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Newly Diognosed Indolent Non Hodgkins

Hello,

I'm 55 and just diagnosed with what my oncologist is calling indolent non hodgkins.  I recently had rotator cuff surgery and, because my MRI came back with unusual findings in my bone marrow, my doctor did a bone biopsy during the rotator surgery which came back low grade b class lymphoma.

My oncologist examied me and said that from all scans it appears to be just in the arm bone marrow but he did order a PET scan, which I had yesterday.  He said that was the only way he could tell if it had spread to a lymph node or organ.

My oncologist said that most likely he is leaning towards the "wait & watch" approach, since my symptoms have receded and treatment would just make me feel sick and the long term outcome would be the same?

Does this make any sense to anyone?  Has anyone else been told the same thing?

At this point I'm not sure what if anything I should do.  The thought of doing nothing when I have cancer in my body seems strange but it might be the norm?

Kathy in Seattle

Comments

  • lindary
    lindary Member Posts: 710
    Not Unusual

    From what I've read here and other posting I that the "wait and see" approach is not that unusual with lymphoma. For me it was not the case but there are others who have been doing the "wait and see" for decades.

    For me my lymphoma had affect my one lung (pluersy), thyroid (meds adjusted) and caused an enlarged node (tumor) in my abdomen. There is no way to tell how long I have had lymphoma. I've asked my oncologist if it is possible that it had been in my system for 10 years or more and just then started casuing problems. She said anything is possible but there is no way to tell. 

    If you don't feel comfortable with what your oncologist is telling you get a second opinion. It never hurts.

  • Simon24
    Simon24 Member Posts: 45
    Waiting and Watching

    Hi Kathy,

        The PET scan should give you and your oncologist much more information.  My husband's NHL is agressive and he had to start treatment immediately, but we have a friend with multiple myeloma who has been "waiting and watching" for several years.  Her oncologist carefully monitors her condition, but it is still smoldering so she goes on with her life as usual.  My husband's bone marrow test revealed a slight amount of CLL and he may never have known it was there if he hadn't been having all the diagnostic tests done before starting treatment for his diffuse large b cell NHL.  I sincerely hope that your PET scan will reveal that all that is needed is for you to "wait and watch".    Simone

  • Welcome

    Kathy,

    While active survellance, or "watch and wait" is not the norm with lymphoma, it is at times recommended by oncologists. Of the hundreds and hundred of people who write here, I doubt 2% are on a watch and wait protocol. One reason is that more NHLs are aggressive than indolent. Patients in relapse seem to have it recommended more often than patients facing first-line treatment.

    I had a secondary cancer (in the prostate), and prostate cancer, which usually is indolent, and is usually diagnosed in older men (average age of 68 at diagnosis), is very frequently monitored in an active survellance protocol.  The explicit (stated) rational there is, "If a guy is already 70, and the disease is hardly gorwing at a detectable rate, why do harsh treatments when his life-expectanncy is not so long anyway ?"  In a younger guy, of course, this line of reasoning more-or-less falls apart. I was 58 at diagnosis (of prostate cancer), and never considered active survellance for a second.

    The PET results will give you more information regarding what is suitable for you at this time.  It does seem probable that you have minimal disease, and can take your time and figure out what is best for yourself.  I had large nodes all over (neck to pelvic region, and side-to-side), but it was over two months between the time I was diagnosed and when treatment began, and my oncologist said that the wait was irrelevant.  Only in aggressive lymphomas that are late stage do patients have to be rushed into treatment.

    Regarding the doctor's observation that "the medicine would just make you sick." Well, actually, the purpose of the medicines is to make you well, at least in the end. But it will be unpleasant, whether you have treatment now, or later.  But treatment is better tolerated the younger the patient is. 

    Waiting is like the beer commercial:  "Know when to say when." But when is that ?   I have never been a watchful waiting fan; my two cents.

