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Awaiting biopsy results

Shella677
Posts: 8
Joined: Mar 2021

Hi! New here and aimlessly looking for similar stories, hope, anything really to calm my nerves.  Mid Feb I noticed a large lump on the left side on my neck. Made an appt with my ENT and PCP, blood work came back fine and ENT ordered a CT scan with contrast. Results indicated that I have a 3 x 4 x 6 cm cluster of lumps on my left side (neck), lump on my right side and a 1.6 cm lump on the top of my right lung, that'a all the further down the scan gathered. At that point Lymphoma was mentioned. I had a needle biopsy and will hear the  results on Monday.  I am hoping for the best but have tried to prepare myself for a journey.  It scares me to hear how advanced I may be since there is a spot on my lung.  As far as symptoms go I do not have night sweats, fever, weight loss, have not been sick, no stomach or bowel issues. Symptoms I do have is of course the lumps, out of breath easily which I correlated with gaining the Covid 15 and just being out of shape (not gasping for breath, hugging and puffing more). Symptoms that may or  may not be connected include: July 2020 I woke up with excruciating shoulder pain that ended up affecting my whole arm and my hand was numb. Chiro said my tendon popped out of its groove ( I had started working out so it fit the bill). A few months of chiro care and I was fine, weakened on that side but no pain. Jan 2021 I woke to back pain worse than I've had in the past,  shortly followed by a numb left butt cheek and back of leg. Chiro care helped but I am still currently numb , not as big of an area , there is also pulling pain in my hamstring certain ways I move, I did have a lower back X-ray that indicated mild scoliosis, and L5 S1 mild disc degeneration. So now we are back to what's currently going on and wondering if the shoulder / back issues are also lymphoma related.  I guess I don't have any questions other than guidance as to what to expec, looking for similar stories.  Thank you for taking the time to read, best wishes for all!

PBL
Posts: 315
Joined: Jul 2016

Hi,

Just a few thoughts here:

- you do not mention any detail as to your age group, weight, fitness level or type of physical activity you have started. Depending on those points, your aches and pains could have nothing to do with lymphoma;

- you also state having had an encounter with CoViD-19 (I assume 15 is a typo...) - however, you do not indicate how long ago that may have been. Enlarged nodes may be caused by all sorts of infections - including CoViD-19 - and are not necessarily a sign of lymphoma;

- having enlarged nodes is not, in and of itself, sufficient for lymphoma to be suspected. Lymph node morphology may mean a lot more;

- even assuming you might be dealing with lymphoma, having no symptoms other than enlarged lymph nodes would not be suggestive of widespread, advanced disease. However, even when you are diagnosed at stage IV, many common lymphomas will readily respond to treatment.

One last thought: more often than not, needle biopsies will not yield sufficient material for a complete and definitive diagnosis to be reached - so, do not get your hopes too high of having all the answers to your questions on Monday...

As a conclusion, I would say, enjoy the weekend, do not speculate too much over what it might or might not be, and walk into that appointment ready to hear whatever the doctor has got to say.

I hope this helps. Do let us know how things go.

PBL

Shella677
Posts: 8
Joined: Mar 2021

Thank you for taking the time to respond. I should have included that I am 39, female, 5'8", 180lbs.  I  have a desk job which I have attributed to my neck/ back pain until recently and I have let my mind go wild. I was starting to strength train with weights again  when I had the shoulder incident. I have recently taken up Pilates which seem to help. I do clean a lot, tend to our mini farm, have 5 kids , so I'm pretty hard on my body physically and never really looked into the aches and pains until now.

COVID 15 I was referring to gaining weight over quarantine which led me to believe why I am out of breath climbing our stairs these days.

The wording on my scan results include conglomerate lymphadenopathy, if that helps explain anything further.

 As for Monday's results I figured it would be a starting point. I do plan to update this post.  Thank you again for responding and I will enjoy my weekend!

