hope you get some answers quickly....Sue

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

It's only natural to have those feelings, like Sue said once they run more tests they will have more answers. Stay strong, ( easier said then done) trust your doctors. Good luck Vinny

Sarah_Stanley1
Posts: 6
Joined: May 2010

For reading and replying to what I have been going through. I have an apointment with an ENT on Sept 23rd... It is the soonest they had and this is the 3rd ENT I have tried to get into so I will keep the appointment and if the breathing gets worse I guess just go back to an ER. It's just between now and then that I am really going crazy. I have also read not to have a needle biopsy since this isnt always accurate? My PCP seems to think because my blood test was normal I am fine and hes just sending me to an ENT to make sure there isnt anything that was missed. Is this true? Thank you everyone and god bless!

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Sarah,
I agree with allmost60 100%. You really need to have a full biopsy done for the affected area, my first biopsy was a needle one that produced false results. Once this is complete then a course of action can be started.
You mentioned going to your PCP and the ENT, but has anyone talked of sending you to Oncology/ Hemotology. Not to scare you, but I had been found to have stage3 Hodgkins and all my blood labs were clean also. PCPs are fine, but with this going on you really need a specialist. They can advise on different courses of treatment and provide access to different coping methods. Again, please talk with your PCP about seeing an Oncologist.
Take care, keep us posted.
GalacDad

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Sarah,
I'm going to go out on a limb here and say that I'm not liking the way your PCP is thinking with all of things you have going on. I "firmly" believe that a biopsy is needed. One of the tumors/lumps needs to be surgically removed and sent off to a lab for a series of chemical stains and analysis to be done. I had a tumor surgically removed from my groin. Only after the results came back from the lab in Seattle were we able to pin point my disease to NHL-grade2-follicular. Through a series of slicing and dicing of the tumor along with chemical stains and flow charts, were they able to make the firm diagnosis of the "exact" cancer I have. After this was completed I was scheduled for a Bone Marrow Biopsy to see if there was bone involvement. In my case there wasn't any cancer as of yet in my marrow. The staging process comes next... I have tumors located in my groin, abdomen and neck which puts me at a stage 3. If and when the cancer goes somewhere else I will advance to stage 4. There is a whole series of things that need to be done besides blood work to determine if you have cancer and for your PCP to not be refering you for more "extensive" testing is very disturbing. This is just my opinion and can only tell you what was done to determine my cancer. It sure entailed more than a little blood work. The CT-scan I had required me drinking some kind of dye to hi-light the hot spots. If you didn't have that done at the hospital then you may not have gotten an accurate reading on the scan. My advice is to demand a surgically removed tumor for biopsy, where they can disect the tumor at a lab. The month waiting(Sept 23) to see the new ENT is so typical of the "Waiting" process before final diagnosis. Gripes me to no end that anyone has to go through this and I'm so sorry for you. I've been waiting and testing since May 25th and will just now be starting chemo next week. The waiting is absolutely the worst Sarah! Please keep us informed and we are always here to help you. BTW..there are some really smart people on here that can help you wayyyy more than me. Just ask...they will help.I'm just telling you what I had to go through to get a diagnosis and you arn't even close yet, but SHOULD be. ??????? your PCP...he isn't acting concerned enough in my opinion. God bless you and hang in there...
Love...Sue

Sarah_Stanley1
Posts: 6
Joined: May 2010

I finally!!!! got into the ENT on October 26th.... That is how long it took for me to get in... I saw the ENT and he looked very quickly into my throat felt my neck for lymph nodes and said that yes the CT scan showed swollen nodes but anything can cause that and I mentioned to him how I wasnt sick and my blood test showed that. He said that they are not large enough for him to want to remove any and gave me a script for antacids and said to come back in 2 months and if at that time I still felt the same they would do another CT scan this time with contrast. He told me not to be worried that he thinks I am fine....

I have started itching all over which I normally do not itch because I have oily skin and my skin is never dry.... the only other time I itched this way was when I was pregnant and had collesatas of the liver, for the last week I have been wanting to itch my skin right off generally all over no specific area.

Should I call or am I being paranoid?

Thank you everyone god bless you all...

