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How to be sure your cancer free?

nobody
Posts: 3
Joined: Apr 2010

Hi,I just joned this group today. I got aggressive T-Cell Lymphoma near the end of 2007. I was hospitalized on Aug 31,2007 and was diagnosed with pancreatits. Was released form the hospital 1 month later. On Nov 10,2007 I was hospitalised again and told they had diagnosed me wrong and that the lymph node that had blocked a valve in my pancreus had grown and it had spread from my groin to contaminate lyphm nodes in my chest and were sticking out of my neck by the time they were able to catch what was causing my back pain, night sweats, fever, vomiting and fatigue.

On April 10, 2008 I was suppose to get my final treatment of chemo. They had also told me i would need radiation on my chest because an enlarged lyphm node that was becoming an issue in that it could block both my airways. They also said i had cancerous nodes in my groin on the right side. On April 10 knowoing all this i never expected to be told my previous gallum scan has shown I am cancer free. I was happy and sort of confused but they told me i had nothing to worry about.

Well in June of 2009 I started to get back pain again and fatigue. I went and talked to my onologist and got a ultra sound on my stomach, and back x-ray. Nothing. Went to my family doctor got another ultra sound for kidney stones and to check my bladder. Got another back x-ray and a bone scan. Nothing! I was shocked i knew there was something wrong with me. I fought with both my onologist and family doctor to get a CT Scan because that was how they caugth the cancer the last time.

Finally got the CT Scan came back with an enlarged thymus gland and a 3.9cm lymph node in my groin on the left side. My oncologist has dismissed this an error saying an enlarged thyus gland is typical for people who have had chemo only its been over two years and becasue she could not feel the large lyphm node she says it probably doesn't exist.

I can't believe this just becasue i didn't complain of pain in my groin it could still effect me in other ways. Like i get these red plotches on my arms and legs and if you didn't see them you would not know they were there. And i am extremely tired, have constant back pain adn feels like there is an elephant on my chest as well as a feelign like there is a growing rock between my ribs but they all say 'Oh its just pain you are going to have to live with.' THey also told me the longer teh pain goes on the more we rule out cancer becasue you do not look sick. I mean i had night seats and various ranges in temperature in 2007 but attribute to maybe figthing a flu. i don't know.

I would just like to know if this is normal that you fight with our doctors to get them check and listen to you. I resentlly have been feeling like i am being called a liar and that i should stop bugging them. I mean why would i still be looking in to this now if there was no pain. i am sure it is back but still can't get the prove to do somtehing about it. I feel helpless. I go back for another CT Scan in 3 months if they dismiss me again should i be pushing for a PET Scan just to completely rule out cancer like they so egarly want to. I got the cancer when i was 17 but was not offical diagnossed until i was 18. I am now 20 and feeling like i am crazy since i have all this pain but no way to explain or fix it. Can any of you offer any solutiions or similar experiences? All information would be greatly appreciated.

Thank you all so much and my prays are with all you very brave people.

yesyes2
Posts: 592
Joined: Jul 2009

Hi Nobody,
I'm so sorry your having difficulties and your doctors aren't giving you the attention to it that you need. And I'm so sorry you are experiencing pain. Have you thought about getting a second opinion? With a cancer diagnosis most oncologists take swollen lymph nodes very seriously. I had an aggressive lymphoma, B & T cell, and a recurrance, and both times it was found on CT scans as the nodes were in my upper and lower abdominals, where they can not be felt. I also had fatigue and pain. I am currently in a complete remission which just means that on scans there is no evidence of disease. There is no way to tell if you are cancer free, however aggressive lymphomas can be considered cured if you are in remission for 5 years. If it were me I would push for a second opinion with an oncologist and get that node biopsied as soon as possible. It's very sad but sometimes young people are not taken very seriously by the medical profession, but that is just my opinion.
Good luck and let us know what happens. I hope that this is just a bump in the road for you.
Leslie

HeartofSoul's picture
HeartofSoul
Posts: 730
Joined: Dec 2009

From what i read in your post, it sounds like your medical team failed in many ways. Cancer divides and spreads leading to increasingly difficult challenges in controlling the cancer

1. Get 2nd Opinion promtply from another medical oncologist

2. Insist on cat scan on groin, pelvis, abdoman and chest DO NOT WAIT 3 MONTHS

3. GET PET Scan

4. Get A blood test to check the number of white blood cells. The lab also checks for lactate dehydrogenase (LDH). Lymphoma may cause a high level of LDH.

