From cancer diagnosis to surgery... How long did you have to wait?

Hi DH123,

Mines went like this:

July-found lump, ultrasound and biopsy done

Had ultrasound booked for August but didn’t want to wait so had it done privately. The doctor that done ultrasound told me to come along to his clinic the following day for the biopsy as an NHS patient.

August-Inconclusive result

September-Hemi-thyroidectomy

September-Cancer confirmed

October-Completion surgery

December-Radioactive Iodine 1st dose

January+April-Follow-ups

I’d say the timelines you’ve mentioned are pretty normal but do you have a head and neck nurse? If you’re feeling particularly worried I would give them a call and they can either put your mind at ease or they can try get you seen quicker.

R xx

Your story is very similar to mine. I was told verbally I had papillary thyroid cancer over the phone at the beginning of March. The doctor told me to keep April clear as I would near my thyroid removed and a central neck dissection. I was then shocked when I received an appointment to see the consultant on th 16th May. I went to see my GP and within a week I had a date for surgery and was operated on the 9th April.  The other thing I did was keep phoning the hospital to see if they had any cancellations with ththe consultant. They didn’t mind me doing this. Apparently it is a very slow growing cancer. 

I had my operation 2 weeks ago today and amazed how quickly I am almost back to normal. I still get tired and the back of my head aches when not properly supported.  

Hey there DH123,

Yup, sounds right.

One of the things I often tell people here is that one of the main things you're going to need when dealing with thyroid cancer is patience. 

There's never usually any need for speed or any urgency with thyroid cancer, as it's a bit of a sloth. So medically, they are happy to take their time. However mentally for the person with the thyroid cancer, that can sometimes be a bit of a struggle.

So distraction is the key. Clean out that cupboard you've been ignoring. Redecorate that room. Get in the garden and dig it all up and change it all around. Go out with friends. Get down the gym. Go to the spa. Get a massage. Go and have coffee and cake. Go sightseeing. Etc etc. Anything at all to take your mind off appointment dates and result waits etc.

There's also here to vent and chat, ask questions, whatever you need. Just shout anytime.

Lass

XX

Hi

My timeline is as follows:

Found Lump - September

Hospital Appointment, Biospy & ultrasound - End of October

Biospy result (inconclusive) - mid November

Surgery for lump and right side of thyroid removed - mid January

beginning of Feb - results from surgery (follicular thyroid cancer)

4th March - other side of my thyroid removed

It seems to have been a lengthy process - and the waiting is the worst!!  As Lass says keeping yourself distracted by keeping busy is good.  

x

There's a lot of publicity in the media about the fast treatment of cancers that sometimes makes us all expect that the moment the C word is mentioned, everything will magically race into action. With some of the more time-critical cancers that's definitely the case, but it does mean that for the more sluggish and less typically life-threatening cancers like ours, patients can be left worrying that something's gone wrong or that nobody is taking their cancer seriously enough.

Try not to stress (that's a dumb thing to say, I know) but a few weeks here or there is very unlikely to have significant impact. Because thyroid cancer is still rather rare, many hospitals don't have a lot of thyroid surgeons so you may have to wait for the one in your region to have a slot. 

Thanks for your reply. I'm due to see the ear nose and throat specialist on Friday who (as far as I understand it so far) will be the person that will perform the surgery. The feedback on here has been reassuring. I hope you are OK now. 

How did it go on Friday?

All ok and explained properly?

Lass

XX

Hi Lass

Sorry for not replying earlier but I have only just seen your reply... I am now almost 5 weeks post surgery (I had a total removal of the thyroid) and I am due to have the radioactive iodine treatment tomorrow. Hence my revisit to the forum. 

The surgery went well and I am still a little swollen but it wasn't as bad as I thought it would be. The exhaustion was tough though and I needed an extra week off work. I started feeling more normal last week. Just apprehensive now about tomorrow and whether or not I will be able to easily swallow the tablet but most of all I'm hating the thought of not seeing my family. 

I have a 7 year old who has been amazing but is finding this hard. It's the not knowing how long it will be till I am able to come home and to give her a cuddle. Tbh I am not worried so much about what treatment I need to have done, but seeing her so upset is heartbreaking. My poor Husband is having to deal with everything and I feel so helpless. 

I'll be glad when this week is out of the way. 

I hope you are keeping well. 

Heya, 

The tablet is the size of your normal paracetamol, so it shouldn't be an issue if you're OK with them? It's also more of a caplet than a tablet, so one of those plastic ones. 

Your husband should be able to come visit for an hour every 24, same with any other adults in the family who aren't pregnant.

Just remember to drink a minimum of 2 litres of water a day, take your 2 showers one with a full hair wash, and hopefully that hug will happen either at or before next weekend! And don't forget your sour sweets too, to help your salivary glands!

Shout if you need us, and try to enjoy the 'break'.

Lass

Xx

Hi there,

Just thought I'd let you know my timeline so you can have some reassurance.

Four years ago, I was having a post OP follow up for knee surgery when the ortho consultant noticed my thyroid was enlarged. He referred me to ENT where they found a large nodule (approx 25mm) which wasnt visible or able to be found by touch. I then had an ultrasound and it was deemed to be a non-suspicous looking nodule (which the vast majority are). The following years it was scanned regularly and wasnt growing but did start to show on the skin to touch. It was then decided to try a biopsy (fine needle aspiration) but it was deemed inconclusive (no enough tissue matter). The 2nd FNA was the same.

By procedure, they were then obliged to perform a diagnostic hemithyroidectomny in Nov 18. The biopsy result came back as papillary thyroid cancer (follicular variant), a 27mm and 1.5mm tumour. I had a completion in dec 18 which also revealed 2 more small tumours (approx 1mm). I had no capsular or vascular invasion. I had RAI therapy in mar 19 and my PET scan and thyrogloblin have both come back clear.

So the reality is that I had undiagnosed thyroid cancer for 4+years with no signs of spread. 

I've been told (foolishly) that "if had to pick a cancer...this is the one". Whilst this is a stupid thing to say, it is a sign of how slow this cancer works. Some of the more rare thyroid cancers are fast growing and do need a fast response but the vast majority are well differentiated thyroid cancers (papillary or follicular) and are slow growing.

Anyway, I hope everything goes well for you and you recover well. I've found the biggest battle with this has been in my head so try to not be too hard on yourself.

Mark x