Hi All. First of all I want to say this is my third time having cancer. I have always had to be different and rare. When I was 13 I was diagnosed having Hodgkin’s lymphoma stage 3A, at 25 I was diagnosed with follicular carcinoma of the Thyroid gland. Now 45 female I’m diagnosed with Stage 4 Indolent Mantle Cell Lymphoma. Initially they thought I had Mantle Cell Neoplasm in Situ figured I was super. Lucky they caught it early. However over a year ago I began showing two abnormal glands in my neck, we did a FNA that was inconclusive I tried to push for a full excision biopsy as my FNA in my life have always been inconclusive. I have always been hard to diagnose. My oncologist figured we would do repeat ultrasounds every 4 months we’ll all of a sudden I went from two abnormal glands to multiple in a six month span, I knew something was up this was in October of 2018 I had to push to see my oncologist who didn’t feel a biopsy was necessary. I continued to push for over three months she said “I don’t think it’s thyroid” I said I don’t think it is either but I have a history of lymphoma. She still didn’t want to do anything but agreed for me to see the head and neck surgeon get his opinion. He agreed to do a full excision biopsy on March 22.
On April 12 I ended up in the hospital for three weeks the day I got the results saying I had Mantle Cell Neoplasm in situ. They did a pet scan in which I had multiple glands show up in my pelvic region however let’s not biopsy any. I had a colonoscopy which showed a twisted colon, ulcers, hemorrhoids, fissures, a fistula just about everything that could be going on was. They took a biopsy of one area which turned out negative for lymphoma I was told since it wasn’t in the gi tract I wasn’t Stage 4. I had an upper gi which showed my Barrett’s esophagus extended from a 7cm segment to 10cm, I also had a very large active ulcer and a smaller inactive ulcer. But let’s not do any upper GI biopsies. I pushed for a bone marrow biopsy as my platelets even though were high they had dropped over 100pts in a month.
I had had my follow up with the hematologist/oncologist on the 16th of May so just two days ago. Told I have Stage 4 indolent Mantle Cell Lymphoma (no treatment as of yet) however I have B symptoms of extreme itching especially my scalp, behind my knee and my private areas. I was told we will start treating when my blood changes, I have more multiple nodes, or larger nodes or organ involvement. I’m sure my liver is affected it’s 21cm it should only be about 13. I don’t have a spleen so we can’t go by that. I have bone pain likely a result of the mantles in the bone marrow. I have pelvic and abdominal pain. I’m just frustrated.
Im getting married in August that should be my focus not worrying about weather I will be around for the next 10 years. I honestly don’t know what to think. I have tried to ask for a transfer to Toronto where they have one of the top five cancer centres in the world. Still working on that. I live in a Canada. Anyway any input would be appreciated. They can’t do R-chop with me as one of the drugs I have already had the life time maximum.
I would love love to hear about others symptoms, and at what point you have received treatment. 
Hi and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear you are entering a third battle.
I had a different type of Skin NHL and it took 14 years before I had to get full on treatment as it had become very aggressive. For me it was hit is hard with chemo R-EPOCH and radiotherapy then go straight to have two Allo Stem Cell Transplants with Stem Cells from my brother - the conditioning for the Stem Cell Transplants was full on and certainly the chemo used for the Second was very very hard but it all got me in remission for the first time in 17 years.
It is important to get the very best consultants to look at your case and come up with a clear plan. Lets look for some of the MCL folks to pick up on your post.
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Hi again, I do like your determination to live life and keep your wedding and married life high up in your mind and go for it.
When my condition went very wrong back in 2013 I claimed a further 20 years to see my granddaughters graduated and married but I am now setting my eyes further in the future for great grandchildren lol
Get your pointy elbows into the medical world doors and aim as high as you can.
As John has said, over the years I have also meet an increasing number of folks with complicated medical issues and increasing ages going though an Auto SCT (using your own cells) and a few going through an Allo SCT (using donor cells)
SCT back a few years ago was my last and only roll of my dice, hard work but it did do the job. But I am sure that I would have more options now due to the developments.
((hugs))
Hey Everyone,
update, so after seeing my oncologist may 9th to tell me I’m Stage 4 and she will see me in a couple months for follow up we would do watchful waiting. Well I got my next appointment in the mail she didn’t want to do follow up until sep 30th. That seems like a long wait period considering I went from two abnormal glands to multiple in a six month span. First she told me is was Mantle Cell Neoplasm in situ to two weeks later saying oops bone marrow was positive for mantles positive for mantles so your stage 4. Well I’m 45 and female given the rarity of the cancer and my complete. Medical history I asked for a transfer to a specialized cancer Centre was denied. However I don’t wait patiently by. So I wrote a letter to my government addressing a number of concerns. Long story short my referral was made by my family Dr and medical hematologist/oncologist is finally on board and dictated a letter to the centre. I’m just waiting on an appointment which can be as early as next week so hopefully will have a plan in place and start some sort of treatment. One of the standard corses of chemo I can’t have because I have already received the maximum of that particular med. I’m getting married in August and even though the oncologist here things it’s indolent and slow moving I believe she is off. So the sooner I’m in remission the sooner I can relax for at least a little bit. Thanks for listening to my Rant! lol 
Good morning , or is it good night in Canada?
Well done you in keeping your pointy elbows in the doors of the medical professionals.
A second opinion is the way to go as with your medical history you know your body well and have an understanding that something is just not right.
Lets get this appointment soon and get you a clear plan to move forward with. The fact that you have had a number of treatments already will reduce some of the options but from my 20 years experience (with a diffrent type of NHL) there are lots of tools in the Haematologists Tool Box.
Dont lets this big bump in life hold you back from the enjoyment of planning your marriage, in fact this will make you even more determined to get through this and look to live a long married life.
My wife and I have been married 40 years past April and we have had to live 20 years with me being treated for cancer - this made no difference to the enjoyment we have had over these years.
((hugs))