ShadyGuy
Posts: 684
Joined: Jan 2017

 

You are justified in being concerned. It may not be lymphoma but something is wrong. My non-professional opinion is that whether the needle biopsy is positive or negative, but especially if it is positive, ask for an excisional biopsy which will better define your situation. Please let us know how it goes. All my very best to you.

Shella677
Posts: 8
Joined: Mar 2021

 at the ENT left me confused and not sure how I should feel really.  The final biopsy results were  not in, preliminary findings say cancer but not lymphoma.  He said it is time to be referred to oncology for a PET scan. He mentioned the spot on my lung but said it's rare that a 39 year old non smoker have lung cancer. The referral order says the diagnosis is adenocarcinoma of lung. Any thoughts, suggestions, experiences?

PBL
Posts: 315
Joined: Jul 2016

The PET scan will show any other spot that wasn't detected by your earlier CT and physical examination, which will determine stage and to some extent, treatment approach.

Unfortunately, this being the lymphoma forum, I am not sure you'll be able to get much in-depth, reliable information on your diagnosis...

All I can say is that Adenocarcinoma is the most common non-small-cell cancer. In recent years, apart from the "classic" triad of surgery, radiation therapy and chemotherapy, treatment advances have been made, namely in the form of immunotherapy, and possibly CAR-T cell therapy as well.

I would strongly encourage you to seek advice and treatment at one of the NCI Designated Cancer Centers - you'll find them here (copy and paste into your browser): [https://www.cancer.gov/research/infrastructure/cancer-centers/find] even if that means travelling, as that will likely be your best bet to benefit from top care and the most up-to-date treatments available.

I know this is tempting, but do not start googling and reading anything you find on the topic at this point, as your diagnosis is not final yet.  Great advances are made these days and you would only cause yourself more distress by reading stuff that is not up to date or that does not apply to you. Wait until the PET, which will probably be very soon, and your oncology appointment. You will get the information that is relevant to your specific case at that appointment.

I hope this helps. Do let us know if there is anything more we can help with.

Kind regards,

PBL

Shella677
Posts: 8
Joined: Mar 2021

This isn't the forum for me but I had said I would update. Thanks for the information. I will not google this time as I was wrong in researching lymphoma. I do have an appointment with my local oncologist this Thursday to review the final results and schedule the PET.  The designated cancer center that was provided on the site you mentioned is only 1.5 hrs from me and I have been there before, the hospital, not actual cancer center.  I will need to make a decision about that.

Thank you for taking the time to respond as I did have the cart before horse but unfortunately not entirely.

 

ShadyGuy
Posts: 684
Joined: Jan 2017

to consider these results as just what the doctor said - "preliminary" and just a first step in diagnosis. Things could change. I would urge you also to seek an excisional biopsy and have at least two separate labs look at it. At this stage it is critical that your situation be very precisely known before any treatment is undertaken. You can beat this whatever it turns out to be. Please remain part of this forum! We are not doctors but we have first hand experience which may possibly benefit you as you face this. And we care about you.

PBL
Posts: 315
Joined: Jul 2016

...even with a non-lymphoma diagnosis  - and again, I am truly sorry the news wasn't good today. 

It is a very good thing for you that the cancer center is within reasonable distance from your home, and you may want to get in touch with them without waiting - if only to get an opinion. Even if you then decide to stick with your local oncologist, you could still benefit from their expertise, as your oncologist might coordinate with them.

If there are any questions we might be able to answer for you - about PET scans or other "general" topics, just ask and we'll try to help.

Kind regards,

PBL

 

DJS628
Posts: 77
Joined: Mar 2018

Hi Shella,

You don't have to leave us, thinking it's the wrong forum for you.  We are here for each other and want to support you whatever you find out what your situation may be.  Remember, we are not doctors, so we can't tell you much, but can share what information we have and share experiences.

