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New here, possible lymfoma, waiting for biopsy...

Kate611's picture
Kate611
Posts: 7
Joined: Jun 2015

Hello everyone! Firstly I want to apologize for my english... I'm from the Czech republic, so I'm not a native speaker, but I'll try...

I know that you must be fed up with the "possible lymphoma" posts but I just can't help it. This is the first website, where people are acutually very kind and not just barking on those who are not diagnosed yet. I appreciate it very much a want to thank you for your help and support to those people.

Well, I'll try to explain my problems as short as I can (just to clarify, I'm 20 years old, otherwise healty university student). It started 3 or 4 months ago with, what I thought, was a nasty virus or bacteria in my throat... I went to my GP and she prescribed me some antibiotics for 10 days. It didn't help... After the treatment, I found out that I have three pretty big lymph nodes at the upper left side of my neck, close to the artery and temperature 37 - 37,3. Of course, I said to myself that I just went through an infection of some sort, so no big deal, the will go down eventually. But they didn't. So I went to my GP again, she said that there is nothing wrong and there are no lymph nodes - what the hell?! The nodes were really huge, I assume that she saw a 20 YO student and figured - that is just a healthy woman, there is no chance of something serious. So I went to my otorhinolaryngologist (the throat doctor). He did some basic bloodwork, cultivation from my throat and ordered some test for common viral infections, such as EBV, CMV and herpes. Everything came back normal, just positive antibodies, yet those against cytomegalovirus were somehow high but not in the "IgA" - active infection. The laboratory wrote down it could be reactivated or something like that. He sent me to chest X-ray, ultrasound of my abdomen and my neck lymph nodes. X-ray was clear, UZ of my belly too (no enlarged spleen, liver, no masses) and the nodes were described as bening-looking, probably reactive but big. All three around 3 centimeters, very close to each other but not in joined. That was it... The doc once again checked my neck and said that I should gargle salt water and wait, that within a month, the nodes will be gone. They were still there. Once again - GP, she yelled at me that I'm mentally ill so I left and got my new, amazing GP, who sent me to immunology and hematology. Immunology bloodwork showed no problem with my imunity, just supsected infection of chlamydia pneumoniae and again some weird high antibodies for lyme disease but again, no sign of active infection, even though the laboratory said it can be chronic infection. My immunologist scared the hell out of me, when se said that my higher temperature and the big nodes are not normal and it could be lymphoma... well, thanks doc, of course, I googled... Well, hematologist found slightly positive Staphylococus aureus + and Heamophilus ++. She felt my lymph nodes, said they are soft, two almond-like shaped and one like a bean. A bit hard but movable... I'm relatively small and a bit skinny, so the nodes can be seen. She said that because of the positive serology, it will be good to treat them with ATB once again... this time pretty strong and for 2 weeks. I forgot to mention that my GP sent me to the surgeon to remove my node for histology. The day I visited hematology was the day I should have one of my nodes biopsied. But the hematologist said that we should firstly try the ATB - that it would be afterwards easier for the pathologist to find something in the node... but yes, If they wouldn't go down, there would be something truly wrong... So, here I'm now. Tomorrow my last ATB pills and routine hematology. The nodes are still the same size, the temperatures all the same 37 - 37,3... One week left to my biopsy. I'm scared, really a lot, because the immunologist said that IT IS NOT NORMAL TO HAVE THE CONSTANT HIGH TEMPERATURE AND NODES THAT BIG after 3 or 4 months...She actually looked at me like I have the diagnosis already. I have nobody to talk to about it... don't get me wrong I have a wonderful family, but my mum is convinced that when my bloodwork is fine = I'm fine. I have to talk about this with someone and I need to feel some support because the docs started to be really worried... I don't want to bother my boyfriend with it, because we know eachother for 6 months now and 3 of them I'm not able to function normally - no sport, no bike, nothing - "Stay at home and rest, don't do anything because of the tepmerature", as my doc have said. I know, there is a lot to be concidered before cancer but the docs just ruled out everything and said the high antibodies don't seem like they are making the mess... I know, I shouldn't be anxious before getting the results of the biopsy done but the waiting is killing me and the fake smiling to everyone is just sucking the energy out of me... I just need to talk about this with you guys, since you are so nice to those who come here seeking for help... I have no other symptoms, no itching, no rash, no night sweats, no dramatic fatigue, just the higher temperatures and big not-painful nodes. I've lost about 2 - 3 kg in the last month but it can be stress-related I guess. I had a little higher cholesterol in my blood so I changed my diet a bit to "healthier" so I still assume it can be because of it... I have two or three mall lymph nodes in my axillas, but they are no bigger than 1 cm (I guess) so I don't concider them as "bad".

