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Shouldn't the ENT be doing blood tests and other differentials before going right to a lymph node removal for biopsy?

imbeatingcancer
Posts: 5
Joined: Jan 2016

After a pet scan showed obvious multi layer swelling of nodes (1.5 to 1.9cm) one one side of my neck and a few in my abdomen, they are saying lymphoma. THE initial biopsy via FNA (fine needle aspiration) came back inclunclusive or at least that said the cells were atypical. So now  I'm scheduled to see my ENT oncologist and I asked about blood work ups that could show corroberative (sp?) indications of lymphoma, they said "no". We go straight too a dissection of a node. But it just seems that they should be doing blood work for differential purposes before an invasive surgery like removal of a node. Any ideas out there? 

 

Thanks in advance

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

 

I agree with the doctor that a node should be surgically removed.  Aspirational biopsies are very inferior to excised (surgically removed) specimines.  The doctor's judgement is correct, I feel. Note: No one here is a medical professional. What we share is experience, and the insight that comes with it.  We cannot challange what your doctors decide, but can give opinions -- informed opinions.  That being said, most writers here over the years have agreed that aspirational tests are to be avoided, and give many false negatives.  Blood tests, even specialized cancer blood tests (tests like Sedementation Rate, LDH, and others) very frequently miss lymphoma. 

I can relate to your feeling. I was diagnosed via a heart scan; no one suspected that I had lymphoma. My first CT showed grossly enlarged nodes from the neck to pelvic region, all over. The surgeon who was prepping to do my node removal said, "Only a biopsy confirms cancer, but you look torn up with lymphoma to me."  My bloodwork was very nearly normal, all the way until after I began chemo.

With significanly large nodes ranging from the neck to abdomen, you owe yourself the biopsy. Virtually all lymphoma biopsies are a very minor prceedure, and not dangerous. The surgeon will study the CT, and decide which node or nodes is best to extract. They usually attempt to be as minimally invasive as possible.

There are around 40 strains of lymphoma: 5 are Hodgkin's (HL), and around 35 strains are Non-Hodgkin's (NHL).  Some are very slow-moving and non-aggrerssive, and others are aggressive.  Nearly all are usually beatable, and all are treatable.  Whatever strain you have (if any), there will be a lot of folks here who have had the exact same disease.

 

max

imbeatingcancer
Posts: 5
Joined: Jan 2016

I guess I'm still in a state of denial, albeit this is subsiding and reality is kicking in. I've gotten a copy of my PET results and the inclonclusive FNA so, I'm still hoping for something different. Almost anything. And certainly for the most tratable of the lymphomas. 10 days out until the biopsy. 

All I keep thinking is that I told my primary about this enllarged node (visibly so) in my neck over the course of 3 visits and he said, " Joe, you worry too much" He furthered, "You are a skinny guy and some people just have enlarged nodes. Finally 3 weeks ago, a whole new lesion broke out next to the one. I finally went to my old doc who immediately scheduled ENT and CT scan.

After all the reading thus far, I'm over here rooting for Hodgkins. Sheesh

I wanna sue my primary for blowing me off 3 times and actually chasteising me for being too anxious.  

Has anyone had the feeling their primary care physician dropped the ball on presented symptoms?

 

 

 

 

imbeatingcancer
Posts: 5
Joined: Jan 2016

One  my FNA it reads: the differential diagnosis includes a reactive process and high grade lymphoma."

Does that mean I likely have a high grade lymphoma????????????? I understand differential diagmosis. What it seems to mean to me is that, although there is no clonclusive lymphoma diagnosis, that they have tested the biopsy material with a reactive process and that if it is lymphoma, it's a high grade. I assume high gradt to infer - AGGRESSIVE

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Imbeating,

Yes, slides are "stained" by pathologists, and they react or don't react to various chemicals which suggest this or that situation.  The biospsy report will have statements like, "Slide #4 stains negative for CD15, negative for CD30," or similiar verbage.  But do not "assume" anything at this point.  There is NO diagnosis yet, since only a biopsy can establish a definitive diagnosis.  Do not make the leap to "aggressive" either; that is not established.

IF you are diagnosed, and IF chemo is scheduled, I very much recommend a port.  The infusions are so much easier that way, and safer as well.  I have taken several friends for infusions who refused ports, and their arms just got into horrible shape over time. One friend ended up on a "PIC Line," which while safe, is inconvenient; the cath tubes hang down your side when not in use, and showering is problematic. I would get a port if long term chemo is prescribed.

