Still Waiting for Biopsy Results

Hi Everyone

Just wanted some advice if this is normal.  I had my Tongue Biopsy on the 19th May.  The Consultant said I would get the results in about 2 weeks.

On the same day, the 19th May the Hospital sent me a letter saying my next appointment would be on the 23rd June.  They also sent a letter to my Dr and to my Dentist on the 19th May saying that I would get the results in about 2 weeks

On Saturday 18th June I got a letter cancelling my appointment on the 23rd June and re scheduled it to the 30th June

I am currently seeing a Practice Nurse twice a week for another matter and I asked her if this was normal, i.e. scheduling a result appointment 5 weeks after the biopsy has taken place and she said IF it was Cancer, they would want to see me ASAP to discuss a treatment plan, however she advised me not to take that as gospel because she is not obviously involved in my case.

So am I being naïve thinking considering the time span that has passed since the 19th May and the fact that they have cancelled and re scheduled that "no news is good news"  or am I kidding myself?

Hope the above makes sense!

 

  • Hi Darceydoo

    I don't think anyone can give you assurance except the person holding onto the results.  It does seem like an inordinately long time for the biopsy results.  Some tests do take a few weeks to complete - they just can't be speeded up - but a tongue biopsy is unlikely to be one of those tests.

    Clearly waiting and not knowing increases your stress levels.   Maybe ring your consultant's secretary to ask what is going on?

    Peter
  • This is way too long to wait for the results of your biopsy Darceydoo, the longest you should wait is  3 weeks, it's normally shorter but because they seem to blame everything on covid. I totally agree with Peters reply as its not fair for you to wait this long so please phone your consultant team up and tell them you are unhappy with your treatment and lack of information. Best wishes.

                                                                                                  Chris 

    Its sometimes not easy but its worth it ! 

  • Hi Chris

    my consultant actually called today!  He informed me that I have a very small cancer on the side of my tongue

    He wants to order my MRI and CT scan today which takes about 2 weeks  I’m also seeing him this Friday morning to discuss things  he said I would need an operation

    Can anyone advise me what this entails?  I don't want to google this and scare myself even more 

    I have no idea what a small cancer is, is that good (so to speak) ?

    Any advice from people who have been through it would really appreciated 

  • Hi keep off google Friday no too  away head and neck cancers are graded on tumour size I was T2N2NM which means tumour size 2-4 cm n2 2 lymph nodes and nm no metastatic spread to other organs. So small could be T1 with no lymph nodes but we can’t diagnose. Just keep in mind head and neck cancers respond very well to treatment. Yours might just need surgical removal and no radiotherapy. Let us know what he says. But once again keep iff google. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Darcey 

    You really need to ask your consultant what it entails. None of us here can speculate on what a small cancer on the side of your tongue means. We might be alarming you or giving you false hope snd we would all be guessing. 
    I suggest you contact your clinical nurse specialist ( your CNS) and ask what is happening. It may be that your team doesn’t know either in which case it’s absolutely pants that you have to wait  

    Fingers crossed that things can be sorted easily 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Good evening Darceydoo, i expect he means its a small tumour and will involve surgery to remove it, please do not go on google as it will make matters worse. The smaller tumour the easier it is to operate and remove, i had 3 surgeries to do with head and neck cancer and they are all different procedures depending on what is involved i.e skin grafts but they don't know the extent until they actually do the operation. Try not to worry as you will be in very good hands with good recovery and cure rates. The scans will help the consultant see more clearly what is happening and what they intend to do. You will have a fairly busy time from now on with appointments, scans and tests so take things a day at a time, all the best for your appointment on Friday, take care. 

                                                                                               Chris x

    Its sometimes not easy but its worth it ! 

  • Thank you all for your replies.  I will update after I have seen him on Friday.  He does need the scans obviously to see if it has spread but I am clinging on to his words saying it is a very small cancer!  My head is all over the place as I have so much planned in the next couple of months and my daughter  is studying for her GCSE's ( she does not know yet )  so I will just wait for Friday x  

  • Sounds like when they found a tumour in my tongue.  Turned out too small to see on the scans and it was only visual scoping and a biopsy that found it.  They reckon that it was around the size of a grain of rice!  Mind you by that stage we had been chasing the tumour for over a year looking for it.  It was not a base of tongue, but slightly further forwards so would not need robotic surgery.  They were going to use TOLS which is a laser in the surgeons hands as opposed to TORS which is the robot doing the work of the surgeon.

    Their plan was to remove an area of tongue around 5cm square.  They were not going to reconstruct as they did not feel that there would be significant impediment.  They were suggesting around 3 nights in hospital, maybe with an NG feeding tube if my swallow was not good post surgery.

    In the end they abandoned the surgery part way through as they was no sign of the tumour.  So I just got stitched up and sent home. 

    Every time they have had a go at my tongue I have found it to be relatively pain free and rapid to heal.  Clearly not completing the partial glossectomy I can't say what your recovery will potentially be like.

    The fact that the cancer is small makes it no less dangerous.  Mine had already spread to my lymph nodes.  I am a rather strange case that does not follow the normal pathway in so much that they believe my immune system is effectively dealing with the tumours; hence knowing I've got cancer, but not finding the primary site as it keeps getting destroyed by the body - and this is exactly what our immune system is supposed to do except occasionally it gets overwhelmed and we get a cancer or a cold or covid etc.

    At a personal level I had already agreed with my clinical team that if we got good clear margins on my tongue then I would not progress onto radiotherapy at this stage, instead keeping that in reserve in case I had a further reoccurrence.  Remember that is a very personal decision and should be guided by what you want and what the clinical evidence says.

    There will be side effects from any cancer treatment.  Surgery can destroy taste permanently (through cutting the nerves in the tongue) and in my case I am suffering a lack of saliva like many radiotherapy patients do (that is a result of neck dissections rather than the tongue).  It is not an easy route, but whatever route you take there is a very high chance of a total cure. 

    Peter
  • Hi Peter

    Thank you so much.  My "lump" on the side of my tongue is about 0.5cm wide but 5cm square looks like a huge area to remove!  Did you lose all of your taste or only in that area?   I won't know the facts until I see the Consultant on Friday and obviously it will be a pre scan meeting so he won't really know my potential treatment plan until I do have the scans

    How long did you wait for the scan results and how quickly did you have surgery afterwards?

  • Hi Darcy. Have you been told that the surgeon is going to excuse a 5cm square of your tongue? 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm