Here we go round the Mulberry Bush

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Hello All

Last May I was diagnosed with SCC of the Epiglottis, had 2 lots of Laser Resection and got clear margins.  Thought great that wasn't too bad I have beaten Cancer...….

Well check up in January not too bad said the stump was slightly raised come back in 5 weeks instead of six.  Two weeks later I developed a lump on my top lip.  Saw my dermatologist and he said you need to see maxilla facial I am certain this is a SCC.  So I bought forward my check up by a week and they called Maxillo facial in.  By now lump had grown, they did a biopsy same week and it is cancerous.  At the same time a new growth was noticed on my Epiglottis, so was referred for biopsy.  While this has been going on Respitory have been watching a couple of lung nodules.  So I have a possible 3 sites of Cancer.  Been to MDT today and Radiotherapy is the treatment for my lip.  Biopsy still needs to be done on Epiglottis, but Pre op would not clear me for surgery until I get results of latest lung scan also done today.  I feel like I am going round in circles waiting for someone to make the first move and no one can tell me if I have a secondary on the lip from the Epiglottis or a new primary I am getting so confused with what is going on.  I was trying to ask questions today and the Radiotherapist consultant said we have to get started or opt for Chemo for palliative care.  Are you all confused yet because I am.  So then the dentist arrived and thank god I have good teeth so no delays to start of Radiotherapy as the lip tumor is still growing and too large for surgery that might leave me with something resembling a face.  Was warned that it will be very painful because of nerve ending etc.  It is already so not sure how I am going to cope with even more pain and struggling to get any food in my mouth already and drinking through a straw so HELP...

  • Bit of a whirlwind! So sorry 

    They need to know if everything is connected. CT should be available to your MDT pretty quickly so I’m sure they will get you in as soon as they know what’s happening. The waiting is excruciating. I can only feel for you. I hope you get a result soon. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi 

    oh bug not the news you wanted to hear! All I can add is hope you get something concrete soon. For eating have they suggested a peg or st least s nasal  feeding tube ? Although maybe your epiglottis could rule out the nasal tube. Have you had s pet ct scan st all ? Make sure you are given adequate pain relief and not just paracetamol. 

    I remember your posts from last year about the frozen sections bring taken from epiglottis on cancer U.K. site. 

    Sending hugs as that’s all I can do 

    hazel xxx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Hazel

    Hopefully will hear about the lungs on Tuesday.  And ENT want me to chase admissions for a Biopsy date once I get these results.  What is confusing me is they dont know if they are related nor do they seem to care.  For now they are just going ahead with arrangements for Radiotherapy said it will take about 6 weeks to start.  This lip growth has got large in 6 weeks that's all it has been since it started so am worried it will grow even more while waiting.  Already it is too big for surgery and incredibly painful, already living on Paracetamol and occasionally Co Codomol when I cant sleep.  Trying to just push it all away at the moment because there is nothing I can do.  I am going to Crufts on Saturday to meet some Saint Bernard owners, know it will tire me out but might be last day out for a while.  My Dogs sister is competing so looking forward to seeing her strut round the ring.  Its also worrying me that I wont be able to cope with an 85 kg dog wanting to love his mum when the side effects kick in, he is only 16 months old so still a playful pup really.  In the big scheme of things thats not important but it is to me its the things I live for and enjoy.

    They said they will sort out the pain meds as we go and if I need any food supplements.  I have just spent 2 months on a liquid diet to get my Crohns under control so I am making sure I have a few tins of this in stock and it is on my GP record for repeat prescription.  The Modulin is not too bad so am going to request I stick with this rather than the Forticep etc as now body is used to it it can keep me going however administered.  Depends on how much it grows in next month I expect to what type of food tube I will need as very close to my nose and affecting sinus already.

    Sorry to waffle.

    Love Mo xx

  • Oh crikey Mo I just don't know what to say other than I really hope an overall plan can be put together quickly for you once you get the results next week.  As you say, you just have to keep pushing if you're concerned about your lip.

