It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lymphomas Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-10-2004, 05:58 PM   #1
Junior Member
 
Join Date: Aug 2004
Posts: 27
supmom810 HB User
Question How common is misdiagnosis?

I was wondering how common it is to be misdiagnosed and what everyone went through before their diagnosis? I have a 13 yr old who in May had surgery to correct severe Pectus Excavatum. He had to have blood tests and Ct Scan prior to surgery. His blood tests only showed low MCV and high Mono% before and after surgery, his CT Scan showed a soft tissue density in the anterior mediastinum, as well as mediastinal and axillary adenopathy. The surgeon said that the mass mentioned wouldn't interfer with his chest surgery, but he would have another radiologist look at it. I really didn't hear anything more of it, so thought it ok.
While my son was in the hospital, I noticed a large lump under his arm. I thought it may be infection from his surgery, but he told me that it had been there since last summer. I again didn't think anything since it had been there so long. He said he didn't tell me because it didn't hurt. He was already on IV antibiotics and was released from the hospital with another 10 days of zithromax. I figured if it were an infection, that would take care of it.
Just recently, in the past month, it has gotten larger. I started doing some research and am now worried. I took him to his GP, who said it was 2-3cm and with the mass noted on the CT Scan, he wanted us to see a surgeon to possibly have it biopsied. First surgeon we saw said she didn't think it was anything and snapped at me when I question about the other abnormalties "that isn't wasn't a bad thing that he was healthy". I left there very upset. I called his GP back and he referred us to a Pediatric Surgeon. Ped. Surgeon said that his node was about 1-2 cm and he wanted to keep a close eye on it. My son is again on 7 days of Vantin (antiobiotic) and we are to return for follow up in 3 months. He really doesn't have any other symptoms except extreme fatigue and easily out of breath, but we thought that was from the Pectus Excavatum. He even fell asleep in 5th period yesterday in school. Not a good thing to do the first day of school.
Does this sound familiar to anyone? I want to keep a positive outlook, but am concerned that if this is some type of Lymphoma, how far can it advance in 3 months. Should I take him back sooner and insist on more tests? Any suggestions would be greatly appreciated.

 
Sponsors Lightbulb
   
Old 08-10-2004, 06:40 PM   #2
Senior Veteran
 
Join Date: Dec 2003
Posts: 897
Marimac HB UserMarimac HB User
Re: How common is misdiagnosis?

Quote:
Originally Posted by supmom810
I was wondering how common it is to be misdiagnosed and what everyone went through before their diagnosis? I have a 13 yr old who in May had surgery to correct severe Pectus Excavatum. He had to have blood tests and Ct Scan prior to surgery. His blood tests only showed low MCV and high Mono% before and after surgery, his CT Scan showed a soft tissue density in the anterior mediastinum, as well as mediastinal and axillary adenopathy. The surgeon said that the mass mentioned wouldn't interfer with his chest surgery, but he would have another radiologist look at it. I really didn't hear anything more of it, so thought it ok.
While my son was in the hospital, I noticed a large lump under his arm. I thought it may be infection from his surgery, but he told me that it had been there since last summer. I again didn't think anything since it had been there so long. He said he didn't tell me because it didn't hurt. He was already on IV antibiotics and was released from the hospital with another 10 days of zithromax. I figured if it were an infection, that would take care of it.
Just recently, in the past month, it has gotten larger. I started doing some research and am now worried. I took him to his GP, who said it was 2-3cm and with the mass noted on the CT Scan, he wanted us to see a surgeon to possibly have it biopsied. First surgeon we saw said she didn't think it was anything and snapped at me when I question about the other abnormalties "that isn't wasn't a bad thing that he was healthy". I left there very upset. I called his GP back and he referred us to a Pediatric Surgeon. Ped. Surgeon said that his node was about 1-2 cm and he wanted to keep a close eye on it. My son is again on 7 days of Vantin (antiobiotic) and we are to return for follow up in 3 months. He really doesn't have any other symptoms except extreme fatigue and easily out of breath, but we thought that was from the Pectus Excavatum. He even fell asleep in 5th period yesterday in school. Not a good thing to do the first day of school.
Does this sound familiar to anyone? I want to keep a positive outlook, but am concerned that if this is some type of Lymphoma, how far can it advance in 3 months. Should I take him back sooner and insist on more tests? Any suggestions would be greatly appreciated.
First of all do you own any cats or is your child around household pets such as hamsters, rabbits or neighborhood pets. Ask your pediatrician for a test for mononucleosis. This disease is very common in the young and Cat Scratch fever is a virus that may or may not be spread by an actual cat scratch. Often times in the past people were diagnosed with some type of Lymphoma when it was a virus. Start with the simplest explanations first. Did your son finish the medications that were prescribed in the past? When an antibiotic or antiviral medication is not completed the condition can worsen or become ineffective towards fighting the infection or malady. But, a mother's intuition is sometimes better than all the science in the world. After considering these questions, go with your own best intuition, you know your child.