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sarah,
It is really hard to say if you are just being paranoid or not. I am sure you are aware that itchiness could be one of the signs. Since you are already aware of that it may just being your mind playing tricks on you,but then again it could be real. I would call the Dr. and hope he will check it out and not let it just go. John (FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Sarah,
If it was me I would call the doctor. But then again if it was me and I had swollen lymph glands and was still being given the run around about getting the contrast CT scan..I'd be shopping for a "NEW" doctor or a second opinion. I just feel like you have not been taken serious enough from the beginning when you first landed in the hospital last August. Are you in a position to find another doctor or get a second/third opinion? You are your own best advocate and this may require you demanding better answers. Keep us informed Sarah..your coming up on 3 months now where things haven't changed or gotten better for you...it's time to get tough, in my opinion. Love...Sue (FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sarah,
After seeing what Sue wrote I have to say I agree with her 110%. It is time you got tough with them. Being paranoid has nothing to do with it when that much time has gone by. John (FNHL-1-4A-5/10)

Sarah_Stanley1
Posts: 6
Joined: May 2010

Thank you for your support everyone, I really appreciate you taking the time to offer your advice. I will call. Hope you all doing good. God bless you guys

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

I would have to agree with everyone... continue to get as many opinions as you can and get a doctor that will listen. I'm with Sue ~ I'd be finding me a new doctor. I went through a few of the same things when I was first diagnosed. Started with the itching, they played it off and gave me some meds. My ENT found the nodule in my neck, asked if I was itching I said yes and he said the lymphnode needs to be removed for testing - he didn't even hesitate and he didn't even ask if I wanted a biopsy, he scheduled me immediately for surgery the NEXT day. He was my angel! I've been having swollen nodes again that freaked me out along with itching. I went back to the same ENT he assured me I looked okay, but said I needed to follow-up with the Oncologist who handled my Hodgkins the first go around. He has since done a battery of tests... Sed Rate (which is a good blood test for hodgkins, not by any means an indicator but if its off it can lead them in the right direction), a chest x-ray and abdominal ultra sound. I'm just now waiting for results. As you can see these doctors are playing an active role in my health. You my dear need to find someone to do the same. I hope that you can get some answers and know I'll be saying a prayer for you....and keep coming back to these boards, the people are wonderful and they have helped me these last few weeks with my fears and anxiety. Andrea

truckingalong
Posts: 444
Joined: Aug 2010

My experience was the run around with my PCP - she said I'd wait if I were you about getting a lymph node biopsy - must wait until the node gets to be 1.5 cm. I later learned that was crap!! I had swollen lymph nodes in my neck, on the side of my neck and in my groins and being unaware that I have them also under my arms plus loss of 30 pounds and high sed rate. I was sent to different specialists like rheumatologist, ENT, hemotologist, etc. and did not find anything. Finally, I convinced my PCP to order me a biopsy through an oncologist. Bingo, I have Hodgkins. I felt this could be found out 7 months earlier. Be your own advocate and you have my empathy. I hope things work out for you promptly! Oh, by the way, I changed to a new PCP for peace of mind.

Liz

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Liz,
Let me get out the soapbox.!!! We have all been around long enough to know this is nothing but a business for a great many so called Drs. and at our expense to boot. They can't be so simple minded not to know the signs of lymphoma. They send us to their comrades at arms so they can collect their insurance fees. We have all been thru this stuff. after we go thru the gaultlet of all the specialists and their high fee test we wind back up where we started from. Usually months down the road. It doesn't take a rocket scientist to figure it out. I guess I will hear it from some out there. Sorry people, but that is the way it is. John(FNHL-1-4A-5/10)

truckingalong
Posts: 444
Joined: Aug 2010

John,

We gotta make this issue louder. Many of us got diagnosed unnecessarily much later from those wimpy doctors. I realize it is best to seek 2nd and 3rd opinions rather than being sent to inappropriate different specialists and wasting my time.

Thanks,
Liz

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Liz,
I agree with you 100%. Sometimes we get caught up in the old myth that Drs. know it all or maybe we want to believe that. We have to tell ourselves its our bodies and we are going to find another opinion somewhere and hope we get the treatment we need. Its not just with our diagnosis, but other sicknesses as well. I did luck out with my early diagnosis,but I was still refered to an associate Dr. I don't know if he was the best or not,but none the less he was an associate. John (FNHL-1-4A-5/10)

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, John. Wow, this took a long time for me to really get to this - and be my own advocate!! Yeah, it was the old myth and we as humans do fall into our own denial but still too often doctors are the ones that are too often could have done a better job because I know from my heart they could have. Liz

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