Ack My biopsy is tomorrow!

craftymama4 · Regular Joined: 23 Aug 2009 Posts: 20

My results came back and he said that it is NOT lymphoma Very Happy

! But for some reason I just don't feel relieved! He said he doesn't know what it is. And said that if my other ones get bigger to come back in and they will have to remove another lymph node.
I do have some weird rash on my face that I have had on and off for 2 years and weird bumps in my scalp. So he is sending me back to dermatology. I guess I feel like I don't have any answers for my recent weight loss and fatigue, and enlarged lymph nodes. I don't know where to go from here. My thyroid is enlarged, could there be something with that?
Does anyone know if it were a different kind of cancer, like skin cancer or thyroid cancer, would it show up in my lymph node biopsy?
And could my biopsy be neg for lymphoma, but my other lymph nodes continue to grow and I have to get another one removed and it be lymphoma?

nur311 · Regular Joined: 06 Sep 2009 Posts: 22 Location: non

i am glad your biopcy result came clear.i am very happy for you
_________________
i have swollen lymph nodes over 5 month. i am really scared. i think i may have lymphoma

ChemoMan · Posted: Wed Sep 09, 2009 4:17 pm Post subject: Re: Ack My biopsy is tomorrow!

Hi craftymama4

There are over 360 conditions that can cause swollen lymph nodes. Most common are infections including skin infections. Autoimmune diseases like Lupus can also causes nodes to swell. While sometimes biopsy results can be wrong this is unlikely.

Your doctor is still taking this seriously and is doing the right thing in sending you to a dermatologist. Try not to worry and let the doctors find out what is wrong. You will need patience as this could take some time.

Good luck I hope you get some answers soon.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

aisha1 · Posted: Wed Sep 09, 2009 4:29 pm Post subject: Re: Ack My biopsy is tomorrow!

ChemoMan would be the best person to answer your questions, but thinking from common sense, I doubt that one node is going to be clear, yet the other has lymphoma.

I'm sure that they will be on the case of what is causing your symptoms, and I hope you find out what is wrong. Your weight loss and fatigue could be related to the thyroid.

On the upside............

YOU DON'T HAVE LYMPHOMA! That is great news!!!!!

You can at least relax for the time being. You made a good choice getting it seen to, and that was a step in the right direction. I'm so happy for you and your kids, that you don't have to go through this whole chemo business.

Well done. Well done. xxx
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

craftymama4 · Regular Joined: 23 Aug 2009 Posts: 20

So I went into the dermatologist, since I have had this painful rash on my face and scalp. He looked through my biopsy results from my lymph node and said that it showed a high amount of histocytes. He think that I may histiocytosis. Wondering why the head and neck surgeon didnt mention that to me?
I don't know much about this. But getting closer to hopefully feeling better!

ChemoMan · Posted: Sat Sep 12, 2009 7:07 pm Post subject: Re: Ack My biopsy is tomorrow!

Hi craftymama4

There are hundreds of causes of enlarged nodes as I mentioned before. The surgeon's field is surgery, it is highly specialized and his energies would have been devoted to that over most of his adult life. The dermatologist would have devoted most of his adult life to the study of dermatology, which is also highly specialized. The surgeon sent you to the dermatologist because he has no in depth knowledge of skin disorders and could not diagnose you. So the answer to your question is basically the surgeon did not know what could have been causing this as he does not have to knowledge base to do this. I hope that makes some sense?