5. Get Bone marrow aspiration and Lymph node biopsy : The removal of bone marrow, blood, and a small piece of bone. A pathologist views the bone marrow, blood, and bone under a microscope to look for signs of cancer.

6. Find out the exact type of Lymphoma you have. There are divided into two general types: Hodgkin lymphoma and non-Hodgkin lymphoma.

Lymphomas

Hodgkins (often curable)
Nodular Sclerosis, Mixed Cellularity, Lymphocyte Depleted, Lymphocyte Predominant

Non-Hodgkins
Diffuse large b-cell (aggressive)
Follicular (indolent)
Mantle Cell (aggressive or indolent)
MALT (indolent)
T-cell and NK-cell types (In your post, you mentioned T Cell)

Its not a coincidence the pain and discomfort your having are in and around your chest, back, groin, and ribs. Symptoms include the painless enlargement of lymph nodes, spleen, or other immune tissue. Other symptoms include fever, weight loss, fatigue, or night sweats.

The lymphatic system is part of the immune system. The lymphatic system includes following:

Lymph vessels: The lymphatic system has a network of lymph vessels. Lymph vessels branch into all the tissues of the body.

Lymph: The lymph vessels carry clear fluid called lymph. Lymph contains white blood cells, especially lymphocytes such as B cells and T cells.

Lymph nodes: Lymph vessels are connected to small, round masses of tissue called lymph nodes. Groups of lymph nodes are found in the neck, underarms, chest, abdomen, and groin. Lymph nodes store white blood cells. They trap and remove bacteria or other harmful substances that may be in the lymph.

Other parts of the lymphatic system: Other parts of the lymphatic system include the tonsils, thymus, and spleen. Lymphatic tissue is also found in other parts of the body including the stomach, skin, and small intestine.

nobody
Posts: 3
Joined: Apr 2010

Tyou for your support and encouragement. I will follow your advice HeartofSoul I will call my oncologist tomorrow and request an earlier CT Scan, along with a PET Scan, blood work and bone marrow aspiration. Thanks for the information on what else to look for in your blood. I really apprciate your guidance. We are lucky that there are people willing to help out one another and lend support.

Will post on my out come. Thanks again

HeartofSoul's picture
HeartofSoul
Posts: 730
Joined: Dec 2009

its good your calling today to get appt sch for cat scan, pet scan, and blood work/biopsy. Please update us on how you made out

nobody
Posts: 3
Joined: Apr 2010

I called but had no success getting a hold of my assigned oncologist. Spoke with a triage nurse who said the comments in my report stated they only wanted to have the CT Scan to be on the safe side. So they would not do anything. They told me if things change dramatically to call. We'll I can say one thing I will be calling if I reach the breaking point. But all they'll probably say is check into the hospital they forget that people have jobs and responsibilities that cannot easly be dismissed regardless of the pain. I have worked through lots of pain I mean the only reason they hospialized me the last time was becasue I literally couldn't walk other than that i was working through the pain right up until then.

I am thankful for your supports but it seems i will need to be unable to function before my doctors believe that i have the cancer again. Well by the time I get the CT Scan in July I will have passed a year of increased pain and symptoms. Maybe then they will complete the biopsy on the enlarged lymph node and take the bone marrow sample.

I appreciate your support.

Will post if anything further happens to speed up the process. Hopefully I am strong enough this time around to stay healthy before and during the fight.

HeartofSoul's picture
HeartofSoul
Posts: 730
Joined: Dec 2009

I would start today by looking for another medical oncologist who is both more responsive and listens to your concerns. i can help locate a med onc specializing in the field of lymphoma in your geographical area if that would help. If your instincts are correct and there is a malignant tumor in your system, it needs to be diagnosed and treated now.

once a med onc can be located, you can ask for all your records to be sent to the new DR and center. When the triage nurse said the comments in yuor report stated they only wanted to order a cat scan to be on the safe side, why would any DR not want to be on the safe side.

From what you have said about your med team so far, I would not put my life in their hands and I dont think you should either

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