Malt Lymphoma

Hi all i had an abcess under my left breas in Sept 2016 my gp treated with antibiotics after two lots she decided to send me for xray my left lung showed abnormalities so was asked to go to see Dr at Hospital who arranged a PET scan this came back showing a cancer in my left lung and small one in the right lung , i had consultation with the specialist surgeon who said they could remove part of right lung and six weeks after would have to have simular procedure on right lung , surgery went ahead and samples were sent for Clonality studies they shown that LGH this confirmed presence of B cell malignancy ,it states there was also T cell receptor clonality tis was felt to be cross lineage rearrangement and not indicate any additional desease . The question from the biopsy was raised as to weather this could be Lgg4 diseasebut the conclusion was it was less likely than Malt Lymphoma . Last visit was informed Low grade . I am now on Watch & Wait with three monthly blood checkes and checkups with Hemotologyist .

After two months got over lung op but since just feel tired a lot more and not sleeping well but thiscould be coming to terms with all this which i found very confusing to say the least , if anyone has been through simular situations any help or advice please contact me regards Mal

9 Replies

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  • I have a very different arrangement of symptoms but I know just what you mean about the confusion and bewilderment. Just rest assured that diagnosing nom Hodgkin lymphomas seems to be a bit of a guessing game at moments, as far as the medical side goes. On the personal side, Your life changes very quickly, as does your imagined future, and there is no rushing of the natural process of coming to terms. So glad you are in this group and keep talking!

  • Thank for replying as I felt totally alone as not wanting to worry family ect so play it down ill be fine, but inside very confused and trying to come to terms with future what ifs.

  • Hi! I have a similar story. Had lung biopsy done in late November of 2016. Revealed B Cell Lymphoma. Have been to the cancer centre and I asked what sub-brand of Non-Hodgkins Lymphoma I have. MALT. It has taken me over 2 months to heal up from the invasive surgery also! I have Sjogren's Syndrome, an auto-immune disease. Feel free to talk to me! I too have many questions.....trying to eat better, rest and walk 2 times daily for 45 minutes. I think it's helping! : )

    Sandy

  • Hi sandy sorry or delay in replying couldn't sigh in forgot password lol, took me two months to get over surgery but have days where I feel tired and not very motivated awaiting PET scan to see how other lung is doing so hopefully its doing nothing and I can stay on watch and wait without evasive treatment as it was diagnosed in both lungs but right one only small don't want that surgery again so hoping nothing changed ,have you had any treatment so far other than surgery ? I'm finding it all surreal at present as was perfectly ok until this lot discovered so looking for info and answers please keep in touch Mal

  • Mal, I know exactly what you mean. I had a 'cyst' for over a year until I pushed to get it removed. I developed more, and was finally diagnosed in October 2016. I'm currently on chemo and half way through but my symptoms are returning. I feel like I'm not myself, that my body is out of my control suddenly. It's a lot to take in and adjust to.

    You might find it helpful to link in with a support group near you do you can talk to other people in your situation?

    Hang in there. You're not on your own x

  • I know the feeling of...is this really happening to me? I'm getting blood work, and another CT Scan in mid February....to see if the spots have "grown" . Both lungs are speckled....one 2 cm nodule on my right lung. I advise you to eat well, do low impact exercising...such as walking...breathe in the air! Rest! I walk 2 times a day. After breakfast and after supper for about 45 minutes. I too find it hard to sleep...but after walking, I'm trying to relax and fall asleep. It's been getting easier with the routine I have.....

    My Doctor at the Cancer Centre is observing what is happening....re: bloodwork & CT Scan.

  • Malt, I too have similar. After months of tests I have SLL or CALL same. During c.t. scan, nodules discovered in both lungs. Two biopsy s revealed one cancer one not. Never smoked, no alcohol, organic. Dr. At Kaiser in California , hematologist, specialist, recomded " watch n wait.NO NO NO. Lymphs becoming larger w lumps..I changed insurance during open enrollment...Nightmare, went to CITY OF HOPE. They saw me immediately!!! Started me on IBRUTINIB or IMBRUVICA.

    LUMPS GONE IN 2 weeks. Hoping nodules in lungs gone too. Many Dr. Do not know about this new drug. Available ONE year...Go to a cancer hospital...

    Bobbi

  • What essential oils are you referring to? Interested! Thanks! Sandy

  • ok...I'll e-mail you from my hotmail account...check junk/spam etc if it does not show up in your in box! Thanks, Sandy

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