What is a reasonable delay?

I found a golf ball size lump in my groin in early January.  At the time I was symptom free.  My doctor referred me to a surgeon right away, who wasted several months and did the biopsy on May 1st.  After several weeks of waiting for the biopsy results I have finally found out I have follicular lymphoma.  I've been chronically tired the last two months, and I have been waking up sweating.  In the past three weeks a second lymph node has grown even larger than the first.  So I am getting anxious about seeing an oncologist soon.  At this point I still don't have an appointment, and my surgeon indicated I can expect to wait a minimum of six more weeks.  At which point I can expect him/her to order tests to find out if I have cancer anywhere else before deciding on treatments.   Is this reasonable?

From what I read about follicular lymphoma if it is localized it is curable, but usually it is not localized.  If it is not localized sometimes they take a wait and see approach, other times treat it aggressively.  So if it is not localized their is really no rush.  However at this point there has not even been any testing to find out if it is localized.  What is a reasonable time frame to wait to meet with an oncologist test what stage I am at?

In my opinion there is "no reasonable time". You need your test completed  by your Dr,NO or seek another medical expert out. From the day I was told I had a brain tumor to surgery was 14 days. It was letting alot of people know and out sourcing to any one and every one. Be a pain in thier *^&%*% . It is not fair for them to let you know or suggest to wait. God Bless

Damon

The time frame your doctors are talking about is unacceptable.  I agree with the previous post.  Get them moving and irritate the %##)(* out of them.  This is YOUR life, fight to get the care you need.  You need to be persistent to receive timely care.

Good luck and remember it is YOUR life you are fighting for.. 

On 5/25/2009 docbillnet wrote:

I found a golf ball size lump in my groin in early January.  At the time I was symptom free.  My doctor referred me to a surgeon right away, who wasted several months and did the biopsy on May 1st.  After several weeks of waiting for the biopsy results I have finally found out I have follicular lymphoma.  I've been chronically tired the last two months, and I have been waking up sweating.  In the past three weeks a second lymph node has grown even larger than the first.  So I am getting anxious about seeing an oncologist soon.  At this point I still don't have an appointment, and my surgeon indicated I can expect to wait a minimum of six more weeks.  At which point I can expect him/her to order tests to find out if I have cancer anywhere else before deciding on treatments.   Is this reasonable?

From what I read about follicular lymphoma if it is localized it is curable, but usually it is not localized.  If it is not localized sometimes they take a wait and see approach, other times treat it aggressively.  So if it is not localized their is really no rush.  However at this point there has not even been any testing to find out if it is localized.  What is a reasonable time frame to wait to meet with an oncologist test what stage I am at?

 

I received my biopsy results 2 days after the surgery, which they said would take 2 weeks. I met my oncologist 3 days later. My dx was Stage 3, Grade 3 follicular lymphoma. Right away the onc. began all sorts of tests, did a bone marrow biopsy, and scheduled my port surgery. Everything happened so quickly within a matter of weeks. I began chemo exactly 1 month from all the surgeries and tests. I had Bexxar in Oct. 2008 and am now almost in remission. It has been a long, exhausting year since diagnosis. I hope to feel better by year's end. I will be thinking of you and praying that your cancer journey will entail watch and wait. If you need to talk, this is an awesome site. Everyone is so compassionate.

Best wishes,

Pam

My doctor managed to get me an appointment with the oncologist much sooner than expected.  Today I just had the CT scan to find out what stage I'm in, and Monday I will have a bone marrow biopsy.   Since I have grade 1 Follicular Lymphoma at least now I know there isn't a big rush.   The biggest danger in delaying, is if it is localized, radiation can cure it. 

My step mother let me use her login to a site for family doctors.   After reviewing the statistics, I concluded it was indeed a mistake for them to take so long to do the biopsy.  If it had been grade 3 it would have progressed fast enough, that by now radiation would be useless.  However, for grade 1 there is a 95% that if it was localized in January it is still localized today.

You are lucky it is stage 1.  That means it is localized and can be treated.  I was Stage IV when they found mine.  It meant that it was in my bone marrow as well as my whole body.  If yours is indolent you can leave it alone and just watch it.  Or you can treat it and hope it stays away.  Mine stayed away for 1 yr. can came back an aggressive grade 3. Now I cannot be treated and it is increasing every three months.  Unless they come up with a cure or God decides to heal me, I am going to die.

Kitty

On 6/18/2009 GrammaKitty wrote:

You are lucky it is stage 1.  That means it is localized and can be treated.  I was Stage IV when they found mine.  It meant that it was in my bone marrow as well as my whole body.  If yours is indolent you can leave it alone and just watch it.  Or you can treat it and hope it stays away.  Mine stayed away for 1 yr. can came back an aggressive grade 3. Now I cannot be treated and it is increasing every three months.  Unless they come up with a cure or God decides to heal me, I am going to die.

Kitty

I do not know the stage yet, just the grade.   I am
hopeful it is stage
I.  But why settle for guess work when I will know the answer next
week.   We all die.  Are you actively seeking a cure?  As in
volunteering for a research study or such?   If not, even if the
doctors find a cure you will not receive it.   However, even without
treatment, you still have a chance of spontaneous remission.  Doctors
can no determine how individual cases will progress, they can only
quote statistics.   So there is always hope.   That is why I say plan
for the worst, but live for the best. 

I will pray for you,

As an update, the oncologist was actually fairly quick and preferably the radiation once my stage was complete. I am not my last week of radiation treatments and I'm feeling very tired, however all signs of cancer or gone. Hopefully in a month or so I will be ready to return to work. If I'm really lucky I cancer will never return.

Regards,

Bill