It is wonderful that you were able to assist your wife, and that she beat small cell, a tough disease. You probably learned a great deal during that tough period. In general, lymphoma is much easier to beat that small cell.  Similiar to her, I was tested for heart damage because of constant shortness of breath (my breath is too weak for me to speak on the phone at times), but the test was negative; no damage.   I am also having a lung nodule followed via CTs, but the doctor says it is very likely benign. It had actually shrunk 1mm, last CT. I do have fibrosis, both sides.  I get a PSA in a few weeks for my former prostate cancer, which appears cured.  You have to just be slow and systematic.  One day at a time. Use any stress relief technique you know.

Installing a port is quick and easy, a very minor proceedure. Mine took about 25 minutes.  Some cancer centers do REQUIRE a port for numerous chemo drugs, due to their toxicity. This varies by drug and cancer center; policies differ.

But for now let's just hope you have no cancer,

max

imbeatingcancer
Posts: 5
Joined: Jan 2016

THanks for your thoughtful and reassuring reply, Max. That fibrosis was very painful for my first wife. Especially since the radiation was baseball size through the mediastinum (sp) - then because of the internal burning.... scar tissue, etc..... what followed massive amounts of painkillers that, in the end, at just 45, I believe killed her. In actuality, it was a new doctor that suddenly reduced her pain meds and ativan.... she went tachycardiac after hours of complaining of anxiety. That's a whole story unto itself. I guess I'm just commenting on the issue since pain is almost a form of cancer, as well. 

It's true that the diagnosis has not been 100% made yet. I am the first to be in denial but I'm having to proceed as if the diagnosis has been made. 

In my first post, I am still wondering why, I'm not being diagnosed differentially... antibiotics and bloodwork seems much less invasive than the removal of a lymph node in my neck.

The physicians are so certain I have cancer, they are not even doing what I feel would be more prudent. So I have to assume that their push to do the biopsy indicates that I have cancer of the lymphatic system.... somewhere. That and the fact that there the damn things are, every day, not dimimishing in size. Yep, there is that reminder. Constant palpable small grape size nodes on one size of the neck.

You advice is sound - one step at a time...

Do you still have your port?

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

In the almost three years I have participated in this discussion group, I have learned that not only are we all individuals, so are our doctors. We all seem to have arrived at our diagnosis and treatment plan in different ways.

My own lymphoma was diagnosed by my family doctor who ordered a retroperitoneal needle biopsy. I went to our hospital's Interventional Radiology Department where a physician, using CT guided imagery, inserted a needle through my back to take samples from an abdominal lymph node. Four days later, I had a positive diagnosis of lymphoma and was referred to my hematologist/oncologist. 

Two days later, I was in his officce. I had 11 vials of blood drawn and a bone marrow biopsy. I left that day with orders/appointments for a PET scan, echocardiogram, and scheduled for a surgical excision of an axilliary lymph node as well as a port placement. The following week, I had my first chemo. Everything does not move as quickly for everyone, but I was very symptomatic.

Your doctor's course of action seems perfectly valid. If a positive diagnosis is made, don't worry, you will be having more tests before a treatment plan is made. 

Best,

Rocquie

 

imbeatingcancer
Posts: 5
Joined: Jan 2016

I'm familiar with the ports. I took care of my previous wife for 9 years b4 she passed -  cured of small cell lung cancer - but a severly damaged heart from radiation and chemo  - did you get an option for the port? I have good veins - I'm hoping I don't have to have one - thoughts?

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

yourbeatingcancer,

I have a port and am glad I do.  i didn't want the tubes hangin out of my arm with a pik, and with the number of blood draws, chemos, methotrexate treatments my veins and arms would have been trashed.  I might have to reconsider some of my summer tops though. In my opinion it's easier.  Not to mention that because of how aggressive my DLBCL was I was sent to the hospital and they tried to insert a pik line so they could start my treatment right away, they missed, hit an artery and my arm was black and blue from my shoulder to my elbow. Port placement was moved up to the next day and treatment began the following day. 

Good luck!

Sharon

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Dear Joe, Max has already answered much about ports, but I didn't want you to think I was ignoring you. I think there is as much port protocol as there is about everything else with infusions. I can tell you that nurses LOVE ports; it makes their work so much easier. 

