Confused

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Hello, 

My Father has stage 3 cancer of the hypopharanx and in his lympnodes. He has gone through radiotherapy (couldn’t cope with chemo). 

Treatment all finished and he has coped well. We have now had the PET scan to see it has worked and now feeling really confused. 

The cancer is still showing in the lympnodes and they have recommended neck dissection. The confusing part is they are saying that the PET scan is showing uptake in his larynx but biopsies are clear. He’s now just had another biopsy in the hope they can hit the spot. 

The consultant is now tentatively suggesting ‘monitoring’ what does this mean? Surely the cancer is there and will rear it’s ugly head or a total laryngotomy (Dad doesn’t want to have the op)

I feel like we’re in a limited club as I can’t find any stories of cancer or the hypopharanx and we know the stats are scary. Has anyone else had a similar story at this stage? The waiting is becoming unbearable and of course after treatment and feeling well at the minute Dad would like to try to enjoy his life. 

Thanks all

  • Hi and welcome to our "club".  Sorry you have had to find us, but we're all here to help.

    I don't have any experience of what your father has had, although I can totally understand how your and your Dad feel as they have chased my cancer around my neck for nearly 2 years. 

    I have had 2 neck dissections and they are relatively easy to deal with and fairly quick to recover from (in my case).  

    I am on 6 weekly monitoring myself having chased this cancer around.  It can be quite mentally wearing going to each examination not knowing for sure what will come out of it.  BUT you have to do it, so that if the cancer does really re-appear they can deal with it quickly. 

    I am guessing that the PET scan shows some activity but they have no hard evidence that the activity is actually cancer at this stage.    I have been there!  Some of my PET scans have shown a glow, but it was another infection.

    My advice is get out and enjoy life.  You can't wait for the cancer to make itself known - it may never actually come back.  It is difficult planning life around the frequent checks, and maybe travel abroad is not something that can be on the list at the moment.  However, there is lots to do in the meantime.  BTW 16 days after my first neck dissection I was on a plane to the USA so you can enjoy life!

    Peter
    See my profile for more details of my convoluted journey
  • Thankyou so much for this - I really appreciate the response. I suppose we feel like we’re at a pivotal point of answers but still unlikely we’ll get it. 

  • I feel like we’re in a limited club as I can’t find any stories of cancer or the hypopharanx and we know the stats are scary. Has anyone else had a similar story at this stage?

    Hi queeny. I can only agree with Peter but perhaps I can throw you a lifeline. I had an avid scan after treatment which was biopsied with negative results. And I’m alive and kicking over two years later. 
    I will tag  who had cancer of the Piriform Fossa which is technically hypopharynx. He had a recurrence years after treatment and had salvage surgery. Maybe he can throw some light on quality of life from a personal level. 
    I hope it doesn’t come to that and a better solution is found 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

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

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  • Hello Queeny, as Dani has said my first cancer (2013/14) was pretty much the same as your father's but my treatment was a bit different in that I had the neck dissection before the RT and chemo (I managed two of three chemo sessions). Pleased he coped well with the treatment, it's not easy!

    Does sound a little confusing, "uptake on his larynx but biopsies are clear" seems to be sending mixed messages, I'd ask for clarification if it was me. Waiting is always difficult but my team always told me that it's more important to do the right thing than to do something fast.

    Has anyone mentioned the possibility of a laryngectomy or is that a possibility that you've come to yourself?

    As Peter said the neck dissection op is relatively easy to cope with and recover from, I was in hospital for five days. What age is your father and what's his general health like?

    I personally did end up having a total laryngectomy last year which I'd be very happy to talk to you about if it becomes the only option, as it did for me.

    Wishing you all the best, sorry I can't be more helpful.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Hi Mike, this is really helpful. So yes clarity is key… he had another biopsy on Monday so yet again waiting for results, MDT and then to see the consultant Rolling eyes.

    My Dad is 69 - he has said over the last few days that he doesn’t want the laryngotomy I think due to the recovery and I tend to agree with him he isn’t the best state mentally at the best of times and I’m not sure how receptive he would be the rehabilitation. He doesn’t lead an active and healthy lifestyle. 

    I suppose I’m hoping to have a realistic chat with the consultant to advise what he thinks prognosis is… I think my dads point is he would be happy with a couple of years just with the dissection. 

    i know you should stay off google but Hypopharanx cancer doesn’t read positively. He has other complications of diabetes and a heart condition that I also wonder would slim his chances of even getting the laryngotomy anyway. 

    Did you ask you consultant the dreaded questions?  In terms of likely outcomes.

    Glad to hear your doing well - I can’t imagine what you’ve been through.

  • Queeny no I didn't ask the "dreaded question" really, my attitude was to just let them get on with it; closest I got was asking a junior oncologist what she thought my most likely outcome would be and she said "complete cure" so I took it no further. To this day I don't even know what my official staging was because I wasn't interested.

    As to googling the results you see are historic so by definition out of date and not a realistic reflection of how things are today, best avoided.

    When I had my second diagnosis last year (I was sixty and not at all fit) I was offered three options, the total laryngectomy which they called "belt and braces," laser surgery which would probably buy some time but was unlikely to give good margins on the tumour, or palliative care. I'd discussed the "palliative" option ahead of time with my family, but then five days after my diagnosis and six days before treatment options appointment my wife died completely unexpectedly, so that ruled it out for me, couldn't let kids/grandkids lose both of us so quickly. As it was they said I'd probably only have had six months anyway so not an option I'd have taken in any event.

    The surgery/recovery was very tough and I was in hospital for four weeks then another one when I developed an infection. I couldn't eat or drink for five months and still have no voice but I'd do it all again without hesitation, though it is very hard mentally as well as physically so if your dad struggles then you just have to agree on a course of action that's right for him. I wish you well.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Thanks Mike really appreciate you taking the time to answer some questions and put us at ease.

  • You're very welcome, any time.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/