Been Given The Run Around!

Hi anyone

I would like to know what you think on the following....

Its been 4 months since i discovered a olive size lump above my right collar bone.

Went to see a doctor 5 days later after discovering lump. He believes it could be a lymph gland swollen. Although i had not been sick with the cold. He said take some antibiotics (for soft tissue infection) for 12 days and go back and see him. And said if there was no change, he would refer me to go and get a biopsy!

12 days later, and feeling anxious as it only had a slight change in size being a tad smaller.

Wanted to see doctor, but he was booked out. So i decided to see another doctor to get a second opion. As im not keen to have a biopsy.

Second doctor, says its probably a cyst. And basically says i should not worry about it! So i decided to let some time pass, 3 and half months pass, and still not gone. More anxiety and frustration for me! I go back to the second doctor, and bring it up again, that im not 100% happy that there is a lump sticking out on my neck!!!. At the same time, i feel like to doctor doesnt take it seriously! (Which conflicts with every day advise, that whenever you find a lump, it should be checked out!) She finally says she will give me a referal to see a specialist! At last maybe im getting some where.

Go and see the specialist. He has a quick feel on the neck, and checks my glands, under my arms and hip region. He couldnt detect any other lumps. Oddly enough he said, well its a lymph gland, and not a cyst. And i have the option to get it cut out, which he was glad to mention it would leave a scar, or i could go and get a biopsy done! I opt for the biopsy (no escaping it)

So i get the referal.

Get the biopsy, which is 4-6 needles in the lump. All they could get was blood.
Later go home. Next day, get a call i got to go through it again, as the results were inconclusive. Yippy, go again! NOT!!!!
Go again, this time they get another doctor to do it. A real idiot too. Would you believe he made me feel like i was wasting their time! As he couldn't get anything but blood! He even asked me what exactly i had told the specialist. He said it is not a lymph gland, but something else. What is it then?? Carnt get any answers!
Later go home frustrated. The following week i got a call from the specialists secretary who said the second biopsy was also inconclusive. Just great!! NOT!! now next step is to get a biopsy done with the ultrasound done at the same time, so that they can see they are getting into the lump.
So i get a referal to go and get this done. They tell me, I should have had an untrasound done, even before i had the biopsy done! Great! NOT.
So i got to go back to the specialist and get another new referal done just for a untrasound.
Get that done, go and get unltrasound done, and listen to this woman who thinks im wasting my time, and says its just lymp gland, and that the doctors don't know what they are talking about. (Nor does she, as she was telling me all the opposite, and she is not even a doctor!)
I said can you see a lump in the neck on the ultrasound? SHe says she cant tell me, but that is for the doctor to say! How stupid, when its on the screen in fron of her!
After I go home, feeling more frustrated and with no straight answers!
Aftter a few days later i get a call from them to come and make an appointment for the needle biopsy with the untrasound done at the same time! (Ive probably lost you readers already! with all this)
So next week im going to have this done. Im thinking of just dropping the whole issue and not going cause no one seems to know what they are doing! Currently the lump is playing games with me, as it some times shrinks so much and then returns to olive size the next day. I just want to know what the hell it is, and it seems its too much trouble for the doctors and the so called specialists to give me an answer for!
I found out recently from my uncle that my grandmother died of lymp related cancer. So alarm bells did go off, and i feel like im not treated appropriately by the doctors but given the run around. Im 29, a mum, and not happy with this fiasco!.

Sorry about my winging, and looooong message. And opions worthy would be great

Regards Mel

Well, I'm no doctor but I do know an olive size lump anywhere isn't completely normal! I have many tumors in my parotid glands which my Rhuematologist tells me can eventually turn to lymphoma. In fact his DX for me is psuedolymphoma, which not many doctors will acknowledge, especially insurance companies! With all that I've been through I have one thing I want to tell you....Don't Give Up!!!! Stay strong, don't get discouraged! I have Lupus, RA, Sjogrens, Vasculitis and have gone through many a nightmare with the different procedures and treatments that my specialist(top in his field, who is not covered on my insurance)wants me to pursue. I have had to get referral after referral and hear so many "no's" that I wanted to give up so many times! My first 'battle' 6 years ago took 2 years to finally get a much needed surgical biopsy! The medical world is unfortunately controlled by the insurance companies! Instead of the patients best interest at mind they have to worry about the $$$ and what can be put through. Most doctors are caught up in this society and sadly are not in their profession out of compassion for their patients. Anyhow, like I said I've been through many battles just trying to find that one doctor with a heart and willing to figure things out, at any cost. I will pray that you find that doctor that can answer things for you! Just one week ago, after seven doctors and a year of waiting for referrals I found a doctor that said YES! It took her a measly 1 week to get Rituxan treatments approved for me. There are some good doctors out there, it just takes a while to find them! Good luck!
Blessings, Victoria aka crazyhatlady

Thank you for your reply!