    How lovely to read about your dog etc.  Have a brilliant time at Crufts - I'll look out for the St Bernards on the TV.

    And never apologise for waffling!

    All the best

    Linda x

  • Hi Mo

    i had two pulmonary nodules on my chest CT prior to start of RT. Nobody mentioned anything to me till I started treatment and then I had to wheedle the information out of my oncologists registrar. They said it was important to get the RT planning done ( it’s the physics of it and using computer algorithms to plot the xrays that takes the time) and they would investigate the nodules after a follow up scan. So there you have the reasoning. The RT planning is time constrained the lung lesions not. As you know, it’s a different department. 
    I used to love Crufts and used to go every year when it was in London. One year I spent the entire time taking photographs of folk who looked like their dogs. People were so kind and helpful. I always kept Border Collies, still do. I loved to watch the Flyball. I hope you manage to enjoy it and have a good day to ease your mind off things. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi Mo

    waffle on all you want to ,always willing to listen and help if I can . Yes go to crufts and enjoy your self it will do you good doing something you love. Hope you have someone to help you with your 85kg babe ! Ps wouldn’t want to see size of poo bags lol. 

    Yes if yiuve got a food supplement that you can do keep with it 

    keep in touch please 

    Sending hugs

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Mo

    i also meant to add what Dani has already said the  radiotherapy is an exact science that takes time to compute , plus yin will need a mask making and ct scan for planning so take Dani’s advise she is a mine field of useful information that comes with her medical background .Mine is purely from my experiences.

    will watch out for the St Bernard’s on crufts 

    H xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi St Bernards Lady, its certainly is a complicated issue then you get the problems with the different consultants getting together and coming up with a plan. Let's hope they can get the ball rolling a.s.a.p, I think if surgery is involved they will do that first followed by any treatment once everything has healed. I know what it feels like when cancer returns, it can be deflating sometimes but try and stay positive, hope all goes well with the dogs show, wishing you all the best, take care.

                                                                      Chris x

    Its sometimes not easy but its worth it ! 

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  • Hello All

    Thoroughly enjoyed Crufts it was great to meet a lot of other Saint Bernard owners and their dogs,  A tiring day but glad I went.  

    Yesterday I had neck ultrasound and all looks clear in the nodes so that was good news.  Had results of chest CT today again slight changes to a nodule deep in my left lung but nothing they are too worried about, want another scan in 6 months.  He explained that the nodule is too deep in my lung for a FNA cannot say I am out of the woods but not too worry too much.  Then had another appointment with the anaethetist to see if they will now clear me for further biopsy on my Epiglottis.  He was great and explained a lot more than the surgeons have so far.  Said that they will do a biopsy excision and hopefully clear this new growth from the Epiglottis in one go, he was the anaethetist that put me under for the last two lots of surgery.  He also explained that we need to get this done ASAP so it can heal before the Radiation on my lip starts.  I explained that because this tumour is still growing I was a bit upset and confused about what was going to be done and he has put my mind at rest quite a lot.  Said I should have a date in the next few days for this as it is now marked as urgent.  I also discussed with both if a couple of bouts of chemo might be good and they both say it wont do any harm to mop up but not sure who I need to approach to actually ask for this to be done.  Still don't know if the lip is a secondary or second primary and he was going to try and find out for me but my paperwork is in a bit of a mess with all the different departments and said we shall talk again in surgery.  So now just waiting on a call from admissions.

    Keep well everyone and stay away from this virus.  Hope you have your toilet rolls a plenty xxx

    Mo

  • Ho Mo, it seems its a lot clearer now as like you were a bit baffled on what there plan of attack would be. So it looks as fit things are gathering pace and they are getting to the bottom of the epiglottis matter and will be operating on it a.s.a.p then onto the lip with the radiotherapy. It all looks pretty good at the moment and things are on the move so hopefully, it will come together before your next scan in six months. Thanks for the update and hope the call from admissions is not far away, all the best, take care.  

                                                                                          Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge