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Can Someone Diagnose Me Please?

CatherineC's picture
CatherineC
Posts: 6
Joined: Aug 2017

Hey Everyone!

 

My name is Catherine and I'm 28 years old. 2 weeks ago I went into the doctor's office to have a cough that just wouldn't get better and a collection of cyst/wart-looking red bumps that started on my feet and slowly started growing on my upper legs looked at. The doc dianosed the red bumps as Mullescum Contagiosm and ordered a chest x-ray. Just a few minutes after getting the x-ray the technitions immediatly wanted a cat-scan with iodine contrast done because my x-ray showed a very large mass in my lungs. 

The next day my cat-scan results were back and my doctor said I had cancer. I was referred to a specialist and told it was most likely either lymphoma, a germ-cell tumor, or thymoma. I went in for surgery the following week and got a lymph node biopsy done, a bone marrow sample taken, and they placed a port for chemotherapy on my thigh. It's been close to a week now and I should be getting the results soon, however I suck at this waiting game and I want to know what's wrong with me now.

I know you guys aren't doctors or anything, and I should take all interpretations with a grain of salt, but I thought I would post my symptoms and test results here to see if any of you can pinpoint what is happening to me before the doctors. Here are my symptoms:

  • Night sweats (since Dec 2016)
  • Weezing (since Dec 2016)
  • Intense itching all over, but specifically on my feet, lower legs, and hands (since Dec 2016)
  • Red bumps resembling Mullescum Contagiosm (since Dec 2016)
  • Dry cough (since April 2017)
  • Fatigue (since April 2017)
  • Struggling to catch my breath (since May 2017)

The cat-scan revealed that my lung is partially collapsed, which is why I can't breathe. I've been put on oxygen and it helps tremendously. The following are my blood test results and the results of my scans verbatim:

Cat-Scan #1 Findings - Chest CT:

  • Lungs / pleura / hila: A large mediastinal mass fully defined below occupies most of the anterior left thorax. Residual aeration in the posterior left lung demonstrates compressive atelectasis in the lower lobe. There is a small to moderate size water attenuation layering left pleural effusion. The right lung is negative. No suspect nodules visible in the aerated components of either lung.
  • Lower neck: There is bilateral lower neck adenopathy. A large medial right supraclavicular lymph node measures 2.5 x 5.8 cm. Largest on the left 1.4 x 2.3 cm. Both are suspect for malignancy.
  • Mediastinum: Correlating with the chest radiograph, there is a large soft tissue attenuation mass of the anterior mediastinum measuring up to 12 x 20.5 cm transverse diameter and nearly 18 cm craniocaudal. It is mildly heterogenous throughout and encases multiple vessels. The SVC is severely compromised but patent. The mass abuts and partially encases the brachiocephalic arteries and fully encases crossing mediastinal veins. The mass fully occupies the anterior left hemithorax and the mediastinum the lateral pleural margin. There is no internal calcification. The lower attenuation areas are in the range of water and not fat.
    • The left pulmonary artery is severely extrinsically compressed by the mass but shows no filling defect.
    • The main and right pulmonary arteries are normal.
    • No mild pericardial thickening of relatively high density. Heart is otherwise negative.
  • Heart / pericardium: Per above
  • Vessels: Per above
  • Lymph nodes: See above. No significant additional lymph node findings.
  • Body wall: negative
  • Upper abdomen: There is a hypoenhancing lesion in the posterior segment right liver measuring 2.2 x 3.2 cm of unclear nature. A focus of hypoenhancement anteriorly in the right lobe, image 55 is more likely benign. Entire liver not included.
  • Adrenals: normal.
  • Splenic size: normal.
  • Bones: No concerning lytic or blastic bone lesion. Focal fat noted in a midthoracic body, not significant. 

IMPRESSION:

1. Large anterior mediastinal mass compromising the left hemithorax, the left pulmonary artery and encasing multiple vessels. Presence of enlarged lower neck lymph nodes, left pleural effusion and indeterminate liver lesion are highly concerning for malignant origin. Consider malignant thymoma, lymphoma and malignant germ cell neoplasm.

2. The indeterminate liver lesion could reflect a hemangioma though I do not identify typical peripheral nodular enhancement and this lesion remains indeterminate until further assessment is performed preferably with MRI.

3. There is severe compromise of the SVC although the lumen does remain patent.

Cat-Scan #2 Findings - Abdomen CT:

  • Visualized lung bases: Small to moderate left pleural effusion appears some are to the prior study as does the compressive atelectasis in the left lower lobe . The tiny amount of compressive atelectasis in the right lower lobe
  • Hepatobiliary: There Is a tiny round hypodensity in the anterolateral right lobe which may represent tiny cyst although too small to characterize. There is a 2.4 cm mass posterior aspect of the right lobe in segment seven that exhibits puddling type peripheral contrast enhancement. On the delayed images there is partial filling of the mass with contrast. This could be secondary to a hemangioma
  • Spleen: Negative.
  • Adrenals: Negative.
  • Pancreas: Negative.
  • Kidneys ureters or bladder: Negative.
  • Genitalia: Negative.
  • GI: Negative.
  • Vessels/spaces/nodes: No pathologic-appearing retroperitoneal or mesenteric adenopathy
  • Bones/soft tissues: There is an umbilical hernia containing fat
  • Additional findings: None pertinent.

IMPRESSION: No pathologic-appearing adenopathy in the abdomen or pelvis 2.4 cm mass in segment seven right lobe of the liver demonstrates delayed contrast enhancement suggesting a hemangioma as to etiology. Since there was only partial delayed enhancement however other solid hepatic masses not entirely excluded. If further diagnostic imaging is desired MR the liver would be helpful Small to moderate left pleural effusion and left basilar atelectasis appears similar to the prior study There is now a tiny amount of compressive atelectasis in the right lower lobe.

Cat-Scan #3 Findings - Neck CT:

The examination demonstrates the presence of a large anterior mediastinal mass. There is a mass present within the right supraclavicular region. This measures 5.4 x 2.8 x 3.6 cm. This is consistent with a enlarged lymph node. There is an enlarged lymph node present within the left supraclavicular region. This measures 2.4 x 1.5 x 2.2 cm. This likely represents the presence of lymphoma.

The tongue base and floor of mouth are unremarkable in appearance. The parotid glands are unremarkable bilaterally. There is no evidence of abnormality of the submandibular glands. The thyroid gland is unremarkable. The parapharyngeal soft tissues are unremarkable.

IMPRESSION: Bilateral supraclavicular masses as described above. Large anterior mediastinal mass. These findings likely represent lymphoma. The supraclavicular masses would be amenable to percutaneous biopsy.

My Blood Results:

I know all the information is a lot and I will know more once the biopsy results get back, but the waiting is killing me. I was wondering if anybody had simlar results/findings to mine and what the outcome was. I would love to hear about your experience. I will keep you posted on my biopsy. Thanks in advance!

 

 

 

********************UPDATE 8/4/2017***************************

The doctor gave a diagnosis - Classical Hodgkin Lymphoma, stage 2 - bulky disease.

I start chemo next week, something called ABVD for 6 weeks, followed by radiation. 

Thank you all so much for your responses.

 

 

po18guy
Posts: 991
Joined: Nov 2011

Pathology on the biopsy samples must have been complete in order for port placement to occur. Call doctor and ask what those results were and if you may have a copy of the report. Your combination of symptoms, by simple math, point to as many as 2,700 different diseases or conditions. As to waiting, sadly there is simply no way around that.

On another forum, the operative phrase is: You do not have cancer until a pathology report says you have cancer.

CatherineC's picture
CatherineC
Posts: 6
Joined: Aug 2017

They installed the port at the same time as they performed the biopsy. The mass in my lungs is HUGE, which I think is part of the reason why they were so quick to say it is cancer. They obivously did not want to wait untill the biopsy came back. 

I meet with the doctors tomorrow. I'm just frightened...

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Catherine,

It sounds to me like you have advanced Lymphoma. As Po noted, all stages of the disease are in most cases readily treated and usually even cured (by 'cured', I mean put in to permant 'complete remission').

Nearly always, there is no rush to treatment, but you have some seriously compressed blood vessles. It sounds similiar to what I had. I was diagnosed due to chest pain, and it was discovered that my arteries were clear: the pain was from huge nodes pressing against the walls of the heart.   But my case ended well also.

It is good that they assumed the need for the port, since installation and removal are quick and easy, minor proceedures, and you want to get moving as soon as the biopsy results are confirmed,

max

CatherineC's picture
CatherineC
Posts: 6
Joined: Aug 2017

Thank you Max. I had a doctor's appointment this morning and was officially diagnosed with Classical Hodgkin's Lymphoma, Stage 2 - bulky disease. Getting the port in was actually a bit more painful than I thought it would be... I was only under local anestesia due to my collapsed blood vessels and it wore off temporarily and I remember waking up and crying during the proceedure. I hope getting it out wont be as traumatic.

po18guy
Posts: 991
Joined: Nov 2011

Someone suspects that it is lymphoma, correct? Lymphoma is treatable at all stages. Some forms grow huge tumors which melt away once treatment hits them. I have been at stage IV at least twice. Widespread disease involving my lymphatic system, bone marrow and small intestine. Probably 100 tumors total. And that is with two extremely rare and aggressive T-Cell Lymphomas for which there is no specified treatment,, as well as the marrow cancer which frequently mutates into Acute Myeloid Leukemia. I first had a single lymphoma, then a relapse, then a second relapse and mutation into two lymphomas, then a bone marrow cancer called MDS as a result of years of treatment. After eight years and three different cancers, I was placed into full response. I am still here and happier to be alive than before I had cancer. So, do not be afraid.

On a side note, what do you believe? Do you have a world view, belief system, philosophy or religion? If so, dive deeper into it as all of them treat the subject of illness. If what you believe is not comforting, change your beliefs into those which are comforting. Otherwise your options are basically heavy drinking or drugs.  