Im sorry to read all the suffering that you went through! I don't know how i would get through something that you have. You are a very brave and strong person! I see your point about insurance issues, you could be very well right! I should mention, im not suffering any sort of effects from this lump as yet. Only gets tender when i keep pressing it. I will this week hopefully get some answers. This sounds ironic, but im worried when i get that test done, the lump wont be big enough for them biopsy it, as it fluctuates in size! Which is frustating!!!. I can predict it already, when i get there, the doctor will say, why are you worried or here, there is hardly anything there???, and then the time i get home, its swollen up again and I'm back to square one!

I said to my husband im thinking of cancelling the appointment, but he says no dont do it, and my friends say the same thing, that a lump even if it fluctuates in size should not be there after so many months.

Thanks for your prayers, and i hope you will recover yourself soon.

regards Mel

Hi anyone again

Well here is an update, sort of....

I went for the appointment. Only to wait forever in the waiting room until I was finally attended to. I wanted to get answers this time from some one, instead of being given the run around. Finaly i talked to a woman doctor, who looked at the last ultrasound. I asked her in plain english if there was something of concern in my neck, or am i just wasting my time and everyone elses!??? She said there is something there, but as far as she can tell, it doesnt look like a lymph gland of cyst. She is baffled about it to. After a chat, i looked at the time and not realised how late it was getting, and thought oh no i got to go, as I have to rush and pick up the kids from school. I tried to get a friend to do this, but she wasnt answering her phone. On the end i couldnt get the biopsy done, and had to make the appointment again for another time. It frustrates me that they made me wait that long in the waiting room, and on the end i had to rush and go, and not get the biopsy done! Damn.

So its off to the doctors again next week! Whoopie....NOT...

Thanks for reading my unglamorous humor!

PS, the doctor also said, i may still need to get a operation to get it cut out, as this biopsy that i will get done with the ultrasound, doesnt guarantee any results, and may be inconclusive just like the two previous ones done at pathology. But what can you do?!

Mel

My husband took a shower after working in the yard in Sep04 and found a large baseball size lump under his arm that popped out of no-where. Normally this type of thing is treated as an infection with antibiotics and if it doesn't respond (which it didn't) you are referred to a surgeon for a consult.

So mid-Oct (3 hurricanes later) we were at the surgeon's office who did an ultrasound and was inconclusive regarding what the-now grapefruit sized lump consisted of - it wasn't fluid. Biopsy time - came back "Fat Necrosis" which basically death of tissue, boy were we naive.

Asked the Doc, should you do some other tests like a chest Xray or CAT Scan; after all we don't know what caused this and the lump is still there. On top of that - now listen to this one - the lump got even bigger and filled up with fluid - surgeon said complication from the surgery (not!).

Anyway, lump now draining and soaking the dressings I made from super-maxi (female) pads every couple of hours. Doc says, oh its ok, it just needs to heal....hmmm do we need to look into hyperbaric treatments..wound specialist (i.e. go somewhere else).

Things got a little better, but right after Xmas he started staying in bed, lots of pain, couldn't sit to eat. Took him back the to doctor, he sent them for physical therapy (wrong, but probably saved his life in the long run). They did massage, applied heat (not the thing to do on a cancer pt.). Three days later cancer had spread to the skin and gone "systemic". Told Dr. I had to see him immediately. Finally decided to send him to Mayo after I jumped up and down, pleaded with him etc..

Meanwhile, Mayo said, we can't see him for three weeks, but hey guys get off your butts and get this man a chest X-Ray, CAT Scan and bloodwork. Well it took two weeks for these idiots to biopsy the thing and get the results back - initially Stage 2B Analplastic Large Cell Lymphoma - we had to plead for an oncologist to see him before he died (he had lost 50 lbs in a month, was a big boy to start with).

They thought he wouldn't make it through the first chemo, put him in the hospital here for 8 days and he lived. Not trusting anyone's word at this point, I took him to Mayo and they put him in the hospital here for 4 days and determined that he was really Stage4B because the cancer was in skin, muscle, lymph nodes and his upper rib BONE. Thankfully it was NOT in his bone marrow.

Mayo recommended more extensive treatments than the oncologists suggested here and he did very well through the chemo and radiation. He is still in remission today 10/20/06 and I cherish every day with this man.

I wouldn't be afraid of a surgical scar from removing or biopsying the site, I personally can speak to this, I have a scar on my chest from aneurism surgery I had 17 years ago when I was 30. At a minimum, you need to get a biopsy and stop running away from getting it done. My husband had to get needle biopsies and he wasn't in much discomfort afterwards (his cancer was all over and was inoperable).