I ditto the above about the excisional biopies are what is recommended as they get more tissue.  I had 2 lymph nodes removed to have biopsied in the past (in July 2017). I've also had a fine needle biopsy (in Sept. 2015).  The surgeon got enough samples, but he did mention sometimes they don't and then have to try again. Ouch!  So the excisional biopsy is best.

I hope they are going to biopsy one or more of your nodes, along with the spot on your lung, if possible.  But further tests are needed, too. 

Let us know what you find out and ask any questions.  We'll try to answer them.  Another poster is always saying try not to worry until you know for sure you have something to worry about.  Easy to say, but hard to do, isn't it?

Lymphomas can be cured no matter the stage, so don't lose hope. I'm not sure what to say about the spot on your lung.  You mentioned a cancer center not far from you.  I hope it's a good one and specializes in what they find wrong.

You didn't mention where you are located, but I hope you can find a cancer center with the best care for you, even if you have to travel a bit.  The American Cancer Society has a lot of resources and also the Leukemia and Lymphoma Society as well.

Hugs & Best Wishes,

Debbie

Shella677
Posts: 8
Joined: Mar 2021

how the preliminary results can say it's cancer but rule out lymphoma?

PBL
Posts: 315
Joined: Jul 2016

Their job is to differentiate the various cells in a biopsy sample. They are specifically trained to do so, using all sorts of techniques. Different cancers originate in different organs and in different cells at varying stages of maturity. 

Among lymphomas, for instance, which are cancers that develop in lymphocytes, there are different types of lymphomas depending on which mutation the diseased cells carry, and there are varying degrees of aggressiveness as well, depending on whether the diseased cells started from immature or mature cells.

Those characteristics of different cancers enable pathologists in the lab to identify, for example, lung or liver or prostate cancer in a biopsy sample taken from a completely different organ, such as a lymph node.

Very schematically put, if the abnormal cells found in your lymph node sample are not lymphocytes, then you do not have lymphoma.

I hope this is clear enough - let me know if you need more information. 

Kind regards,

PBL

Shella677
Posts: 8
Joined: Mar 2021

update this post.  the Biopsy result showed lung cancer not lymphoma.  I have have had my PET scan, MRI tomorrow and mutation biopsy results due next week. Needless to say I was / am super confused how a non smoker gets lung cancer but here I am facing either stage 3c or 4.  I have posted on the lung cancer forum but it is very quiet over there. I have since found another forum with frequent activity.  Many blessings to you all!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3662
Joined: May 2012

Shella,

The adenocarcinoma biopsy result you posted a while back would be the most common strain of lung cancer, but prognosis will vary a lot with genetic markers you may or may not have, and other factors.  It is not rare for lung cancer to occur in lifetime non-smokers, but it is not a common cancer for persons young-ish in age.  Your doctors might be able to determine a causal factor, but it is improbable.   With lymphomas and leukemias, the cause is almost never certain.  In fact, most commonly, the hematologists have no idea whatsoever.    Very best of luck to you.  We all wish that this world were more predictable,

max

PBL
Posts: 315
Joined: Jul 2016

Thank you for updating. I am glad you have been able to find a forum that is active enough to offer guidance and support in this ordeal. 

Unfortunately, the public's attention is focused on the association between smoking and lung cancer. But smoking is also a major factor in heart disease and stroke, bladder and kidney cancer, etc. Being a lifetime non-smoker does not guarantee that you will never get lung cancer - as you now know. Second-hand smoke - for example, having been raised by parents who smoked, or being married to a smoker can also result in lung cancer in a non-smoker. Other possible known causes are exposure to various chemicals (such as pesticides in the home/garden or in an agricultural area) in your familiar or professional environment. And radiation is also a likely suspect...

As Max has written above, the cause may never be known in most cases - so, there is little point in wasting your time and energy looking for one as you would likely not be able to demonstrate causality beyond a doubt except in very specific cases.

I hope the results to come from your brain MRI and tumor genetic profile can at least bring some hope in this very challenging diagnosis. Please do let us know how you fare.

Kind regards,

PBL

 

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