I know it sounds like an infection really, but you should see the faces of my docs... they look concerned and im anxious about it. The waiting is really killing me...!

Also, I know that a lot of people don't even bother to tell you the results after their fear of cancer and waiting for results, but I will... good news or bad ones - it could help those undiagnosed to either be relieved a bit or to push the docs for further eximination.

Thanks for ANY reply... I'll let you know how the hematology visit tomorrow went, if anyone is interested.

Be safe and strong!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3380
Joined: May 2012

 

Welcome, Kate. I am sorry you have these worries to grapple with at the young age of 20.

My ancestry is Czech.  My great-grandfather came to the US in around 1860, eventually setteling in the "Midwest" US. There is a large Czech population in the US states of Kansas, Oklahoma, etc, today. Virtually all became farmers.  He departed a village outside Phara (Prague). Today the village is just off of the main highway that connects Prague to Plzen.  His home still stands in the village, I am told by a cousin, who visited in the 1990s.  Our last name is one of the most common in the Czech Republic, but nearly unheard of in the US; an ancestry site says that there are about 400 of us in the US today. Novotny is another common Czech name here, and my gandfateher in fact married a Novotny. My own grandmother was a Fischer, which brought a Bavarian element into the picture...she could cuss in German, which was delightful.  I know NO (zero) Czech myself.

Your lymphoma worries are legitimate.  You mention having had a variety of ultrasounds and Xrays, along with blood work, but I did not see a CT mentioned.  The CT is BEST in detecting lymphoma, so if you need further testing, request one, if they are available where you are. XRays and ultrasound are usually of limited vaule in seeing nodes.

Please do let us know what your results are.  I am hoping that all shows negative for lymphoma.

By the way: Your English is excellent.  Having taught writing for some time, I would recommend that you review "paragraph breaks," however.

You also have a delightful command of science for a person your age -- so refreshing !  Americans are mostly "monolingual" -- English only.  Well, except for a few foreign words, which mostly refer to foods...an American who can say frappe'  correctly, for instance, views themself as a native Parisian. 

max

illead's picture
illead
Posts: 853
Joined: Aug 2012

     I also want to welcome you to the forum and thank you for the kind things you have said about us.  We try.  It has been a little less lately, as there has not been too much going on and we get busy.  I knew Max would write, he is like our resident doctor Wink.  I agree with everything he says and also very sorry you have these worries.  Please know that lymphoma is very treatable and only in rare cases is it hard to deal with.  We will be waiting to hear and really hope it is good news, that is what we like.

     My husband Bill and I were in Prague in '06.  What a beautiful town.  We managed to find a famous beer hall, they give you 2 mugs of beer and I have forgotten what it is, but there was a certain signal, something like putting 2 fingers on your tab to order another round.  Anyway, we enjoyed our visit there.  We went to a big fancy hotel for dessert one day in another town that also has a glass factory, the scenery was incredible.

I will be thinking about you tomorrow,

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3380
Joined: May 2012

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

Dear Kate,

When my daughter was born she was ill, test after test I tortured myself until results were in..... I understand the anxiety and worry awaiting any news.  If I learned one thing from that experience and my own diagnosis is not to worry until you have too.  Breath freely and await what I hope is going to be some other reason for your symptoms.  It's natural to be afraid, I was but I wasn't going to allow myself to go there until I had too.  I'm glad I did, it bought me sometime and a bit of peace.

Dont be afraid to post or share your fears, we've all been there.  Undoubtedly we can listen and support you along the way.  It could be something else.  Recently a dear friend went through hell over a horrid infected sublingual lymph node with similar systems.

