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About to get a biopsy and so scared.

elisa73
Posts: 8
Joined: Nov 2017

Hi, 

I'm currently laying on my hospital bed and very scared. 

I have a mass on my back, touching the spine, that has been causing me hell of pains, so now I'm getting to the bottom of it, except that the bottom looks very scary.

They have high suspicions that it's lymphoma. Today I get the biopsy done, but it won't be until Monday or Tuesday for results and treatment options.

I'm trying to be positive and optimist, but the doctor seems convinced that it is. 

So now I have to sit, actually lie down and wait, and try not to die before even knowing what it is, because I'm so sad, scared, nervous...

I have a beautiful daughter who is only 8 years old. Can't leave her just yet... 

Any words of encouragement are appreciated. Thank you.

Elisa

PBL
Posts: 182
Joined: Jul 2016

...Every patient's cardinal virtue.

Hello Elisa,

I am sorry to welcome you in your current situation. However, you will soon know for sure what it is you are facing. Your doctor says he has little doubt, so it seems very likely that you have lymphoma - but only the pathology report can tell you that it is lymphoma indeed.

Assuming it does confirm your doctor's diagnosis - although this is not the most pleasant news, it is often not the worst either. There are all sorts of lymphomas, with widely different characteristics - but there is also a whole arsenal of treatment options for each type of lymphoma, and giant strides are being made every day. Many lymphoma patients now benefit from very efficient therapies that can put them in lifelong remissions in one go.

So, that means - among other things - that you should not give up all hope and give in to panic, and that at this point it is best to avoid trying to figure out what the future holds as you have too little information. It also means that having a little girl to look after will probably require a little planning ahead and turning to a grandparent or trusted friend for a little occasional help.

Finally, and if proof is needed that the above points do make sense, please consider that you have posted on a forum for lymphoma patients - all of whom have jobs, families, etc. Therefore, and since this is not "the afterlife forum" (if you'll allow me some continuing Halloween spirit here), we have all survived the uncomfortable wait for biopsy results and the handwringing over approaching imaging tests, and the sweaty palms and racing hearts at experiencing possible symptoms... not to mention the treatments, of course!

I hope these few words of encouragement can contribute to convince you that even if you do have lymphoma, you stand as good a chance as anyone to make it through the other end with flying colors - with us cheering you on the way.

Wishing you the most benign diagnosis, and looking forward to reading your update.

PBL

elisa73
Posts: 8
Joined: Nov 2017

Thank you so much for the encouraging words! I had the biopsy done and it was scary. A bit painful too. 

I chose not to be sedated, but now I see why the option is there. Maybe because of the placement of the mass, I couldn't feel so much pain but I could tell where he was tugging and some nerve pain shooting around my front ribcage. I did jump in pain with one of the core biopsy. 

Now the area is even more painful than before, but what can I do? 

I will come back to update you with the results next week. I am a big believer in support groups, so I will definitely come here with questions and to vent and cry as needed (or to laugh at the aterlife forum!) 

Thank you again, your words have helped A LOT. 

Elisa

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

I’m sorry you found your self here but please know that there are so many different forms of lymphoma and it does not mean your going to leave your baby girl. I’m a single mom and I was diagnosed in February with Hodgkin’s lymphoma, my daughter just turned 10 so I get the fear and worry. I do hope that everything turns out being no cancer at all but if so happens to be please know there are treatments that can cure you. It’s not easy and no matter how much people tell you to stay positive  very hard to. I myself need another biopsy soon so I feel like I’m back to square one. If you ever need anyone to talk to private message me I’m sending well wishes and happy thoughts to you. 

 

Lacie 

elisa73
Posts: 8
Joined: Nov 2017

Thank you for taking the time to write back to me, it means a lot. 

I try to stay positive, but it's more of a rollercoaster, up and down, easy and hard, I can do this and I can't do this... you know what I mean?

I have to find good ways to cope with it, especially with the pain, which drives me insane. 

I hope you are not back to square one. 

Elisa

dana-mihaela's picture
dana-mihaela
Posts: 39
Joined: Sep 2016

the same as you I had a mass surrounding my lower spine from L5 to S3 that was causing a lot of neurological problems and pain. Mine was around 6cm X 2cm and discovered by an MRI on the lower back. I had the same biopsy as you but I waited a lot for the result that was sent to different labs because was not concludent as what kind of lymphoma it was. In the end it was MZL called marginal zone lymphoma , composed of B cells with slow grow. I can tell you because I know you are in pain that after my first chemo infusion the tumor shrunk and the pain got less and less till it dissapeared. You will be fine and who knows sometimes the doctors get mistake on the diagnostic and there is no lymphoma. 