    I hope you share what you learn from the scan, and I hope it is good news.

    max

     

  • OS (overall survival)

    i was diagnosed with indolent stage IV fnhl with extensive bone marrow involvement (26%).i was told that there is little statistical benefit to early treatment when looking at total life expectancy. My advice is don't get treatment till its really needed Then take the mildest treatment that will do the job.  I opted, against advice from a major institute in Houston, to get Rituxan only vs the more harsh RCHOP treatments. I made that decision because no major organ was immediately threatened. My theory is if I only have X number of years why suffer through harsh treatments before they are absolutely necessary? I really believe I lived with lymphoma 10 years before I even became aware of having it. Of course I am not a Dr. Do whatever you and your doctors decide together. Be sure to get multiple opinions. Best of luck.

    Also, ask if the lymphoma is only in your shoulder, why not consider radiation as a possible cure? Stage I indolent fnhl lymphoma limited to a single location can frequently be cured by radiation. Most other treatments for Stage II or greater ( multiple locations) are not considered cures. 

     

  • girliefighter
    girliefighter Member Posts: 232
    Normal

    I also have a form of non-hodgkins that is indolent, mine is follicular lymphoma. It is quite standard for them to do the watch and wait for this, as indolent means slow growing and not aggressive. Most people don't know that you can become maxed out on chemo drugs and then when it is really needed you are not able to be treated with frontline drugs. I just finished almost 3 years of chemo with maintenance treatments andd it was the greatest thing ever to be done. I know it seems un-nerving to have Cancer in you and know that nothing is being done about it, but try to just trust your Dr., you can always get a second opinion as well. You can learn so much from this stuff from anyone on this site, research and do some digging, become your own advocate and a expert on your type of cancer.

    xxxooo

    Carie

  • katcat55
    katcat55 Member Posts: 3
    PET scan results

    Well I had my appointment with the Onco and we went over the results of my PET scan.  Initially from the early scans, mri, bone, and ct, they thought I just had the lymphoma in the arm bone, humerus but the PET scan showed it was in all of my lymph nodes, the humerus and the largest spot was actually in my right thigh, femur.  The oncol said I have stage IV follicular lymphoma.  He sent me for a more detailed MRI of my thigh and I see him tomorrow to find out if he wants to start any treatment.

    At this point I don't know what to think.  There is so much information out there it's really overwhelming.  To hear the doctor say Stage IV cancer was a shock, I didn't expect that.  I feel like my life is on pause, I'm not sure what I'm suppose to do.

     

     

     

  • littlemac
    littlemac Member Posts: 22
    katcat55 said:

    PET scan results

    Well I had my appointment with the Onco and we went over the results of my PET scan.  Initially from the early scans, mri, bone, and ct, they thought I just had the lymphoma in the arm bone, humerus but the PET scan showed it was in all of my lymph nodes, the humerus and the largest spot was actually in my right thigh, femur.  The oncol said I have stage IV follicular lymphoma.  He sent me for a more detailed MRI of my thigh and I see him tomorrow to find out if he wants to start any treatment.

    At this point I don't know what to think.  There is so much information out there it's really overwhelming.  To hear the doctor say Stage IV cancer was a shock, I didn't expect that.  I feel like my life is on pause, I'm not sure what I'm suppose to do.

     

     

     

    Hang in there.  Trust your

    Hang in there.  Trust your doctor, but find out about options.  I was diagnosed with Stage IV FL also at 47 ,last year. I went through 4 rounds of Chemo and am now Maintenece  Treatments with Rituximab. It all happens fast.  I felt that learning about my disease gave me something to focus on.  Someone on this network suggested that information is best found in medical papers, not just out there on the internet. I hope you have a good doctor that you feel comforatble with and a good support system. The people on this network have answered questions for me along the way.  They have been through it and I have valued their support, knowledge and understaning.  It looks like many of the people that reached out to answer my concerns, have also reached out to you.  I am wishing good thoughts & praying for you.  I hope your shoulder is also healing well.