 
Old 08-10-2004, 07:31 PM   #3
Junior Member
 
Join Date: Aug 2004
Posts: 27
supmom810 HB User
Re: How common is misdiagnosis?

Yes, we do have a cat. Actually the boys adopted him as a kitten from our local Humane Society 3 yrs ago for me as a mothers day present, but he was declawed before they brought him home. He did finish the 10 days of zithromax and tomorrow will be his last day on the Vantin. I asked about Cat Scratch fever and his GP didn't think that was it. He did have a mono spot done in February when we first noticed the fatigue and being easily out of breath, but that came back neg.
I'm probably worried over nothing, but it's the what if that I worry about. What if it is something more serious, would 3 months make a difference? I know you all can't diagnos him, but was just wondering if anyone had an experienced like this before.
Thank you for your response.

 
Old 08-12-2004, 09:49 PM   #4
Senior Member
 
Join Date: Apr 2004
Posts: 232
ysco HB User
Re: How common is misdiagnosis?

There are much more common causes of enlarged lymph nodes than lymphoma, all the more so in young people. On a side note, as far as I know, teens (although very rare) who do develop lymphoma tend to develop almost exclusively an aggresive type, which progress rapidly over a course of days and weeks. Luckily this doesn't seem to be the case with your son.

You did mention it had gotten larger, and that it's painless. If it actually did get larger, it is particularly a red light. though, I get the impression from reading your post you are not sure if it did nor what is the real size of your son's lump, as you got different replies from different doctors which is confusing.

In my opinion, it is not likely to be something serious. It may be related to this condition your son has, amongst numerous possible causes. However, if you do have a bad feeling about it, and you can't get it out of your mind, insisting on further prompt testing is definitely warranted, to be on the safe side and for your own peace of mind. If that's what you decide, you should see a surgeon and insist on performing a biopsy of this lump. Either way, biopsy at this area is really not a big deal.

Good luck.

 
Old 08-12-2004, 11:12 PM   #5
Junior Member
 
Join Date: Aug 2004
Posts: 27
supmom810 HB User
Re: How common is misdiagnosis?

Thank you for your replys. We were back at the Dr.s again today. My son continues to fall asleep in class and just feels as he puts it "like yuck". Dr. tested his urine which was fine and is running some blood work. He pretty much is testing everything, mono spot again, thyroid, CBC w/ diff and blood chemistry. Hopefully by tuesday of next week, we'll know what is going on.
Thanks again

 
Old 08-18-2004, 09:35 PM   #6
Junior Member
 
Join Date: Jul 2004
Posts: 44
rach_81 HB User
Re: How common is misdiagnosis?

Hi supmom - I was ready your post - how is your son doing? Is he feeling much better? I too have a similar situation. I have a mass in my anterior mediastinum picked up by a CT when having chest pains.... recently I have been constantly breathless etc and have a couple of enlarged nodes in my neck. At the moment I am awaiting a specialist appointment and although I'm reasonabling sure this is probably just some kind of infection I understand your concern I would seek additional opinions on the matter if your not satisfied and until your sure your happy with the outcome you'll most likely worry yourself about it.

By the way, my mass is 2.3mm x 3mm and I too was told it was nothing to worry about and was turned away from two doctors (with no follow up at all) because apparently It can't cause me any harm. I wasn't happy with that as the final report stated it 'probably' was residual thymus. The first doctor reporting on the CT scan told my GP it was enlarged Lymphs in the chest - possible signs of Lymphoma?! I freaked and naturally am still a little concerned they might have been right the first time.

All the best and I hope all is well

 
Old 08-18-2004, 11:23 PM   #7
Member
(female)
 
Join Date: Sep 2003
Location: Minnesota
Posts: 91
nellie99 HB User
Re: How common is misdiagnosis?

Supmom-
My son had an enlarged node while we were living overseas. After doing two rounds of antibiotics and seeing several American doctors, they all suggested getting him back to the States for immediate evaluation. When we got back here, he had an ultrasound, and the radiologist's report said it was highly suspicious of lymphoma. It was measured at 6cm. We were sent to a surgeon, who said he wanted to "watch" it for a month. At that point, I called my PCP and insisted on being sent to the children's hospital because 1) I was not going to watch it grow another month and 2) The surgery involved a lot of delicate nerves so I wanted a surgeon who did this on a regular basis.

My son had the surgery a week later, and the initial report came back Hodgkin's lymphoma. However, two weeks later, the final report indicated that it was a reactive node.

