Yes I do agree
I feel like this is good news....agree
Diffuse Large B cell Lymphoma
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission reconfirmed 1st October 2008
Remission reconfirmed 17th June 2009
Remission reconfirmed 7th June 2010
Remission reconfirmed 6th July 2011
NED AND DECLARED CURED on the 2/01/2013
No more scheduled visits to the Prof
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget rule Number 1
Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.
I may not have gone where I intended to go,
but I think I have ended up where I needed to be.
So. I saw the surgeon today...as I figured it would be, it was inconclusive...two samples and they only got blood he said. He said he is not going to do excisional biopsy until my nodes increase in size. So the doctors are worried about so many enlarged nodes. As am I. But the surgeon said that because they haven't grown in a few months he doesn't see suspicion.... should I get a second opinion? Or just wait for these nodes to grow and until then leave well enough alone. Keep in mind that I didn't provoke these investigations....but rather the doctors and radiologist did. So radiologist Says I need nodes removed and biopsies...first doctor wanted to get chest nodes biopsies...second doc ( because 1st doc was away) said no, biopsy easier ones that are more accessible and less invasive... Surgeon says I'm probably fine. Watch and wait some more. Not sure how to feel
Last edited by Mommymeg; 02-01-2017 at 10:24 PM.
Reason: Spelling errors
Meg, the surgeon in a possible lymphoma case has a very limited role to play. Basically, they serve as the technologist who is skilled in procedures necessary for recovering a viable sample which can be used by a pathologist to render a decision, based on numerous microscopic tests, as to whether a given patient does or does not have lymphoma. The surgeon merely needs to retrieve the required sample.
I think a second opinion is worth considering. You have had three doctors indicate that a biopsy would be informative in trying to provide you with a definitive diagnosis. The surgeon should not be standing in the way as I see things.
I think you should contact whichever doctor referred you to the surgeon for biopsy. I would expect that that doctor would have other surgeons in his rolodex. Good luck, once again, and do let us know how you get on.
Thanks for the quick response Kermica. I agree with you and trust your opinions. Just curious...he said that with a blood cancer or lymphoma my nodes would be growing rapidly. Mine grow and then stay...then grow and then stay...but never decrease. I agree with his point that I'm not dying tomorrow due to these nodes...but why not just rule it out. I mean 3 docs have requested excision yet he does (inconclusive) fna then says wait for more growth. He says "yours aren't as big as they seem...you're just skinny" . Well I'm not the one that questioned them in the first place...and xrays/ultrasounds say otherwise.
Originally Posted by Kermica
In your experience here....does slow growth mean 'no lymphoma'?
Absolutely not, Meg. There are two broad groups of lymphomas - aggressive and indolent. Aggressives are exactly that and tend to develop relatively quickly. They also respond to therapy very well and many aggressive lymphomas are, in fact, cured. The indolents tend to grow slowly over time. They are, at this point, still considered incurable though they also respond well to treatment. Indolent patients live with a lifecycle of treatment, usually followed by a period of at least partial remission which is then followed by a return of the lymphoma. It is not unusual for the disease to be somewhat more resistant to available therapies.
does slow growth mean 'no lymphoma'?
So, your surgeon's statement (to me) says that he is not actually familiar with the various types of lymphoma and the nearly innumerable ways in which it can present. I stand by my advice of earlier:
I think you should contact whichever doctor referred you to the surgeon for biopsy. I would expect that that doctor would have other surgeons in his rolodex.
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
Thank you. I'll be contacting my doctor tomorrow. These appointments seem never ending. Thanks so much for your advice.
Well I've been wanting to write but I just feel so discouraged.
I made an appointment with my gp to discuss my surgeon appointment. My gp said that he was suprised my surgeon decided on no excisional biopsy, but also said that my surgeon deals with this type of stuff daily as opposed to himself who comes across this type of issue maybe once a month, so he trusts the surgeons thoughts and we will just ultrasound again in 3 months.
I told my gp that I'm not happy with that and we still have no explanation for my generalized lymphadenopathy, night sweats, weight loss and general fatigue. I said he instigated this and caused major stress and anxiety for me...all to say "ah well, we'll wait some more". He asked to feel my nodes again, then proceeded to print a requisition for ultrasound and mammogram because my nodes along side my breast feel suspicious. Correct me if I'm wrong...but if they feel suspicious then do the damn biopsy! Is a mammogram at my age (34) not a tad dangerous? I feel like he sends me for all of these tests and referrals because he has no clue and is hoping another doctor will answer these questions for him. I'm upset. It could be anything...it could be nothing...but either way it's starting to concern me. Just rule out the scary stuff...
Is there any way to tell from a biopsy if it's an auto immune disorder? The nodes in 3 months (if my history has proven anything) will be a tad bigger or the same... so why have I had literally 20 ultrasounds to tell them this and still no further testing? Always fna...inconclusive...wait and try again. I want to ignore it but as I get older it gets harder to just watch and wait...watch and wait...
I feel sad.
All these docs act concerned but when nothing jumps out in front of their face they just wanna wait.
Wait for what? If it's nothing then I've lost nothing but if it's something then I've lost time.
I feel so lost. Maybe I just say screw it. I'll know when I know.
Like even if it's autoimmune chances are there will be a treatment of some sort to help with some symptoms...
Thanks for your time. I hope you all are doing alright <3