Good luck craftymama4 I hope they get on top of your issues soon and that whatever you have will be treated successfully soon.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

craftymama4 · Regular Joined: 23 Aug 2009 Posts: 20

That does make sense! Thanks. I guess it is interesting because it is similar to lymphoma, but it is not cancer.

craftymama4 · Regular Joined: 23 Aug 2009 Posts: 20

I was wondering if any of you have heard of histiocytosis? From what I read that there is a T Cell lymphoma which is histiocytosis? I am waiting for my doctor to send me the written results from the biopsy. I am hoping that they looked at the abnormal amounts of histiocytes to see what cells or whatever are in there.
I felt a relief that they said I didn't have lymphoma so that I wouldn't have to go through chemotherapy. But, looks like the treatment for this histiocytosis is chemotherapy as well. : (

KCLee · New User Joined: 01 Sep 2009 Posts: 5

I'm glad to hear your biopsy went well, CraftyMama... I have my next f/u appt on Friday after my own biopsy, and am supposed to get more report results at that time- 1st one was ok per my 1st f/u but he was still waiting for 2 more that he said would take a couple of weeks.

I hope that you get some concrete answers from the dermatologist- I completely understand your want and desire to have a definitive diagnosis as to what is the problem. I feel the same way- I'll be very glad to get an "all clear" but in the same time I want to know what the problem really is.

Please keep posting updates... I'll be "lurking" and cheering you on! Smile

BTW- do you still have any type of swelling or a knot near the incision site? I have a knot above my neck incision that is like egg-shaped, and it will have been 3 wks since the biopsy on tomorrow. It doesn't seem like it's going down in size anymore, so I plan on asking the ENT about it at my appt. maybe it's the muscles or something?

craftymama4 · Regular Joined: 23 Aug 2009 Posts: 20

I dont have any kind of knot by my incision. But my muscle right by there seems really tight.

I did want to give my Final update Very Happy

especially for others who may encounter this rare disease. I am Finally diagnosed with LCH, langerhans cell histiocytosis, which has affected my lymph nodes, my thyroid, my bones, my skin and my adrenal glands. This disease is very rare especially in adults. It is similar to cancer where certain white blood cells, histiocytes start growing out of control and attack the body and the immune system. I am going to the oncologist and will be starting chemo and prednisone.
Because it is so rare, the pathologist didn't do the special stain for LCH and thankfully my dermatologist was able to get him to do so on my lymph node biopsy.

Good luck to all of you and God Bless!

aisha1 · Posted: Wed Sep 23, 2009 3:03 am Post subject: Re: Ack My biopsy is tomorrow!

What a rollercoaster you've been on. Good job your dermatologist was on to it! I know it's a hard thing when you are diagnosed, and it feels very odd to know that all of these things need some sort of radical treatment.

I've never heard of this before, but from what you're saying, it makes sense. T cell lymphoma's aren't that common, and yours seems like it's quite uncommon as well, as your doctors will have told you.

Anyway, now your fight begins. I don't know what the regimen of chemo you will have is called, but you should get back to us, also with the length of time you will have it. I'm sure there must be someone here who has gone through similar. They may be able to help you.

ChemoMan might have heard of this diagnosis before, but in any case, I'm sure others reading will help out.

Get someone to help you with the kids as well.

Sorry to hear of your diagnosis but you can fight and be better soon. I'm sure of it.

Aisha.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

aisha1 · Posted: Wed Sep 23, 2009 3:06 am Post subject: Re: Ack My biopsy is tomorrow!

WHY OH WHY did I put an apostrophe in "lymphoma's"????? Chemo brain is just another thing you will start to get used to! Laughing

_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan · Posted: Wed Sep 23, 2009 3:13 am Post subject: Re: Ack My biopsy is tomorrow!

Hi craftymama4

below is a link to a video series on this disease on youtube. I hope you find it useful:

http://www.youtube.com/watch?v=KkBRqZS8nfM
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

joepet · Senior User Joined: 18 Dec 2008 Posts: 288 Location: Japan

Hi craftymama4

I'm so sorry that the initial joy of finding no cancer had to be tempered by this news. If you decide you'd like to continue keeping us updated on your condition and treatment, I'm sure it would be of great benefit to someone else someday, especially given that the condition is so rare and so similar to cancer.

Good luck with your treatments and ultimate recovery!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

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