15cm tumour - unclear pathology

Hi Glass Not Full,

Thanks for getting in touch.

My name is Paula and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I can see you have joined our sarcoma forum. I hope you’re finding it helpful to share your experiences with others.

I am sorry to hear about your pathology result on your 15cm tumour which has come back inconclusive. Unfortunately this sometimes happens and repeat biopsies and further tests may be required. Or your team may decide to proceed straight to surgery to remove the tumour as you mentioned.

The latter may give the pathologist a more conclusive answer. However in some cases they may not get the answers needed and if it’s a cancer the origin may remain unknown.

It’s understandable you’re frustrated about the results and I can imagine the impact it’s having on yourself. Especially as your results have been discussed in four multi-disciplinary meetings. It’s natural to feel this way when you don’t have a clear primary diagnosis and your team are unsure what the cause is at this stage.

Thank you for sending your blood results which include tumour markers.  As nurses on the support line, we are unable to make a diagnosis from results. However, your blood results are above the normal range. Whilst these results can be an indication of cancer, they can also be elevated due to other conditions.

Although you appear to be accepting of your pending diagnosis many people in a similar position share your fears and worries. We would suggest talking to your team or nurse specialist about your plan of care and the concerns you have. They are in an ideal position to talk through your concerns.

However, you might find it helpful to talk to one of our nurses on the support line. Sometimes giving us a call can help. It’s a free phone number on 0808 808 0000 and we are here 7 days a week, 8am-8pm or email us. 

I hope this information has been helpful, please don’t hesitate to get back in touch.

Ref: PW/JD

Hi Paula,

Thank you for your reply.

With those blood results, if it’s not cancer, what are the other illnesses that they could be please? None have been mentioned to me. Would they be linked to the tumour or not? For example once the tumour is removed will the bloods return to normal then?

Hi Glass Not Full

Thanks for getting back to us.

I can understand your concerns and the uncertainty your current results brings. It’s always difficult trying to understand blood test results when your diagnosis remains unclear.

Blood tests are common medical tests that help your team to check your general health and form a diagnosis. However, this alone is not enough to diagnose cancer. Other test such as biopsies and scans are also part of this process.

Many cancers cause a hormonal and metabolic change that can be detected by blood test know as tumour markers. These markers are proteins that can be found in blood, urine or body tissue and made by both healthy and cancer cells.

Some tumour markers are restricted to one type of cancer while others can be made by several types. In cases, some cancers don’t have any tumour markers at all. They can fluctuate and may change after treatment.

Tumour markers do have their weaknesses and non-cancerous conditions can also raise tumour markers. You may find this link helpful to look at some of those conditions.

As stated previously as a nurse I am unable to diagnosis and therefore it’s difficult to say if your tumour markers are linked to your 15cm tumour. We would suggest speaking to your team about your results who will be able to explain your current results to you.

I hope you find this information helpful.

Ref: PW/EMcL

Thanks Paula.

I will speak to my GP as I currently do not have a consultant or any team overseeing my care etc as no MDT meeting is proving conclusive.

Can I ask what this means please?

”There is a large heterogeneous cystic solid mass occupying the right flank measuring 15 x 8 x 13cm with internal haemorrhage and areas of diffusion restriction”

From my own research, this sounds more likely to be malignant which does align with what one doctor told me in hospital when he receive this MRI report but as I say, different doctors have subsequently said different things. No biopsies etc have been don?

Hi Glass Not Full

My name is Sarah one of the cancer information nurses. I can see you previously had responses from my colleague Paula and am glad this was helpful.

Scan results can be difficult to understand. Without the full picture of results from each of your tests, it is difficult as nurses on the support line to be specific about individual results.

Your GP would be the best person to speak with, as they should hopefully have access to all your results.

Feeling anxious about a diagnosis is natural and at this time it can be helpful to reach out for support from friends and family to talk things through. There are different ways to manage how you feel and everyone is different. You may find it helpful to call through to our support line to chat with one of our emotional support team.

If we can help with anything else, please don’t hesitate to get back in touch.

Best wishes,

Sarah

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref/ SB/FP