Biopsy results

[Ianhick]

Happy New Year, to everyone, let's hope its a good one health wise. So saw my surgeon, actually one of his junior Dr's, yesterday and the second opinion tests on my tumour biopsy showed no malignant cells and benign. My wife was so elated, however I was a bit flat as I had my elation from first results in November. I haven't been discharged as yet, needs to be discussed at MDT meeting for that. Hopefully will hear in next couple of weeks for that.

They are going to refer me to a Sarcoma MDT though. Its because they couldn't identify what caused the tumour. Had a look at Sarcoma UK site and it seems a bit muddled, so I'm not sure what to expect, though I'm hoping it's just precautionary. Has anybody else had this sort of referral?

Ian

[mishamilo53]

hi Ian , great news about your second opinion tests …. You must be so relieved … I don’t know about the sarcoma referral but it sounds like your team are just being very thorough …. I hope your health just goes from strength to strength in this new year . Elly x

[Ianhick in reply to mishamilo53]

Hi Elly. Thank you. I think you're right about them being thorough. I had another look at the Sarcoma site and there are a few things that seem similar, so as you say I think it's a case of being thorough. Because it's not lung cancer per se, I can see why they'd refer me. I had the surgeon's letter this morning, so expecting MDT to confirm discharge, which is great.

How is your treatment going?

Ian

[mishamilo53 in reply to Ianhick]

all finished now Ian , review meeting yesterday post treatment scan shows my tumour responding and reducing to the treatment and said it was a very early scan so they consider this a good result and that the three month scan would be the next important one ….I’m starting immunotherapy on the 16/1 as a back up treatment too x

[Ianhick in reply to mishamilo53]

That's great about your interloper shrinking. Hopefully that continues and the immunotherapy helps too.Take care 🥰

[mishamilo53 in reply to Ianhick]

thanks love you too x

[JanetteR57]

Understand your reticence rather than relief and no doubt confusion after looking after Sarcoma UK site. I work with the founder of Sarcoma UK and know there are many many different types of sarcoma with many different types of treatment. I know also that he and other sarcoma patients sometimes develop spread to the lungs and are treated as if the original tumour (unless surgery or ablation (Radiotherapy) possible

I'm intrigued if it was benign why they think it's sarcoma (malignant) - maybe worth asking why they're referring it on.

Many tumours in our bodies turn out to be benign but they're seldom referred onto other departments - if they're clinically harmless, they're not further investigated as the health service isn't always set up to investigate causes of anything benign but to treat sick people - despite it being called a health service, it's really an illness service. In the same way we refer to mental health but mean mental ill health, our language can at times be clumsy.

If you have a lung nurse or secretary's number for the consultant, you could always contact them and ask the question rather than worrying or guessing why. In the meantime, I'd take the news given and try and relax as worrying about the 'what if' often creates physical symptoms through anxiety and doesn't change anything - better to deal with the 'what is' when known. good luck.

[Ianhick in reply to JanetteR57]

I'm not really worried about the referral or reading much into it. I know I've been really lucky in the tumour being benign, especially given its size and rate of growth and that it had started to attach itself to my chest wall. Reading the Sarcoma UK site, there are tumours that are benign which are still classified as a Sarcoma. I will wait for the Sarcoma MDT to decide what, if any, further treatment or tests are required. In the meantime I will make the most of life.

I have spoken to the lung cancer nurse, but given its not her specialist area there's not much more she can tell me. The same for the consultant.

Ian

[JanetteR57]

a good approach - these specialties are now so complex - even within a discipline not everyone is up to date with other aspects of treatment other than the one they specialise in . good luck.