  • lindary
    lindary Member Posts: 710
    katcat55 said:

    PET scan results

    Well I had my appointment with the Onco and we went over the results of my PET scan.  Initially from the early scans, mri, bone, and ct, they thought I just had the lymphoma in the arm bone, humerus but the PET scan showed it was in all of my lymph nodes, the humerus and the largest spot was actually in my right thigh, femur.  The oncol said I have stage IV follicular lymphoma.  He sent me for a more detailed MRI of my thigh and I see him tomorrow to find out if he wants to start any treatment.

    At this point I don't know what to think.  There is so much information out there it's really overwhelming.  To hear the doctor say Stage IV cancer was a shock, I didn't expect that.  I feel like my life is on pause, I'm not sure what I'm suppose to do.

     

     

     

    Cancer Stage

    One thing I've learned is that stages for the blood cancers is not the same as stages for the cancers that occur in an organ. I too was told I had stage 4 follicular lymphoma a year ago. Think about it, the blood cancers are in the blood stream or lymph system. Both are systems that move fluids through our bodies. Something bad gets into it that something can travel through our bodies pretty quick. As long as it is not in any organ, I wouldn't  get too worried about the stage 4 classification. 

    There is a lot of research going on for the various types of lymphoma. When I searched the interent I tended to only read articles written/posted in the last 2 years. I felt that older writings were too old. You will read some depressing things but I found more positive thing than negative. Good luck.

     

  • Jazmin2
    Jazmin2 Member Posts: 18
    Wait and Watch since September 2015 - Stage 3 - NLPHL

    I am on a wait and watch also. It is very common these days that doctors give you chemo when absoultely necessary. I was confused like you too and went to top hospitals in USA and got the same opinion from majority. Some doctors were ready for Chemo also but I understand that Chemo will destroy the quality of life. So please get a second opinion and trust your gut feelings. 

     

     

  • blondie48
    blondie48 Member Posts: 1
    treatment

    I myself am 4 years 3 months out of breast cancer diagnosis. i wish you the best. Im older , but impatient. wait n watch would not have been my style.

    Q. is a chemo port indicated in treatment of smzl when spleenectomy is not chosen and when a secondary blood cancer needs addressing? hairy cell lymphoma? thanks for any info for a friend...

  • OO7
    OO7 Member Posts: 281
    katcat55 said:

    PET scan results

    Well I had my appointment with the Onco and we went over the results of my PET scan.  Initially from the early scans, mri, bone, and ct, they thought I just had the lymphoma in the arm bone, humerus but the PET scan showed it was in all of my lymph nodes, the humerus and the largest spot was actually in my right thigh, femur.  The oncol said I have stage IV follicular lymphoma.  He sent me for a more detailed MRI of my thigh and I see him tomorrow to find out if he wants to start any treatment.

    At this point I don't know what to think.  There is so much information out there it's really overwhelming.  To hear the doctor say Stage IV cancer was a shock, I didn't expect that.  I feel like my life is on pause, I'm not sure what I'm suppose to do.

     

     

     

    I understand

    Undoubtably you're scared, confused and overwhelmed.  I know, I'm stage IV follicular myself but I don't have any bone involvement. I was diagnosed April 2014, treated with Rituxin and obtained a great result.  I only treated it because I was symptomatic, night sweats, extreme fatigue and my one lymph node was growing and running out of space therefore hurting me.

     I chose not to do CHOP.  R CHOP is a typical treatment for someone like me.  I have two differnet doctors, one at Dana Farber in Boston and one in my hometown.  Long story.  Boston STRONGLY  recommended to hold off on chemo drugs because I was otherwise in great shape and had a low burden of disease.  Plus save any chemo drugs for later down the road if I were to ever need them.  Which I don't plan on needing them.  Just a little personal positivity, my apologies!

    Think of it this way, chemo drugs are difficult and can change the quality of your life.  The trend is to wait until needed and really kill the ugly beast when it's problematic.

    I hope and pray you're in better place with all this and your doctor is on top of it.  I'm a big fan of second opinions.  I also have to trust my gut and like the doctor enough to work with him.  In the very beginning my brain was numb, most likely paralyzed.  Take deep long breaths and breath easy.

     Sending you  positivity, clarity and Health.

    all my best