Advice for new lymphoma diagnosis

[Hal2628]

I just found out tonight my mother has lymphoma. Biopsy and another cat scan won't be done for 4 more days and they are sending her home. She lives in rural nova Scotia. Just looking for any advice regarding our next steps? Should we be seeking opinions in Halifax right away? Thanks

[Tinkerbellcgy]

My suggestion would be to wait until the results of the CT scan and biopsy have been received. Once that has happened, you will no doubt be referred to an oncologist in Halifax for further consultation and treatment.

I understand you are anxious about what is going to happen next but a treatment plan can't be formulated until it is known exactly what the results are. The waiting will seem like an eternity but please know that once the results are at hand, things may or can move very quickly depending on those results.

Please keep us posted as to any progress in this regard.

[Hal2628 in reply to Tinkerbellcgy]

Thanks for the reply. Yes we should know more soon. Just a bit impatient to find out how advanced it is.

Thanks again

[agamca3920]

I know exactly how you must be feeling! Our daughter (52 yrs) was taken into hospital suddenly with enlarged spleen and lumps in neck and horrendous pain in back. She had CT scan; bone marrow we were told they thought she had Lymphoma but had to do all other tests to find out which sort! Like yourself we just wanted the docs to do all or any tests and just get on with getting her started on 'recovery'. The docs were wonderful but it was two weeks before they found (in their words) the last piece of the jigsaw and then it was instant treatment. That was five weeks ago and thank God she is responding really well.

[laylalulu in reply to agamca3920]

Hi did your daughter have marginal zone NHL? Her case sounds like mine, my spleen was so large it was pushing my kidney out of place so painful anyway good luck with her treatments

[Hal2628 in reply to agamca3920]

Yes she is on strong pain killers for her back pain and spleen is enlarged so maybe it's similar stage/type. She's a strong 72 so hopefully treatment will be soon and she will respond well

[Shar0n Volunteer]

Welcome Hal2628. There is not much you can do until the biopsy and scan results come in. If the lymphoma is not an aggressive one then treatment will depend on the extent of the illness i.e. how many areas of the body are affected. If it is restricted to a small area it is possible that the option will be watchful waiting, and life can go on as normal for the moment, with regular checkups. If the lymphoma has spread further or is an aggressive type, then treatment will be commenced under the direction of the medical team. Until more is known, it is best to stay as calm as possible under the circumstances as it may not be as bad as it sounds. Wishing you and your mother all the best with the tests and if you have any questions there is plenty of experience and knowledge here for the asking.

[Hal2628 in reply to Shar0n]

Perfect thanks. Makes it harder living across the country from her but just hope that we get good news Thursday from her biopsy.

Thanks for the reply.

[laylalulu]

Hi Hal2628, i have NHL and my doctor is from Halifax NS. Welcome. Great site here for positive outcomes of this disease. Was your mother referred to a specialist in halifax yet? Her doctor should be doing so when she gets the results from her tests . As many of us have been told this is one of the better cancers to have and once you read a great deal of the treatments and how they turned out you will begin to understand why nurses or docs say that to us. The prognosis are good and our chances of long survival are pretty darn good too. I'm almost 3 years in watch and wait. Read up on lymphoma on one of the many websites for lots of information good luck to your mom. Stay in touch. I go to Halifax this month for my yearly checkup. My doc in Stephen Couban I do believe there is only one other hematologist/onogologist up there last I heard.

[Hal2628 in reply to laylalulu]

Yes she sees hematologist Thursday for a biopsy. Not sure of his name but maybe it is the same doctor. I guess one we know more we can start looking into more of what it is. We just know that her spleen is enlarged and a her lymph nodes all over are swollen. Hopefully it hasn't moved into any other sites yet.

Thanks again

[BelindaTupper]

Hi Hal 2628, you really do have to wait for the results of the scan to see the extent of the lymphoma. You mom's GP. should refer your mom to a Hematologist in Halifax for follow up. Waiting is the hardest thing to do, but there will be lots of waiting....might as well settle in. If it's progressed they may do a bone marrow tap to stage it. Internal medicine specialists can do this, too, but I had mine done in Halifax by my Hematologist. I'm in rural NS as well, in follow up treatment for non Hodgkins Lymphoma. Some of our smaller hospitals have oncologists and chemo units,too, but in my opinion the specialists in Halifax are so much more experienced with lymphomas. I opted to go to Halifax.