Good luck,

Dana

elisa73
Posts: 8
Joined: Nov 2017

Mine is upper back. My whole ribcage is in pain as it wraps around my spine. I worry it might go down to the legs. 

The doctor asked me if my legs ever feel numb or if I get the tingling, and I said no because I didn't. But now that he mentioned it, I feel like my legs are getting some nerve involvement and I worry that I might paralize. Imagine the current state of my brain! 

I can't wait for this pain to be gone, because when it's bad I want to crawl out of my skin. Or scream at the top of my lungs! But I can't, because the lungs are inside the ribcage and if I take deep breaths I jump from the pain.

I think I still have a tiny sliver of hope that is not lymphoma, but then all my rational mind slaps me back to reality. But one can hope for a miracle. 

Thank you for your kind reply. I will keep all of you posted. 

Elisa

illead's picture
illead
Posts: 834
Joined: Aug 2012

I'm so sorry for your worries, I know it seems very ominous right now but please know that if it is lymphoma, most are very treatable and even curable.  They all normally respond very well to chemo, even the difficult ones.  The symptoms, which you may be experiencing are usually very dramatic and usually go away with chemo.  So hang in there, you will know soon.  We all hope for the best but if it is lymphoma, it is not a death sentence, so much research is going on.  Please keep us updated.

We care,

Becky

elisa73
Posts: 8
Joined: Nov 2017

I will definitely keep you updated. 

I'm still in the hospital waiting for the results and it's nerve wreaking. 

Your kind words helped.  :)

 

elisa73
Posts: 8
Joined: Nov 2017

I hate this sit and wait game. 

Being in the hospital with so much time in my hands to catch up on things would look like something positive, but it's hard to focus on anything.

I have three books I haven't touched. :(

I go in and out of sad moods and then try to pick myself back up again. Such a torture. 

I need to find some kind of game to play online, I don't feel like watching a movie (I can't focus)

I sleep with one of the stand up comedians on Netflix telling jokes to my subconscious. 

My life is so weird and different right now. 

Ok, I'm done with the blabbering. 

I'll post as soon as I know the results.

illead's picture
illead
Posts: 834
Joined: Aug 2012

I feel so bad for you, you are not in an easy situation, in pain and just basically watching the clock and the slow minutes pass by.  I hope you have good support helping and comforting you.  Please know I will be thinking about you while you wait, I too hope it is soon, hopefully today.  I play candy crush and it can keeps you entertained and time goes by.  It does get frustrating a little but when that happens, I just play good ole solitaire, it's relaxing but you rarely win Wink. You do win at cc however so it is instant accomplishment Undecided.  Hang in there Elisa and feel free to vent anytime, we all understand.

Becky

philr828
Posts: 17
Joined: Nov 2017

Hello Elisa. I would hate to stay in the hospital waiting for results. Good luck in your findings. I go to an ENT specialist Friday and she will let me know where I go from here. Take care and God bless you

 

elisa73
Posts: 8
Joined: Nov 2017

Large Diffuse B Cell Non-Hodgkin

I got the first round of chemo R-CHOP on Wednesday. Feel like crap today, and I hear it's only going to get worse. 

I pray I find the strenght to go through this, because it seems so hard. 

I can't go up and down the stairs without hesitating at every step. 

I am already so much weaker than I was two weeks ago. How can I do 6 rounds of this and the Methotrexate on top of it?

It seems such a torture, almost telling you, if you want to live, you gotta die a little. 

So down.  :(

 

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

I know how you feel and everybody handles chemo differentl, don’t read google because you’ll be terrified. I have major anxiety and I know how hard this is for you especially being a mom! You will be ok and you will pull through! I will keep you in my prayers to get through the hard stuff...youll be ok! Message me any time.

jowith4kids
Posts: 3
Joined: Nov 2017

Hi there i hve just read your thrread,i recently found a lump behinf my ear,i currently go though leg back and chest pains and a strange lump on my head thats been there a year,what other symtoms did you get..God i am so scared,ive lost lots of weight..i sound so stupid but i am sat on the sofa with my dog and baby crying..i think i have lymthnoma. i am sared i really am....ive got doctors at 2.40...

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

Don’t jump the gun and assume the worst! Please make a list of your symptoms and and questions to ask your medical team and take the list to your appointment. Good luck!

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

How do you get through it. You take one step at a time. 

You might have times you take a step or two backwards. That is life. Just stand up and start going forward again, one step at a time.