I know first hand that it is not easy as a parent to sit back and just take the watch and wait approach. I refused to do it when I got back to the States. My son's lump wasn't going anywhere, and they knew it would have to be removed, so it was pointless to sit and watch it grow. I know that I would definitely not wait three months to see what it does, and I would not let them do a fine needle biopsy. The doctors at Children's said that should NEVER be done on children because they may miss the cancer cells.

Please let us know what's happening.

Nellie

 
Old 08-19-2004, 04:51 AM   #8
Junior Member
 
Join Date: Aug 2004
Posts: 27
supmom810 HB User
Re: How common is misdiagnosis?

He is still feeling tired and easily out of breath, but the good news is his blood work came back pretty much normal. He had some low ranges in a couple of areas, but Dr. said nothing to be concerned about. They ordered an Ebstein Barr Virus serum test. The mono spot came back negative, but the Dr. said something about it possibly being inactive. The antiobiotics didn't help with the node enlargement under his arm. We return on monday to go over the EBV tests and I guess go from there. Dr. asked me about him being Depressed. I'm kinda having a hard time believing that because he has always been such a happy go lucky kid, this just isn't like him and I can't think of anything that would make him depressed, except for him not feeling well. He enjoys school and has lots of friends. To me he's a normal teenager.
Thanks everyone for your thoughts and kind words. We will get to the bottom of this and hopefully with some goods news. Does anyone know if EBV can cause this type of fatigue? He has been tested for mono on a couple of occasions in the past, but all have come back negative. Can someone get EBV, but not have mono? Also, would having EBV, although inactive cause him to itch all over? Thanks again.

Last edited by supmom810; 08-19-2004 at 04:53 AM.

 
Old 08-19-2004, 10:21 PM   #9
Member
(female)
 
Join Date: Sep 2003
Location: Minnesota
Posts: 91
nellie99 HB User
Re: How common is misdiagnosis?

I hope you mentioned the itching to your doctor. That is a symptom of lymphoma, which I'm sure you are probably already aware of. Don't accept normal blood tests as a reason to quit investigating, because it can take awhile for cancer to affect counts. I'm not trying to frighten you, but I have learned that the "norm" isn't always a good method of diagnosis when dealing with health issues. Everyone's bodies can respond to illness in a different way. Just make sure you get to the bottom of it. If it turns out to be a reactive node--great! If not, at least you'll know what you are dealing with.

Good luck,
Nellie

 
Old 08-20-2004, 04:07 AM   #10
Junior Member
 
Join Date: Aug 2004
Posts: 27
supmom810 HB User
Re: How common is misdiagnosis?

Thanks Nellie. The Drs. office called me yesterday to tell me that his serum test came back positive for the Ebstein Barr Virus. Since his is mono spot was negative, they think that he has had mono sometime in the past and that his symptoms are from that. I did ask about EBV causing itching, because I have read that it also sometimes causes a rash (but he doesn't have a rash, just the itching). Dr. doesn't think so and wants us to give it a couple of weeks (I guess that's better than 3 months) If his symptoms get worse or don't dissapear, then he wants him in the office again. He started to run a low fever, 100.6 last night, so maybe he is in the early stages of Mono?
Although I realize lymphoma is rare in children, it's just bothers me that every test that he has had, the abnormalties all have lymphoma in common. Maybe I'm just over reacting, but the Dr.s don't seem to put this together. I want to stay positive, but it's hard when there possibly could be something serious going on inside of him. I'm seriously considering asking for a biopsy of his node, just so we can put this to rest.
Have a great weekend

 
Old 08-21-2004, 03:26 AM   #11
Senior Veteran
(female)
 
NY 1009's Avatar
 
Join Date: Jul 2004
Location: New York, USA
Posts: 896
NY 1009 HB UserNY 1009 HB UserNY 1009 HB User
Re: How common is misdiagnosis?

hi supmom,
there is a special site that is a lymphoma research foundation. the address is:
lymphoma.org
click on patient support on the left side of screen, scroll down to the 3rd choice which is lymphoma message boards, and you'll see that there are many people going through the same thing. Misdiagnosis does happen unfortunetly. but dr.s are only human and not GOD. I understand that they're NOT supposed to make mistakes, but human error happens.
sometimes to get a diagnosis can be grueling for the patient as well as the dr. if you don't feel comfortable with your son's dr. find another one. It's ok to do that.
plus second and third opinions are expected and the dr. won't feel hurt. they shouldn't anyway.
I'm sorry for what you're going through and hope this can be resolved quickly.
sincerely,
lintek

 
Old 08-23-2004, 10:06 PM   #12
Newbie
 
Join Date: Aug 2004
Posts: 5
KimP HB User
Re: How common is misdiagnosis?