My veins are good too. My clinic recommends that, if you have good veins, the port only be used for infusions. I had all my blood draws (and there were many of them) done in my arm. Likewise, the contrast for CT and PET scans also went into my arm. The reason is that every time the port is accessed, there is risk of infection. 

I'm so sorry to hear about the loss of your wife and want to thank you for being her caregiver for 9 years.

Hugs,

Rocquie

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

My first visit with my oncologist I got a whole bunch of reading material. It include some info about ports which I followed up with some research online. When I saw my oncologist for the second time she made it clear that I was getting a port. I am not sorry I did. I had 6 cycles of R-Chop. The first treatment did not include the Rituxan (paperwork delay) or the port. The drugs Doxorubicin and Vincristine in the Chop therapy, can cause tissue damage if they get out of the vein.

Since at my first session, almosst a year ago, I didn't have the port these 2 drugs were injected into the vein. At this point my veins were doing ok. As the nurse pulled the needle out from the second shot it slipped a little and nicked the vein. She put some heat on it right away and told me to do the same at home for a few days. I still ended up with a bruise and a lump about an inch long. The brusing went away in a couple of weeks but the skin was slightly discolored. Over the months the lump got smaller and is now gone but the discoloration of the skin is still there. It's not as noticible as it had been. 

With the port I did not have to worry about having that happening again. The neulasta shot has to be given into the muscle and I got mine in the arm. Blood draws depended on the situation. The ones done just before chemo were taken using the port. When I went to the speicalist at Rush blood draws were usually taken through the arm. There was one time I had a blood test done about every 2 - 3 days. After a few of those they had to use the port to get the blood because the veins needed a rest. Last blood test was about a month ago they still could not use my left arm but was about to use a vein the the right arm. I can't imagine what my veins would be like if I didn't have the port.

Linda

 

Don2088
Posts: 16
Joined: Aug 2015

Needle biopsies are often inconclusive. I had a mass removed that later turned out to be NLPHL. My oncologist and my second opinion oncologist both stated removing the node and testing it was the best thing because it gave them a definitive diagnosis.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

I'mbeating,

I no longer have the port. Some doctors have them removed shortly after chemo ends, some wait.  Some doctors wait as long as a year or more, depending on prognosis for possible relapse.  Some forms of NHL require long-term, follow up infusions, which is called "Maintenance Therapy."  This is usually on Rituxan or similiar drugs.    Most HLs do NOT do maintenance, because Rituxan is useless agaons most HLs; it is almost exclusively a NHL drug, although my rare strain of HL does receive Rituxan for first-line treatment at times (I received Rituxan for six months with my first-line drugs).

Some folks find the port annoying, but I did not. I got used to it fast, and basically never paid it any attention.  I was willing to leave it in forever if necessary.

max

illead's picture
illead
Posts: 863
Joined: Aug 2012

     My husband could not have a port because of his low blood count at diagnosis.  The doc was afraid to take a chance.  He had chemo every 3 weeks for 6 mos.  What you have to take into consideration are other things besides just the chemo.  You will no doubt get neulasta or neuphogen sp? shots the day after each chemo, and of course constant blood tests etc.  My husband also had infusions of hydration and procrit shots to boost his blood counts.  So being a pin cushion is not desirable either and like the others have said, your veins can become tough and much harder to poke as time goes on.  That happened to my husband.  It's too bad you have to wait so long to find out, but like Max said, try to take one day at a time and don't worry about losing ground with time.  Lymphoma treatment isn't usually dependent on an early diagnosis and it doesn't usually affect the outcome.  There are many with Lymphoma who are on watch and wait.  We all hope the best for you, and want you to know you are very welcome here and we are good listening ears.

Becky 

I just read Roquie's comment and thought I better edit this to say that since Bill did not get a port, I really did not know about the negatives.  Hope I haven't confused the issue.  You need to weigh what is best for you and what will keep you the most relaxed and less stressed.

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

I got my Neulasta shots in the stomach. Smile

illead's picture
illead
Posts: 863
Joined: Aug 2012

We were at the cancer center today so I was talking to the nurse and she said they don't give neulasta or procrit through a port because they are sub cutaneous.  I better stick to MCL, it's easierLaughing.  Ouch tho, the stomach doesn't sound fun.

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