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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Partial cancer diagnosis

2 replies

ILoveMoonDaisies · 18/06/2024 16:06

I wonder if there are any medically trained people here on MN who could shed some light on this... I'm turning it over and over in my mind and can't make sense of it....My DH has been under investigation for possible cancer for the past 9 months. At last, just over a week ago, we saw the oncologist together for his diagnosis. We were told it's thought to be a rare kind of soft tissue or spinal bone sarcoma. However, they can't identify the sub-type and are therefore seeking an opinion from another specialist hospital. We were told this could take a further 4-5 weeks... huge sigh😔 My DH has a lot of pain and is pretty immobile. What I can't understand so far is the consultant said it's "treatable but not curable" - they won't be doing spinal surgery to remove the tumour. Radiotherapy is proposed. My DH suggested this is because it's something he can live with that's controllable and the consultant nodded.?? My DH is always the optimist but I was worried. I didn't like to ask more when my DH didn't pursue the point and the consultant didn't offer further information. My DH asked if it's probably low grade as he's quite stable, although struggles with walking.?? The consultant agreed and put this in her follow up letter. But I can't understand how something "low grade" has already been labelled incurable even though they haven't decided on the exact type of cancer yet . Surely it's best to operate before the cancer spreads (it's already affected a vertabra and there's a pelvic fracture). It's so hard being drip fed information and now having to wait weeks before a treatment plan can be discussed and this just doesn't make sense to me!!

OP posts:
meganna · 18/06/2024 16:18

I'm sorry that you're left in limbo with a potentially worrying diagnosis.

Some cancers have spread by the time they've been found, some also appear in places where the risk of removing the tumour is greater than just leaving it be and trying to target treatment to keep it at bay. I don't claim to be an expert at all but lots of cancers are now deemed as a disease you die with, not die off. As treatments have got so much better over the years and people can live a long time with a good quality of life despite not being "cured" as such.

The wait must be so frustrating, I hope the results come back quicker than you've been told and a treatment plan can be worked out!

ILoveMoonDaisies · 18/06/2024 17:02

Thanks for your reply @meganna. I've been wondering if surgery would be too difficult but wish the consultant had explained that if that was the case. 🤔I felt she said very little really - there was a lot of chit chat to ease the mood. In hindsight, I should have asked why it wasn't "curable" but didn't want to worry my DH and I was also feeling very anxious and trying to read the consultant's body language (instead of asking questions 🙄). But, I agree cancer treatments are much better now and things can be kept at bay. I just didn't think this was usual for a sarcoma. My DH's quality of life is currently pretty poor but if they are able to bring down his pain levels that is something to hold onto. I fear we're going to have to wait at least a month for further details as everything so far has taken longer than estimated 😔

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