[Hal2628 in reply to BelindaTupper]

Thanks for the reply. Yes she has a hematologist meeting on Thursday so will learn more. Yeah I think she will be doing initial treatments in Halifax and then maybe down the road more local

Thanks again!

[BelindaTupper in reply to Hal2628]

Hal - I talked to your mom today. What a small world. I'm here for her, whatever she needs, and just down the street!

[Hal2628 in reply to BelindaTupper]

Haha what are the odds? This was the first site I came across and just asked the question to see if I could get any tips. What a small world. I think she feels pretty good about having you close to talk with. Thanks for the support you've given her now and down the road. It's nice having someone close that's been down this road. Glad to hear that your doing well in your recovery as well.

Thanks

Todd

[laylalulu in reply to Hal2628]

How nice for your Mom to have understanding and support, good luck to her

[l-al]

Best to wait for test results. NHL is treatable. I was diagnosed in 1994, am stage 3 but treatments keep on working. The last relapse was 2005, I am 81yrs old, so take it one day at a time.

[Hal2628 in reply to l-al]

Wow well that is great news. Thanks for the reply. She is a pretty strong 72 yr old so holding hope that she can do as well as you have.

[deestb in reply to Hal2628]

hi Hal2628 I live in rural BC and go to an oncologist in Alberta ..we live close to the BC Alberta border...I have no one to talk to but can get couselling in Alberta 2 hr drive away...I was diagnosed at 70 in 2014 ..am on Watch and Wait but had a spike in the light chains lambda recently ..I have wondered if anyone my age was diagnosed ...have been searching so many sites but when saw l-al and your posts I don't feel so alone..thanks !!!

[BelindaTupper]

Hope she gets a good report on Thursday. Ask lots of questions and take notes. It helped me to remember things. It's all a bit overwhelming.

[S-a-234]

...Hal...I'm sorry your mom was diagnosed with this disease....I was stage four three years ago....chemo went great, I just treated every symptom that came up and didn't move much for six months (the months I was receiving chemo) as I had no energy and if I did do too much I would not feel well. My greatest concern when I was diagnosed was that it would frighten my children, though they were 26 and 23 years old...no child wants to hear their mother isn't well....So, first let me say this can go well....

My diagnoses came up suddenly....I was short of breath....by the time they did the biopsy and PET scans it became an emergent problem as the tumors, which were throughout my torso, started to push on my heart which started to come up into my neck. Crazy but true. So, as long as your mom doesn't experience symptoms such as left shoulder pain....or any new development, and as long as she isn't too far from a hospital....to the best of my knowledge...which I admit is not extensive....this is generally not an emergency diagnoses. Seems my case was not common.

I will share one very important thing I learned about prednisone which was one of my chemo drugs (RCHOP) My first chemo treatment was over four days in hospital because of the heart issue. I was on 100 mg of prednisone each day. This is a high dose of prednisone. When I was being discharged they said I would not be tapering the prednisone (decreasing it slowly over days)....This is really important....I would go on to find that they do not...at least the three doctors I spoke to about this.....they do not taper. Well, I went home and the next day and days after that I crashed. I thought this would be my life....sicker then I had ever been. When I went back for my second round of chemo I said I wanted to taper the prednisone. If your dog goes on prednisone they will taper him off the prednisone.....I had never heard of just stopping, especially a high dose of prednisone. The doctor said they could do that. So, from then on I had the chemo every month (over four hours) which would include the 100mg of the prednisone....then for the next four days I tapered off the prednisone. Made the world of difference! And I could feel my energy slowly drain as I tapered....but, that was OK....I did not get sick again.

I would also listen to "The Truth About Cancer"....and "Square One".....whatever your mother chooses for treatment....her diet will become vital to her healing and minimize side effects if she does choose the chemo. No advice was given to me when I had chemo as far as nutrition. Sad but true.

Don't worry too much about your mom....Love and laughter will see you all through this

Sincerely,

Sarah

[Hal2628 in reply to S-a-234]

Thanks for that info. I'll pass it all of this on to my mom. Glad to hear that you got through it all well,

Thanks

[oncloudnine]

Wait for the results of lab, Ct scan, and biopsy. And find a great oncologist who will take the time to discuss what you are, and what you will be going through.

[l-al]

That isn't unusual. After the biopsy she will be given a protocol, and depending on ct results he may or may not need radiation or chemo. Lymphoma is one of the most easy to treat. I was first diagnosed in 1994, am stage 3, in remission since 2005 and 81 yes old. Hope for the best!