Good luck tomorrow!

 

Anonymous user (not verified)

your concerns are very legitimate, but that does not mean you have lymphoma. The antibiotics would not work on a virus or on advanced lyme disese. Lyme disease is epidemic here where I live and several friends and relatives have contracted it. It is a very serious illness.  I would say get a copy of the report from your lymph node biopsy . Its such a shame that you are having to struggle with the doctors. What you have going for you is your intelligence and willingness to push for answers. Good luck.

 

i will throw in my bit about the Czech Republic. In the early days of Soviet Collapse I was sent to Jena in Eastern Germany. That is close to your country. I wanted to go visit but frankly was a bit anxious about crossing over and my rental car specifically said I could not take it to Czech Republic. Being a natural born rule breaker I went anyway. The border guards gave me a bit of a hard time but once there the Czech people treated me very well! I loved it. It was actually more difficult getting back into Germany than crossing to Czech territory. The German guards were real jerks and the crossing took several hours.

Kate611's picture
Kate611
Posts: 7
Joined: Jun 2015

Once again, hi guys!

I'm so happy to hear about your experience with my country. I'm amazed that so many of you actually visited Czech republic (many of you - like, what is the probability of meeting someone right here at this forum?). Yes, beer is famous in the CR but for example, I don't drink it... everybody is always totally surprised because "You are a czech girl who doesn't like beer?!" It really is somehow supernatural to them :-)

The thing with my english and terminology... I'm studying biology (combined with geography), so let's say I know a little something about health issues and how it works (but that is maybe a disadvatange in this case). I'm trying to learn as many languages as possible, I find it interesting and it keeps my mind busy in another way than just science (in school). I'm studying english for 13 years now, also spanish for 5 years and I've just started learning russian. Even though it's the closest one to czech, I find it very difficult but I guess I struggle a bit every time at the beginning...

But, because of my health problems, I've decided that I'll apply for med school next year. I don't like the access of the GPs to those who really know that something is wrong but they can only see negative results for everything, therefore there just can't be a problem. I want to change that, be different, be more caring and when somebody is not well, then I'll just keep looking for the problem... The anxiety is crazy and it can be totally devastating. And who knows better than the one with personal experience.

Well, the hematology (what is the correct spelling? haematology?) check-up went fine. There are about 5 doctors every day so you don't know who is going to examing you. Fortunately, I was given an amazing doc. He asked if he can be totally honest with me. I said "of course, that's what I'm looking for...". He said that the thing with negative serology and the nodes which didn't go away even after a powerful antibiotics is kinda playing against me. But he still said that most of the removed nodes came back bening (he scared me a bit when he said that the one out of the three nodes I have and the one which is going to be removed can be actually benign and the problem would be in another but he said that he is 90% positive that if there is a problem, it can be seen in every node.)

But on the other hand, my throat is still a bit red, my tonsils are a little bit bigger and he believes that it could be some nasty virus-infection or post viral syndrome... He gave me his telephone number to call just ONE WEEK after the biopsy, that he will be able to get the "first look" results and if they are benign, I'll wait the other two weeks for official results. That is - I guess - good, but I'm still worried... I can't imagine recieving bad news, I guess I would collapse. I know that lymphomas are the best to treat but still, of course, I don't want to be cancer patient at my age (and yeah, I know that my age is plus for me). I'm horrified of losing my hair. I'm a natural redhead so my hair is like my personal treasure... And yes, I have problems dealing with nausea but I guess, who doesn't... But let's stay positive.

The doc said he believes it will turn out just fine, we shaked our hands (you see, that is the kind of doctor I want to become!) and I left to see my otorhinolaryngologist because I was told that it would be good to see other opinion and that this doctor is going to help me with my painful tonsils which are acting up again (I have this on and off for the past month). I went there, he looked into my mouth and said it still looks like a viral infection to him or again - post viral syndrome. Sometimes, he said, it can take a lot of time until the infection is cleared up completely. He felt my nodes, said that they are just too soft, very movable and have the right shape (not round) and that when dealing with lymphoma, they just "feel different". But he agrees with the biopsy. He confessed that he wouldn't send me for biopsy himself even though the nodes are big and I have them for a long period of time now. He is a very skilled and friendly doc so that made me left his office with a smile on my face. I HOPE IT'S VIRAL.

