To think you don’t “maybe” have lymphoma, youneither hsve it or you don’t?

[NotARegularPenguin]

I have a rather toxic close family member who I’ve been NC with for years.

She recently emailed me to say it looked like she had cancer. Lengthy email detailing various investigations, expressing general disappointment in me but inviting me step up and help with hospital transport for probably chemo. At this point she was still waiting for a diagnosis.

I ignored the email and have heard nothing since. I set a mutual friend on the case to find out what was happening. So a few weeks after the email friend came back to say family member has got shingles and “may also have lymphoma”. Apparantly the doctors aren’t sure.

How hard is it to get a lymphoma diagnosis? My dad died of lymphoma and from suspicion to diagnosis was less than 48 hours....he was an inpatient though.

Sorry to hear you are going through a tough time op but yes its possible for drs ro be 100% certain all the time. I know this because my dm went through it for 6 months being told maybe.

*to not be 100% certain that should say.

It can take a few tests to diagnose I think , blood , biopsy, different scans.

If you find a lump in your breast it 'may be' cancer until tests prove or disprove it.

Lymphoma is diagnosed through biopsy, as you know OP due to your sad experience with your dear dad.
So if they're sitting on bloodwork and going on those results alone, it will remain a maybe until a biopsy is done.

But the pity-trap IS lame.
'I'm disappointed in you as a person/now drive me to chemo out of pity for me'
It sucks that your family member might have cancer. But his/her approach is super lame.

Ask about the biopsy results and see what your relative comes back to you with.

If lymphoma is suspected, a biopsy will be taken of the site. It can take six weeks to get results.
I have direct experience as dc1 went through this a couple of years ago.

My dad was treated “as if it is lymphoma” as, given his age and the fact that he was a smoker it was the most likely. I think once it is apparent that it’s in more than one location maybe they can’t tell if it originated in the lymph nodes or spread there from elsewhere? Whatever the reason, it is possible to not know.

She had a biopsy in March. Early March.

Maybe she is still waiting for results then.

If then biopsy was in March, then there's no way they'd still be waiting for results three months later.

My Dhs biopsy for lymphoma results came back the next day - they took it under local in a fairly horitic way - he was an inpatient within 2 days.

myrelationshipisweird. Sorry about your dad. I think maybe the difference here is she hasn’t been told she’s got any form of cancer/lymphoma for sure. Isn’t having any treatment. Has just told this mutual friend that she “might” have lymphoma and the doctors aren’t sure.

I know she definitely had a biopsy in March as she talked about this in the email. No idea if the doctors are meant to be planning more tests. Or aren’t bothering. It’s all very odd.

Cancer isn't always an on/off diagnosis, it's not like being pregnant. It can be viewed as a spectrum condition when at a certain point of abnormality, it gets diagnosed. Myeloma is typically one of these- you can have paraproteins, but when that is categorised as "cancer" can be debated. Still may have chemo. Or may not. Same pathological process may be defined differently, and treated differently.

Also, something can look like any cancer, like lymphoma, and take a while to diagnosis. Just because your dad was diagnosed quickly doesn't mean everyone will be.

But, if you're NC, would a cancer diagnosis change that? Why cancer? Would heart failure? What about a bit of chronic kidney disease? This relative will only get older and sicker - surely you either decide to sort things out in some way, or are NC whatever comes? Or are you NC until a sufficiently bad diagnosis? I don't get it.

In march the results should be back long before now but still doesnt mean its not.

With my dm she had biopsies. Waited 3 weeks for results. Got the all clear then a few months later she was recalled after a multidisceplinery meeting and they said her biopsies appeared wrong and her symptoms were troublesome. So she had do have 4 more biopsies before they were certain it wasnt what they feared it was.

Lymphoma can be tough to pin down. I know a case where it was about 8 weeks from mass in chest found to actually diagnosed with Lymphoma. The characteristic mandibular lymph nodes are dead easy to biopsy, those deep in the chest less so - so it will depend where it is. The 8 weeks diagnosis wait was 1 endoscopy biopsy attempt. 1 ct guided attempt, bone marrow biopsy, mediasteinoscopy then keyhole surgery involving collapsing a lung to finally get a diagnostic sample...

Thanks everyone.

mytrainwaslate. Interesting post. Maybe she is telling the truth then.

To be honest whatever diagnosis she has makes no difference to whether or not I remain NC with her. If I knew she had 24 hours to live I wouldn’t go and see her. I suppose I just want to know if she’s still continuing with the abusive mind games or not.

Bone marrow biopsy was one of the biopsies she had done, she talked about having her bone drilled into it in the email in March. That appt apparantly she’d only gone for a chat with the consultant and wasn’t expecting any tests but he decided it was so urgent he spent two hours with her and did an unplanned bonemarrow biopsy.

The doctors thought I had lymphoma, from first Dr appt, to xray (shadows and patches) biopsies (which were inconclusive), medialstenoscopy (found the granulomas) to appointmènt to say it was Sarcoidosis and not lymphoma took 3 months.

I'm in remission from hodgkins lymphoma, I had a lump on my clavicle, I was told by ENT I either had lymphoma, an infection or a head and neck cancer, they suspected lymphoma more so and was put on a 2 week lymphoma pathway to diagnose or rule out which I believe is standard across NHS, I had a full biopsy but others I know had only a fine needle which are notorious for being "inconclusive" so she could well be accurate in what she says, I was under the suspected lymphoma stage for about 3 weeks if that helps

I suppose I just want to know if she’s still continuing with the abusive mind games or not. I think this is letting her in, then, and undoing the goodness of NC, if you're set on NC. You're not doing anybody any good giving this head room. I advise choosing to believe her, if your actions won't change either way, always choose the more charitable way of thinking. Think "how sad for her" (which it is, whether it's true or not), and put it out of your mind. If she is bad enough for you to feel the way you say, don't give it head room.

I was diagnosed with monoclonal gammopathy of undetermined sidnificance (MGUS) a couple of years ago. This can turn into multiple myeloma or lymphoma.
When the hematologist initially saw that something was wrong in my blood, it did take more blood and ultrasound examinations. Nowadays, I have these examinations once per year.
So to answer your question: it does take some examinations for a precise diagnosis.

Just to add sorry but I didn't have a bone marrow biopsy until after a positive PET scan which is standard NICE guidance x

My father had a bone marrow biopsy but he was already in hospital for tests, and IIRC they told him the day before that he'd be having it. Not sure that any of it rings true, but it makes no difference if you want to stay NC anyway.

Currently going through a lengthy process trying to rule out lymphoma with my baby.... So no... It can take ages.

Ah penguin were you the poster with the email from your mum to everyone re hospital transport etc?