Befor my chemo started the CT scan showed I had pluerisy in the right lung. That was caused by the lymph system not being able to draw the fluids out of the plueral sac. They Dr ordered a cath to be put in so we could drain it at home, about every 2 - 3 days. 

I did 6 cycles of R-Chop for follicular lymphoma. A week before the second cycle I got what I thought was severe constipation. It turned out to be a perforated bowel. An enlarged lymph node in my abdomen had adhered to my bowels. The first round of R-Chop caused it to shrink enough to tear a hole in the bowel. All went well and my chemo schedule was shifted 3 weeks. 

During the recovery from the bowle surgery it was hard to walk. My gut hurt and I still had the pluerisy. When we went to the hospital to see any of my Drs I would grab a wheelchair and my husband would have to push me around. I didn't know if I would ever feel "normal"

We all have had out challenges fighting our disease and we did it one step at a time. 

Evarista
Posts: 254
Joined: May 2017

Hi Elisa.  So sorry to welcome you to the DLBCL group, but glad to hear that your team put you straight into treatment and that you've already come through one round.  And it may not feel like it right now, but it sounds as though you handled it OK (no issue with the Rituximab?).  That bodes well for the future rounds.

Weakness: the days after completing a round were the one's where I felt the absolute weakest.  After the first round, I couldn't even walk to the bathroom, so the fact that you are going up/down stairs is a major "+" in my opinion!  I found that each between-round recovery took a little longer than the one before, making me feel weaker.  But by the end of my third round, I could walk about a mile without my walker.  So don't assume that it will get worse, just expect that the "bounce-back" may take longer.  I have a terrific champion-spouse who insisted that I get up and move around.  If you can have someone like that around for you, take advantage of him/her. Try to walk as much as you can, even when in-hospital.  This will help with constipation issues too.

In the meantime, try to stay ahead of those things that have the potential to make you feel worse.  If you've been reading here much, you know already that constipation is a biggy.The more you can prevent it, the better. With your doctor's OK, Colace or similar 2X/day starting 2 days before each round and continuing until normalcy returns. High fiber foods, cereals, etc.  Drink water.

Neulasta bone pain:  many people report relief with Claritin (loratadine). Again with your doctor's permission, take a day or two before your shot and continue for a few days. Worked for me.

Mouth/throat issues: ask for an RX for Magic Mouthwash if you feeling your mouth beginning to burn.

Methotrexate: Tylenol or Fiorcet 30 min - 1 hour before the procedure can help prevent headaches.  I was terrified about it, but turned out that the procedures were mostly painless; nowhere near as bad as the bone marrow biopsies. 

We are here if you have questions.  Hang in there and good luck with it.

PBL
Posts: 182
Joined: Jul 2016

Hello Elisa,

I know this is no picnic, but try to remember that we've made it through, and so can you.

DLBCL normally responds very well to treatment and you may expect to be cured after this - so, as unpleasant as it is, it is worthwhile. This is all new to you at this point, so some degree of worry and discouragement is to be expected as you go through your first treatment cycle. Proper management of the most bothersome side effects will however help you feel much less distressed. As already mentioned, with R-CHOP, constipation is a major issue, as it is not only caused by the chemotherapy itself, but worsened by the anti-emetic medication (which you can't forgo!).

I am not sure exactly what you mean about hesitating at each step up or down the stairs (is it weakness in your legs? balance issues?), but any significant new symptom should be reported to your medical team. Not just for whining, but simply because, as patients, we cannot necessarily make sense of important developments - while our doctors can. So, based on my own experience, I would strongly advise you to let your hematologist and neurologist (I assume you have one, considering the location of your tumor...?) know what you are struggling with right now. 

Hang in there, you'll make it!

PBL

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

So often we get an ache or pain and just push it off. When a person has cancer (or is a survivor) every ache or pain makes us wonder "do I need to call my Dr?". 

We just had a situation where the ignoring a problem could have ended a lot worse than what it did. About 3.5 weeks ago I had a bit of a cold that was gone in a couple of days. So a few days later my husband started coughing and feeling tired. Where mine went away quick his didn't. I thought he should go to the ER, he said no. After almost a week he texts me at work to say when I got home from work he wanted to go to the ER. Left work and got him in. Dianosis - congestive heart failure caused by a side effect of a med he was put on a few weeks before. He was in the hospital 4 days. Fortunately his heart is ok. 

 

Nicholas25
Posts: 7
Joined: Jul 2017

WE are in an age of new treatments everyday.  We have much hope...try not to look at the internet.....stastics are not always true!

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