If the Dr.'s ignore your requests then push them, they can get sued if they misdiagnose you (doesn't mean much here in FL, but maybe it does elsewhere..another subject), but the concept of getting sued scares them non-the-less. Remember, its your life at stake and not catching a problem early could cause things to progress and be harder to treat. It sounds like whatever it is, the lump isn't too large yet. Also, there is a strong chance this is some type of cyst or benign growth, so I would not say the "C" word until you are diagnosed with it. But do get it checked..your life and preserving it for the ones that love you is well-worth the effort.

Take my word for it...I wish I had kicked some butt alot sooner and I regret not following my instincts.

Best of luck to you.

Read further through your thread and evidentally you have had a couple of biopsies and yes, you are getting the run around or not getting a good diagnosis. Don't be afraid of getting whatever it is resected if necessary.

Problem with my husbands initial biopsy was that the Dr. didn't biopsy it deeply enough to get to the cancerous tissue. You may also want to get them to give you a CT scan or Chest X-Ray. My husband's sonogram only showed the immediate area and if they'd scanned him at the beginning it would have been caught alot earlier.

I hope everything worked out for you well this past week. I look forward to hearing good news from you!!

Keep pursuing it if you aren't happy with what you hear....

Sorry to read all the struggles and run around you have had to endure. Its amazing to read all the issues that people have had to go through just to get to the bottom of things, that i can see that my small problem doesn't compare to how much you and other people have gigantically struggled! I hope that IF my problem does grow bigger, that i can have as much strength and courage like you and others have found.

Even though i havent been told that its the big `C'..it does sit in the back of my mind. Ive asked myself a 100 questions, from being the obvious, is it Hodgkins disease, a cyst, a vein a muscle to cat scratch disease?. The internet can be helpful with information, but also at the same time create major worries!

Its great to read that your husband has made it!

I know i must sound pathetic about worrying about getting surgery. Its not just that, and not just the scar factor, depending how big it is though, what really worries me is im scared that IF it does come down to that, there is a risk that they could cut a facial nerve or muscle, and leave some sort of paralysis. (cant spell!)... and i dont know how i could handle that?

Anyway my appointment is in 2 days time, so hopefully i can get some more answers to that.

Im writing from australia in nsw by the way.

take care until next message.

Melissa

Well heres the latest `drama', if anyone is interested.

I went to the MRI, to get the fine needle biopsy done with the ultrasound. Again i waited over half an hour before being seen to. Finally when it was my turn to get the procedure done, it was the same doctor and her assistant. The assistant was friendly, but i found the woman doctor not so in her manner or attitude. (I think she was annoyed about the other day when i had to leave at the last minute, which is their fault for attending to me at the latest minute). I sometimes wonder why they even have appointment times at all! As when you arrive on time, or 5 mins before, you still end up waiting over half an hour! Despite this i apologised for the other day, she should took it lightly. Saying "no thats fine" but not being genuine in saying it.

Anyway while getting the procedure done, first with the anasthetic (cant spell!) and then doing 4 needle biopsies, i just asked her a few simple questions. In between the needle times. Such as what sort of fluid was coming out, blood, or clear lymp fluid. She reluctantly said some blood but not much. I then asked her is the lump shrinking or draining down in size while the syringe is filling up. She gave me a odd answer, saying, no the lump is not shrinking, and then went on to say, lumps that are solid based dont have blood, and wont shrink. (I then thought, well if shes getting fluid from it, then the lump should shrink, as i know its not solid, as it fluctuates in size). I was about to ask her this, to clarify what she way saying and she actually got snappy at me and said WELL CAN I GO AHEAD WITH THIS NOW!..as she was putting the 4th and last needle into my neck!
SHe made me feel like some idiot, asking too many questions even though they were only 4 questions!. So i just lay there and didnt say anything more!. As soon as she got what she wanted, she put it on the clear microscope plastic disc thingys. And simply walked out and left!!! Not even a good bye or good luck!. Or an answer to my last question! What a COW! After when i got off the bed, i made a comment to the assistant, saying candidly, gee i must have asked `too' many questions!! The assistant just half laughed it off.

When i left the place, a few things crossed my mind, and I felt angry. I thought to myself, what right do they have to treat patients like crap! Don't i have the right to ask questions, concerning my body! Especially if it could be somthing serious, and you want to know what it is, and what can be done about it!

I thought to myself, that woman doctor is so up her high horse with her snotty attitude, I should have been more firm and demanding with my questions!

ANyway enough of my winging....

Now its waiting time again, to get the results.

Anyone want to leave simular stories on doctors snotty attitudes please share it!

Mel

I forgot to mention that when i was getting the FNB done, the snotty doctor mumbled to her assistant something about a vascular mass?

If anyone could enlighten me on what she is talking about would be great.

Regards Mel

Went to the specialist, and have decided to get the operation done.

Regards Mel