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Necrotic Cells: Possible Lymphoma

cancerwar
Posts: 1
Joined: May 2013

A family member in India has a fairly large tumor in her left upper chest area. The tumor grew within 3-4 months and has reached her neck area. Her PET scan shows high possibility of cancer. She went through needle biopsy twice and they only found necrotic cells.

 

Doctors say:

- It is very likely she has non-hodgkins lymphoma because of its rapid growth and dying cells (and also due to PET scan results).

- Next step will be to do open biopsy and remove a chunk to find out what kind of cells are there in the tumor. However, this surgery is risky due to the location of the tumor - close to lungs and areries.

- If it is a form of cancer, they will start the treatement.

- If it is not cancer, they will need to remove the tumor (or at least most of it). But, this is very risky.

 

My questions are:

- If you have encountered similar sittuation, I would like to hear what happened and how to proceed.

- Does it make sense to bring the patient to US for treatment.

- If yes, which hospital? Doctor?

- Any guesses on the cost involved.

 

Thanks

 

Rocquie's picture
Rocquie
Posts: 762
Joined: Mar 2013

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

 

illead's picture
illead
Posts: 726
Joined: Aug 2012

I have also been meaning to answer you.  Along with Rocquie, this is not the lymphoma that my husband has and we are unfamiliar with it.  I would suggest that you not come to the US for treatment as without insurance it is unreasonable.  My husband's chemo treatments would have cost us over $60,000 each time and he had 6 treatments and is still having maintenance infusions.  Actually, many people in the US opt to go to India for medical needs.  I am not sure about cancer, but we have a friend who went there for heart surgery.  We have many Indian people in our city, (mostly Punjabi), so we are very familiar with them.  Many of our doctprs are Indian and we trust them implicitly.  My husband's first oncologist was Indian and we loved him.  He ended up leaving our cancer center however to work elsewhere.  The Indian children here excel in school and also many educated professionals return to India.  So I am thinking that you probably have just as good of doctors and hopefully medicine there.  We certainly wish the very best for you.  We know that cancer is very scary and changes your life (we have all been there).  Please know though that many lymphomas are curable or treatable and that lymphoma is being highly researched.  Hope we have been an encouragement to you.  Bill & Becky

fullyloved
Posts: 39
Joined: Oct 2012

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.

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Sorry to hear about your concerns, most common symptoms with lymphoma are, swollen and painless lymphnodes, night sweats, rashes and low grade fevers as well as weight loss. She needs to have a a biopsy done of a suspected lymphnode and a CT/Pet scan. Blood work is also important. Get a diagnosis and if in fact is cancer then a good hospital that works with international patients is MD Andersen cancer center in Houston TX. God bless.  

Glock's picture
Glock
Posts: 1
Joined: Jun 2017

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 

 

Sandy Ray's picture
Sandy Ray
Posts: 65
Joined: May 2017

I know with Lymphoma a biopsy for exact type of cancer is mandatory. I had 2 very rare types and until the last 8 or 9 years most people did not survive the one type because it was misdiagnosed. That is because the type Chemo varies by the type of cancer cells you have. Today thanks to the biopsy and great pathology report I am in complete remission. Also with Lymphoma stage of cancer does not totally determine outcome. I was stage 3b. Please have Dr you trust and get more opinions if you are in doubt. I got 3 opinions before I started treatments. I also did quite a bit of research on this site or similar. I find it helped to be educated on the process as it progressed. Keep us posted.

Sandy Ray

yesyes2
Posts: 512
Joined: Jul 2009

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
Posts: 6
Joined: Jun 2017

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.

lindary's picture
lindary
Posts: 544
Joined: Mar 2015

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. 

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