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Thread: How long does a diagnosis (or ruling out) for cancer usually take?

  1. #1
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    Hodgkin's diagnosis confirmed

    I read the sticky...

    My wife, 32 year old female, about 2 months postpartum from our third child, has had a swollen lymph node since about the week after our third child was born, about 2 weeks ago another lymph node on the same side of her neck has become swollen. She initially thought it was her thyroid so didn't have it checked out since thyroid issues are so common after childbirth. At her OB appointment 3 weeks ago her OB said it's a lymph node and she should be seen by her PCP. About 2 weeks ago my wife's PCP checked it out and ordered a complete blood panel to test for pretty much everything as well as check her thyroid levels. Everything came back negative or normal except for her white blood cell count was abnormally high. Her PCP then ordered an ultrasound which was done last monday and said she would likely refer her to a hematologist depending on the results, but wanted that done first. We're awaiting the ultrasound results today....

    My wife's other symptoms include:
    A chronic cough that started about 3-4 weeks ago
    She had been experiencing night sweats, but those have gone away
    Tiredness/Fatigue, but she's breastfeeding and with a newborn that is to be expected.
    General soreness and achiness throughout the day
    She hasn't had any recent colds or other illnesses/infections

    Her mother had both hodgkins and non-hodgkins lymphoma but has been in remission for 10 years now.

    I'm just wondering how long the diagnosis process should take, and if her doctor is moving fast enough? It's been 3 weeks now since it was first noticed by a doctor and we're still waiting to get a referral. As we're waiting she has developed a second swollen lymph node and is now experiencing pain as the intial swollen node seems to be growing larger.

    Thanks for any advice or peace of mind!
    Last edited by Vtomars; 07-30-2019 at 03:30 PM. Reason: Updated to confirm DX

  2. #2
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    Quote Originally Posted by Vtomars View Post
    I read the sticky...

    My wife, 32 year old female, about 2 months postpartum from our third child, has had a swollen lymph node since about the week after our third child was born, about 2 weeks ago another lymph node on the same side of her neck has become swollen. She initially thought it was her thyroid so didn't have it checked out since thyroid issues are so common after childbirth. At her OB appointment 3 weeks ago her OB said it's a lymph node and she should be seen by her PCP. About 2 weeks ago my wife's PCP checked it out and ordered a complete blood panel to test for pretty much everything as well as check her thyroid levels. Everything came back negative or normal except for her white blood cell count was abnormally high. Her PCP then ordered an ultrasound which was done last monday and said she would likely refer her to a hematologist depending on the results, but wanted that done first. We're awaiting the ultrasound results today....

    My wife's other symptoms include:
    A chronic cough that started about 3-4 weeks ago
    She had been experiencing night sweats, but those have gone away
    Tiredness/Fatigue, but she's breastfeeding and with a newborn that is to be expected.
    General soreness and achiness throughout the day
    She hasn't had any recent colds or other illnesses/infections

    Her mother had both hodgkins and non-hodgkins lymphoma but has been in remission for 10 years now.

    I'm just wondering how long the diagnosis process should take, and if her doctor is moving fast enough? It's been 3 weeks now since it was first noticed by a doctor and we're still waiting to get a referral. As we're waiting she has developed a second swollen lymph node and is now experiencing pain as the intial swollen node seems to be growing larger.

    Thanks for any advice or peace of mind!
    My experience has taken months. There is a lot of waiting, especially when you get good results (which is good!). If the ultrasound looks good the doc might suggest waiting and seeing if the nodes improves on their own. If it looks suspicious she might be forwarded to the next doctor which may take some time to get an appointment followed by more waiting for whatever tests that new doctors wants run. Then waiting for results. It's a lot, and most likely there is nothing wrong and this is all just a (wise) precaution.

  3. #3
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    So what was the update from the ultrasound has it led to a referral to a haematologist? also just in case its your mother in laws cancer related incidents that is driving this worry, try to manage that as, as of today no one has ever shown HL or NHL to be hereditary. sadly you have to go with the system and only an excision biopsy will rule lymphoma in or out, in some cases a core biopsy may work but the excision is the most reliable and a pet scan would lead them to the node or mass to excise.

    hope this helps
    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #4
    Moderator Top User IndyLou's Avatar
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    Hello-

    Based on my experience, I was probably fully dosed within a month. You can read my signature for the details.

    Generally speaking, your PCP (or whomever you initially present your symptoms to) will try to account for your full medical history, in addition to your demographics, before making a diagnosis. In your wife's case, she's fairly young. A swollen lymph node by itself, is not a remarkable thing. The high white blood cell count suggests some kind of infection, but that has to be weighed with everything else.

    Given my age at the time, my PCP took a CBC, gave me orders for a CT-scan, and also referred me to an ENT. Concurrent with the visit to the ENT, my CBC and scan turned out to be inconclusive. The ENT performed an endoscopy, which also turned out negative, so he referred me to a pathologist for an FNA. It was the results from that FNA that pointed to my cancer diagnosis...again, probably just inside a month's time.