CatherineC's picture
CatherineC
Posts: 6
Joined: Aug 2017

I find your response to be very comforting poguy. Thank you for sharing it with me. I have been studying to convert to Judaism from Catholisim for the past couple years now, so that is my belief system. I am planning to tell my Rabbi what's going on as soon as I have a more firm diagnosis and perhaps he will discuss with me more about being jewish and sick.

What about you? Thanks so much again for your response!

PBL
Posts: 182
Joined: Jul 2016

Hello Catherine,

As Po said, there is not much any of us can do about the waiting involved in the diagnostic process and the anxiety it causes. It is a lonely experience. Posting on forums such as this can help. Yoga and meditation can help to some extent. So can anxiety medications. Asking your doctor for precise information regarding your case, and making sure s/he understands that you want to be kept in the loop can also help. Obviously, there are all sorts of more reasonable options than "heavy drinking or drugs".

Hang in there and do keep us posted.

PBL

CatherineC's picture
CatherineC
Posts: 6
Joined: Aug 2017

Do you have any suggestions when it comes to anxiety medication? I'm itching like crazy and I'm going to ask the doc tomorrow to prescribe something to help, maybe I will also inquire about my anxiety. 

Thanks so much for the feedback! I hope all is well.

po18guy
Posts: 991
Joined: Nov 2011

There are several medications that can be used either short or long term. One of them will have the effectiveness and a side effect profile which are acceptable to you. Make the appointment and ask doctor.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Catherine,

When my wife and I made our first visit to my oncologist after the biopsy results were back (he had already drawn up a treatment plan) he handed me a perscription for Ativan (has several chemical names also in routine use), and said, "Get this filled right away."  I took it off and on over the next 7 months. It was not heavily sedative for me, and did wonders.  I am not an "addictive" personality, and walked away from taking it after chemo with no trouble at all, but do use as perscribed. 

max

dana-mihaela's picture
dana-mihaela
Posts: 39
Joined: Sep 2016

You are so young I am so sorry you have to post here on this forum and have all the problems I read on your report. You will get the biopsy results tomorrow and you will know more about the treatment. All your symptoms, night sweat, itching, fatigue ,those enlarged lymph nodes  make me think you have some type of lymphoma. Sometime lymphoma presents itself as solid tumors quite big as yours. I had the same type of tumor not on my lungs but on my pelvic area surrounding the lower spinal cord like a helix. Mine was marginal zone lymphoma a low grade lymphoma. 

Regarding anxiety which is normal to some point ( I am the queen of it though) I am taking lorazepam 1 mg at night time (Ativan). I did this for a couple of months and now I am taking an SSRI - Lexapro 10 mg each day. As you know all of those have side effects and it is a lot better if you can do without and try meditation, mindfulness or counseling. Or just talk to PO 18 , he is an inspiration to me and all of us here at this forum.

Good luck,

Dana

CatherineC's picture
CatherineC
Posts: 6
Joined: Aug 2017

Thank you so much for your response Dana. I have officially been diagnosed with Classical Hodkins Lymphoma, stage 2 - bulky disease. I am taking an antidepressent combo of remeron + effexor which works wonders.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Catherine,

Classical Hodgkin's is almost always curable, so in a weird sense your news is "good," at least relativley.  You will likely receive the most common HL chemotherapy combination, "ABVD," which is what I had.   You will not receive Rituxan, since classical Hodgkin's does not express the CD-20 cell, which is all that Rituxan kills.  You also will almost definietly not get Prednisone or other steroids.

I would think that with the size of the bulk, you are looking at 3 to 6 months of chemo, and a slight chance of radiation also (improbable, but possible).

There are 5 strains of commly-recognized Hodgkin's: Four are "classical," due to the fact that they all express classical, identifying HL cell types.  A fifth type is atypical or non-classical due to differing cell types.  I had the non-classical form, or "NLPHL."

Non-Hodgkin's (NHL) is much more common than Hodgkin', and there are around 40 differing varants of NHL.  Most NHL's are also curable (in the same sense of the word as being able to put in permanent or long-term inactivity), but the few strains of Lymphoma that can be immediately deadly and extremely aggressive are all NHLs.  Please keep writing; every issue you have, someone here can address, usually numerous people,

max

https://www.lymphomas.org.uk/about-lymphoma/types/hodgkin-lymphoma/classical-hodgkin-lymphoma

lindary's picture
lindary
Posts: 641
Joined: Mar 2015

I was diagnosed with follicular non-Hodgkins in De 2015. I too was having problems with breathing at the time. Turns out that I had pluerisy thanks to the FNHL. Foudn out that the fluid around the lung is emptied by the lymph system. The right side was compromised so the fluid had built up. They had to put a catheter in so we could drain it until the chemo got the lymphoma down to where that part of my system started working like it should 

Key is to make sure you understnad what your doctor tells you and ask questions if you don't.  Looking for information on the interent canbe helpful but watch the sources. Major know cancer centers are good. I also tended to ignore sites that were more than 2  or 3 years old since treatments can change so fast. Older blogs and discussion boards entries can be useful to learn of people's experiences but still keep in mind that treatments change over the years. 

Good Luck Catherine

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