Well, that sums up this day. Biopsy will be next monday. I would be very thankful if you can write some more personal stories (doesn't have to be necessarily about health, it was very refreshing to read you stories about the CR). I have to keep my mind busy. I have an exam comming up on monday before the biopsy too, so I'll try to focus on studying.

Once again thank you so much for your support, you guys are amazing and it's really helping me to have someone to talk to about my issues!!! Best of luck to all of you! I would say "God bless" but I'm not a christian and yes, I was tempted to actually start praying to God because he CAN help somehow. I believe there is something metaphysical even though I'm supposed to believe in evolution. But I would feel like a coward to ask God for help because there are some troubles right now. I don't think it's right to convert at this circumstances.

Well have a nice day, all of you and I'm looking for some stories! :-)

Kate

lindary's picture
lindary
Posts: 684
Joined: Mar 2015

Hi Kate,

Your English is fine. I work with empoyees and consultants who come from other countries. I wish their English was half as good as yours.

I don't know what is worse. Having to take and wait for all of the test you have had or what I went through. I saw my GP and mentioned a couple of problems. She feels my abdomen and within 3 weeks I have had several test, a biopsy on a "mass" in the abdomen and my first visit with my oncologist. I was in my first chemo before the dust settled in my head. it still seems sureal. 

I do hope for you the test come back that it is not cancer. I would love to hear of someone with your personal experience with the medical profession become a Dr and use that experience to help their patients get the help and answers they need. 

My heritage, not Czech. Polish, German & Engish. 

Good luck Kate.

Kate611's picture
Kate611
Posts: 7
Joined: Jun 2015

Oh, I forgot... The thing about the CT scan... Here in the CR, you are not given a CT scan until they rule out everything else or you have a diagnosis which needs CT scan. Maybe they are willing to do a CT scan or MRI to older people but for us, young adults, those tests are the last thing... I was actually surprised that it's way more common in the US, for example even in "just to be sure" cases. That's great. But America is generally a bit ahead in this :-) So if I would ask for a CT scan, the answer would be probably negative. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3380
Joined: May 2012

Kate,

So far, so good with your dotor appt. I would almost rather not go to the doctor than be told that I am'probably' ok, but that is just me. It is undoubtedly better than being told you're 'probably' very  sick.

I'll  say a little prayer for you.  Sad, that the forced, compulsory athiesm in the Soviet Bloc was so successful in the Czech Republic, especially given that it boarders Poland, one of the most religious countries on earth.

Hoping for good news for you next week.  Ps -- both spellings of 'hematology' were correct.  The British add the extra 'e,' Americans do not.  This is true of many medical and academic words.

max 

 

 

 

Anonymous user (not verified)

that back in the USSR days it was not the Czech Republic, it was Czechoslovakia. That country was made up artificially of different ethnic and religious groups - Catholic, Eastern Orthodox and Muslim. It dissolved instantly with the demise of the USSR. The Commie bloc had always preached to young people that religion was the cause of much of the world's strife. My response is that Atheism and communism are both religions too and cause more than their share of problems in the world. My neighbor has an adopted daughter who came from Prague as a high school exchange student, before the fall. She was very religious (still is, lives in Florida now) and to top it all she was a protestant. Unheard of in that part of the world. She was frightened to return so her art teacher adopted her at age 17. I am still on the fence with religion. I am a scientist (physics) and can see some possibilities for life , or at least awareness, before and after death but am yet to be convinced. Biggest issue I have is that twice i have been very near death and both times there was nothing. Not even a void. Nothing. Like time stopped when i got hurt and started back when i became conscious again - with nothing in between. Comforting in a way - no fire and brimstone. You don't have to be religious to be a good person. Thats why Judaism says "there is always a place in heaven for the righteous gentile". Believing is not necessary in that faith.

I have been asked to attend a meeting in Serbia in September where this will be a topic. I doubt I can go. Two new grandchildren on the way here!

