Necrotic Cells: Possible Lymphoma

I see your post sitting here all lonely with no replies, so I wanted to respond. I, however, cannot help or give you any advice. I can't advise you medically and I sure can't be of any help with hospitals, doctors, and costs, here in the U.S. I can tell you that my medical expenses, even with very excellent private insurance, are extremely expensive. I live in North Carolina and I think my doctor and my hospital are excellent.

Good luck to you and your family member. May you all make the best decisions for the best outcome.

Rocquie

Sounds somewhat like my case. I had a tumor in the left side of my chest, totally involving one lung and the heart area. Mine also was quite large and seemed to have grown quite rapidly. I too showed that most of my tumor was only necrotic cells, though it kept growing and showed much cell activity on a PET scan. When they did the needle biopsy for me, they were careful to go into the area that still seemed to be growing and not the center where it seemed to be mostly necrotic. My guess is that they probably didn't hit it at the right place with the needle biopsy. And needle biopsies can be iffy because they get only a very small sample of tissue from a very small area. Sometimes, they just don't hit the right area. I was thankful that I was referred to a specialist who was known to have very good success with getting the needed tissue in a needle biopsy. They weren't sure if they could get enough of the tissue they needed to prove conclusively whether or not I had cancer, and if the needle biopsy wouldn't have been successful, they were planning on doing a chest surgery. But yes, it would have been risky, even the needle biopsy was risky, because of the proximity to vital areas.

One question I do have: is she having any symptoms? By the time my tumor was quite large I was feeling awful: a bad cough, constant fever, out of breath, exhausted, weak, no longer eating, extreme tachycardia (high pulse). If she does, then I would say that it is extremely likely to be lymphoma. I would say to open up the chest in a surgery sounds like the next logical option since the needle biopsy wasn't successful. And the faster you can move the better, especially if she is not well anymore.

After the needle biopsy proved that I had large B cell lymphoma, I went on to have 6 chemo treatments, called R-CHOP. My treatments ended in September 2012, and I am currently in a stable condition (cancer not proven to be gone, but certainly not growing), and absolutely healthy! I feel the best I have felt in a long time, maybe that I have ever felt.

As to coming to the US, it all depends what doctors you can find where you are. I would say do your research, and don't be afraid to push the doctors to move on with the case. Sometimes that is what it takes.

As to cost, my total costs so far have been $150,000 at least and counting. I did not pay nearly all of it. The hospital offered high discounts since I am self pay and my church pitched in with the rest.

I went in for the needle biopsy, dead tissue went in for the scope still dead tissue!  I won't be cut open they know its cancer . The mass is compressing on my vocal cords I have been to the hospital 4 days this week Can't they treat my cancer with out the biopsy?  I figure if they have done 2 different biopsy's and the tissue is dead in both ! It must be to far gone . Have an appointment with oncologist the 14th I pray he can do something 

Seems 'm always odd man out on my treatments.  I was diagnosed in January 2008 with a very rare form of B cell lymphoma.  Very similar to that which solid organ transplant patients get.  Although B cell it was T cell rich.  I had path reports done from 3 major NIH hospitals and we went with Immuno-compromised NHL.  I was taken off my immune suppressing drugs for RA and treated for 1 1/2 years with Rituxin only, even though it was an aggressive lymphoma.  After 6 months I was in remission.  After 1 1/2 years I relapsed.  They could not reach the cancerous area with out going through my liver, which I would not allow.  An interventional radiology biopsey was done at Stanford showing it was not T cell but unsure on the B cell.  Actually Stanford lost the slides between the radiologist and the path lab.  It was decided to treat with 6 cycles of RCHOP as needed to be treated now. Note, without a differential diagnosis.  After 2 cycles I was in remission and to date remain in remission.  Prior to the RCHOP my PET/CT showed SUV of 36 and 28, so these 2 nodes were very hot.  First time I didn't have a PET until after my first round of Rituxan.  My nodes ranged from 12 to 18 with too many nodes to count.  Always wonder just how hot they were.

Just wanted to share.  Glock, press your doctors on treatment and why they feel it is cancer.  Best of luck to you.  Please let us know what you do.

Leslie

lrclum said:

Biopsy

I had a biopsy and agree with Sandy Ray, it's considered necessary in order to know what type of treatment to use. Mine was a follicular lympoma which had turned aggressive and I had 6 cycles of R-CHOP and am now in remission. A good source of information, if you a ready for reading (I was not until 6 months in, I was too afraid) is the Lymphoma Research Foundation with a great website: Lymphoma.org   Best wishes.

Irclum,

Like you I was diagnosed with follicular lyphoma. Since it cause my thyroid to be off, pluerisy in the right lung and a large node in the abdomin the Drs decided to treat it as an agressive form. Six cycles of R-Chop did not put it in remission so I had to do 3 cycles of RICE. Plan was to follow it with a stem cell transplant. After several months of going back and forth about the SCT it was decided to put it on hold. Then 6 months after the RICE was done and I was still NED, they decided to cancel the SCT. right now I am 18 months in remission. 

I agree that LRF is a fantastic group. They are located not far from where I live and one of the Oncologist I worked with is part of that group. They have aamzing town hall meeting and forums with great speakers.