    I know you feel that things must be rushed, but truthfully, not much will change whether you find out tomorrow, two weeks, or a month from now. Just continue to work with your doctors, and press them for follow-ups.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  5. #5
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    Just an update:

    My wife was referred to a hematologist by her PCP. The hematologist called my wife before her scheduled appointment and told her that she actually needs to see an ENT because "it could be one of 70,000 conditions or illnesses that he doesn't treat". The hematologist also questioned the PCPs reasoning to perform an ultrasound, as they just show that there are indeed lumps which we already know. He said that her PCP should have ordered a CT scan right away then referred to an ENT. That's neither here nor there though.

    For what it's worth The Hematologist seemed very squared away and very concerned. He was able to get my wife a CT scan within an hour of talking with her over the phone, as well as a referral to an ENT. Right now we're waiting the ENTs review of the CT scan. The ENT didn't even meet with my wife, she said she would review the CT scan and then call us with the results then go from there.

    A more concerning update is that my wife has now began coughing up tiny bits of blood mixed in with her phlegm so that's alarming. Her cough has been pretty bad so I'm hopeful that is just due to irritation from the coughing. We had the CT scan on Wednesday and were hoping to hear back from the ENT yesterday. Hopeful they call back before the weekend now.

  6. #6
    Moderator Top User IndyLou's Avatar
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    Thanks for the update. I do want to prepare you for a possibility with the CT scan. In many cases, a CT scan alone cannot tell if a "mass" is cancerous. Only a biopsy of the mass can do that. It's quite possible that the ENT will say, "the scan is inconclusive." If they're still concerned though, they should recommend the biopsy. If they don't, you may want to bring that up.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  7. #7
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    Quote Originally Posted by IndyLou View Post
    Thanks for the update. I do want to prepare you for a possibility with the CT scan. In many cases, a CT scan alone cannot tell if a "mass" is cancerous. Only a biopsy of the mass can do that. It's quite possible that the ENT will say, "the scan is inconclusive." If they're still concerned though, they should recommend the biopsy. If they don't, you may want to bring that up.
    Well the CT scan results did come back today and are indicative of lymphoma. She actually has three swollen lymph nodes the largest of which is 5CM.

    The CT scan also picked up the upper part of her lungs and show possibly a large mass. It's uncertain what that is since the CT scan wasn't focused there. It's possible that it is cancer that has spread there since she's been coughing blood now.

    She has a biopsy scheduled next and her medical team just suggested going right to a full body MRI instead of another CT scan as they can rule everything out right away instead multiple CT scans. I'm not sure if that sounds accurate We're awaiting authorization from our insurance for the MRI.

    I'll keep this updated as the week rolls on. Her mother had lymphoma so we've got a good support group going already.

  8. #8
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    Whilst the CT scan was more about the neck (I assume from your first post) its probable she has had a neck and chest scan or they may have gone down to the abdomen, worth asking what was done, as the results will show all areas of concern not just those nodes in the neck they were investigating. They will now do an excision biopsy and that will go off to the path lab and it can take a week plus to get results back, as for a full body scan they may be suggesting an MRI rather than a PET scan due to your wife recent birth, again ask why one rather than the other and what they think they are either looking for or expect to find.
    If she does have lymphoma, be reassured that most types respond well to treatment and staging only informs treatment plans and a stage 4 blood cancer is very different to a stage 4 solid tumour cancer.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  9. #9
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    Quote Originally Posted by johnr View Post
    Whilst the CT scan was more about the neck (I assume from your first post) its probable she has had a neck and chest scan or they may have gone down to the abdomen, worth asking what was done, as the results will show all areas of concern not just those nodes in the neck they were investigating. They will now do an excision biopsy and that will go off to the path lab and it can take a week plus to get results back, as for a full body scan they may be suggesting an MRI rather than a PET scan due to your wife recent birth, again ask why one rather than the other and what they think they are either looking for or expect to find.
    If she does have lymphoma, be reassured that most types respond well to treatment and staging only informs treatment plans and a stage 4 blood cancer is very different to a stage 4 solid tumour cancer.
    Thanks for the advice. Her original CT scan was just of the head and neck but the top of her chest was also in that scan and there is a "large area of concern" picked up on the top of her lungs. It wasn't of the whole lungs so they want to look at that area closely as well as other areas of the body I assume.

    We haven't had any scans yet so we'll ask on Monday what the best type of scan will be. As of now they wanted to do an MRI and I'm not 100% sure why, obviously being the weekend we won't get answers.

    I'm hopeful that this isn't lung cancer that has spread to her lymph nodes vs lymphoma that spread to her lungs.

    We'll have to ask what the possibilities are. I'm not sure if a CT scan can even differentiate between types of cancer in the lymph nodes. She's 32 and never smoked and has worked in office settings her whole career so obviously lung cancer would be extremely unlikely. She has had a cough for a while now before her lymph nodes became swollen. We'll keep this thread updated I suppose and move it to the appropriate thread when we find out more.

    Thanks everyone for the reassurances and advice.

  10. #10
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    Hi again, at this stage it could be anything or nothing and whilst we can second guess, that's all it would be a guess, the scan will give them a clearer picture and the are a number of non cancerous reasons why things show up, along with mediastinal types of lymphoma should it prove to be lymphoma. As hard as it is it is a waiting game which is the hardest part and that is closely followed by the mental noise created in your head.

    Fingers crossed you fears are not realised.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

 

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