CSN - I realize this is not a religious forum. Delete this message with no hard feelings if you think it is inappropriate for this venue.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3380
Joined: May 2012

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Kate611's picture
Kate611
Posts: 7
Joined: Jun 2015

Well, today the biggest node started to hurt when I touch it... The skin above the node is a bit warmer and the pain sometimes reaches my jaw... Is a slight pain a good sign or bad? This happened before, maybe once and the pain then went away. I guess it's the same. The node stays the same, still bean shaped, soft, I guess it's not bigger. I have no idea why does it hurt. I'm trying not to touch it but it's so hard not to! I guess I'm awaiting the moment when they will be gone or smaller. 

I started to panic last night, what if it's not a lymphoma but some throat and neck cancer? That would be even worse I guess... :-( 

I have no cancer in my family so far (luckily) but still... Someone always have to be first. I know I'm probably paranoid but the waiting is really driving me crazy. Sorry for this comment but just have to let it out :-( I'm just too young to bear all this by myself... 

Hope tou guys are doing better than me.

 

Desperate Kate

Kate611's picture
Kate611
Posts: 7
Joined: Jun 2015

Hi guys,

so on Monday, I went to the surgeon who removed my lymph node under local anesthesia. The procedure went fine, no problems, although the lymph node was kinda deep. Otherwise no bleeding etc. I was given penicilin to be sure that the wound will not become inflamed and I'm waiting for the results. To be honest, I think I wouldn't be able to call the number because I'm terrified about recieving bad news. But I can't do anything about it so I guess I have no choice.

 

The scar is OK, looks thin and good, no bruising no swelling, the pain is just very mild.

 

I'll let you know as soon as the results are out.

 

Take care!

 

K.

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

Let's hope and even pray it's nothing.

We all have a story, some stories are better than others but none come without fear, sorrow and dread.  One thing is for sure you're not alone.  You have the support of this wonderful group and I hope your family and friends as well.

It may not seem like much but it can be tremendous.  Keep us posted....

 

 

Kate611's picture
Kate611
Posts: 7
Joined: Jun 2015

The results are not back yet... Have to wait one more week! 

 

Btw. did any of you experience tender lump under the neck biopsy incision?

 

I asked my surgeon about it and he said he doesn't know and that he did what he was told to do and now he'll just keep an eye on how the scar is going to heal.

 

Well, great.

illead's picture
illead
Posts: 853
Joined: Aug 2012

So sorry you are having to wait so long.  I know how frustrating it is.  I think and hope it is not going to be anything serious but I know it is still a worry for you.

Hang in there,

Becky

Kate611's picture
Kate611
Posts: 7
Joined: Jun 2015

Hello guys,

 

so I got my results back and it's BENIGN :-)

 

They don't really know what caused the lymph node to swell so much but it's reactive and in some aspects similar to toxoplasmosis (but that was all negative in my blood so maybe another parasite?). I'm happy in a way, that it's fine but I can imagine that even being diagnosed with lymphoma must be a relief in a way - you finally know what is wrong with you and you can strat treatment (sure, it's still cancer and I have no idea how it's like to recieve that news but still...). I think that a long way is ahead of me, trying to find out what is this mysterious disease I have...

 

Just to be sure, I have 2 more big nodes on my neck, only the biggest one was removed. If that one is clear, it means that all of them are and I should not worry anymore or do I have to still keep and eye on those two and watch the size? I don't think they are going back to normal and they will remain enlarged but maybe after few months... who knows?

 

Anyway, thank you so much for your support during this journey, you've been incredibly helpful and you were holding me all the time... I wish all of you all the best in the world, keep fighting and LIVING as much as possible! I'm pleased that I could meet all of you but I still hope I would not have any more reason to write to you (I'm sure you understand... no offence)

 

So take care, all of you and I'll check it out here once in a while to see how are you doing (via reading some posts :-) )

 

Take care!

Kate

illead's picture
illead
Posts: 853
Joined: Aug 2012

That is the kind of news we like to hear Kate.  Know it is a big relief for you and you can now get on with your life.  It was nice to meet you too, and now you have a little glimmer of another side of life.  With that knowledge you can help others with a greater understanding of how we are all affected by change.  Come back anytime, and we all hope it is only to say Hi. Wink

Becky

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