Hi Supmom,

I hope things are well. I have been going through a simular experience with my 5 yr old. He too was tested for Mono and EBV, and both came back negative. He's had a CT scan, and an ultrasound, and they discovered his spleen was enlarged (that is why they thought it might have been mono/EBV). From what I understand from my reading is Mono is EBV, the tests are different. I am not sure if you have read about EBV, but there has been evidence that EBV can cause lymphoma. Be persistent if you feel something is wrong. We as mother's know are children best. My husband things I am going overboard, but I just feel like something is off. He goes in on Wednesday to see if his spleen and abdominal lymphs have gone down, and to have his blood re-drawn (he had a very high ALP about 4 weeks ago) I am going to see what happens after the tests. If he is still complaining of stomach and back pains like he has been I am going to take him to a pediatrician for a second opinion.

I had mono when I was in High school, and I was tired all the time. I would try to read from my test books to stay caught up, and would only be able to get through a page before having to take a nap. My friend also had it and she got hepatitis from it. The affects of Mono can last a long time, so that could be why he is still tired.

I hope all goes well Kim

 
Old 08-24-2004, 06:27 PM   #13
Junior Member
 
Join Date: Aug 2004
Posts: 27
supmom810 HB User
Re: How common is misdiagnosis?

Hi Kim,
We were back at the Dr.s again yesterday. School called and he was down there with chest pains and having a hard time breathing while on his back. The Dr. has placed my son on homebound until Sept. 24th. I had to visit the Drs office today to get the paperwork filled out for the school so that they can assign a teacher to him here at home.
I straight out explained to the Dr. that I have been researching his abnormal findings since he became sick in February and that I wasn't trying to self diagnose him, but only to educate myself and trying to understand better what he is going through and that all my research had one thing in common. He said I think I know what you are going to say, but go ahead. I asked if there was a possible chance that my son had some form of lymphoma. He said that is what he thought I was gonna ask, but he wanted it to come from me. He feels, Yes there is a chance and that is why he referred us to a surgeon, to have a biopsy. He said if his current surgeon doesn't feel it is necessary, he thinks I should get a second opinion.
They are getting together all of his tests and reports for me and recommend that I make an appointment with a University Childrens Hospital here in Florida. I am going to try to make an appt. at Shands tomorrow.
You are right, we as moms know when something is wrong. If we don't protect them, then who will? I know I don't have MD or RN after my name, but I KNOW that something is wrong with my son and it's not getting better. I pray and hope everyday that it is not lymphoma. The EBV came back positive, but it showed that he had been exposed to it in the past. I too have read that it has been found in lymphoma and lets say this test is what broke the camels back. I will continue to seek out information and wont' stop until I get a concrete diagnosis on my son.
I hope you also find what is causing your little guy to have problems. I don't know what is worse, not knowing what is wrong or seeing them so sick.
Take care and thank you for your thoughts.

 
Old 08-25-2004, 04:53 AM   #14
Member
 
Join Date: Jun 2004
Posts: 61
momof4luvs2run HB User
Re: How common is misdiagnosis?

Just wanted to let you know I am praying for you and your son. Please keep us informed as to what you find out!

momof4luvs2run

 
Old 08-26-2004, 12:27 PM   #15
Member
(female)
 
Join Date: Sep 2003
Location: Minnesota
Posts: 91
nellie99 HB User
Re: How common is misdiagnosis?

Supmom,

I am sooooo happy to hear that they are sending you to a children's hospital. They deal with this stuff on a daily basis, and I think that is where you are going to get the answers you are seeking. There is definitely something wrong, and even if it ends up being lymphoma, it is better to know and be treated than to suffer physically and mentally without a diagnosis. I wish you, your son, and your family the best. I will be thinking of you all.

Please let us know what you find out!
Nellie

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Misdiagnosis? What do the numbers mean? Marie_85 Diabetes 15 03-20-2006 04:44 PM
Transverse myelitis reoccurance? Multiple sclerosis? or misdiagnosis frantickat Spinal Cord Disorders 1 06-02-2004 03:06 AM
Oversedation and Misdiagnosis John KD C Bipolar Disorder 5 12-02-2003 03:33 AM
Transverse myelitis MS or misdiagnosis? frantickat Urology 0 11-14-2003 01:16 PM
Help with pain??? Transverse myelitis MS or misdiagnosis? frantickat Pain Management 0 11-14-2003 01:14 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Ativan
Benadryl
Morphine
Penicillin Potassium
  Prednisone
Tylenol
Xanax
Zofran
Zoloft




TOP THANKED CONTRIBUTORS



Nassau one (7), ladybud (7), lucy157890 (5), Sandpuff (2), Hodgkins2003 (2), zip452 (2), Upatnight (2), PurpleSaddle (2), worrywartmom39 (2), Gennel (2)

Site Wide Totals

teteri66 (1162), MSJayhawk (990), Apollo123 (890), Titchou (825), janewhite1 (823), Gabriel (757), ladybud (737), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 08:35 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!