Hello, I’m new to the group and I’m looking for advice please

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Hi all, I’ve just been diagnosed with Nasal / Para Nasal cancer and one of the two treatments suggested involves removal of my nose, a healing period of some 3-4 months, then I’d be fitted with a prosthetic nose. I understand that the prosthesis has to be removed each night.

i would really appreciate hearing from someone who has been through this treatment in recent months, to understand how they managed with not having a nose at all for such a long period, how they dealt with this mentally/emotionally, and whether they’d make the same decision again having been through it.

The other treatment suggested is much more involved, and involves maxillofacial reconstruction, a 12 hour operation, 4 weeks recovery in hospital and then months more recovery at home.

I’m being pushed to make this decision on Thursday 4th April but don’t want to make the wrong decision so would be extremely grateful if anyone could share their experience. 

Thanks in advance,

Waltonian

  • Hi sorry you’ve found yourself in here I’ll tag one of the group who  has had similar to your diagnosis  look in the search as well the magnifying glass symbol put nasal cancer and you should get some threads there. Plus I’ve tagged  hopefully they’ll pop on over the weekend. It’s hard when you’ve a short time to make life changing decisions. 

    hugs Hazel 

    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  

  • Thanks Hazel, much appreciated. Jim

  • Hope my experience helps. I was diagnosed with stage 4  four years ago and after MRI scan luckily it hadn't spread to lymph glands.

    1. My nose collapsed and I had to have surgery which was a partial rhinectomy. I was diagnosed in February and My surgery was in June and most of the bone, front  and part of one side had to be removed. Unfortunately some of the cancer was left so had another operation in September removing most of the sides. This appears to have removed it all and after the slides were checked given the all clear. Waiting for my final face to face examination and then will have a prosthetic made. Will be monitored for 5 years.

    This is a very rare form of skin cancer so not many people have had this operation.  I spoke to a few ppl that had the opeation on this site which helped me understand and cope emotionally. I didn't have radiotherapy but some ppl did.

    I came to terms with the change in appearance by acting normally and tbh it wasn't as bad as I thought it would be. Ppl then treated me normally and saw me as a person and not someone who was disfigured. The recovery time was trying as it was painful but hospital gave me strong painkillers. The healing process went well. I decided against reconstruction and magnetic implants as I didn't want any more ops. I settled for a prosthetic but it only stayed on for a couple of hours as my nose kept running so after a while I abandoned it and just decided to stay as I am. Some ppl stare and I just smile but most ppl get used to you the way you look. Kids are the best. They don't even notice that much and ones that do say well you look normal anyway.

    You only have a short space of time to decide on your surgery so the best thing to do is speak to your consultant and surgeon to see which is the best option for you.

    Terracatb

  • Hi Terracat,

    Thanks very much for taking the time to respond, it's much appreciated.

    From your message, you decided against a prosthetic nose which was attached by magnets, so did you go for one which was glued on? I am curious because I'm only really considering the magnet option, even though it would involve one additional bout of surgery for them to insert the fixings.

    Did you ever get to the bottom of why your nose was continuously running? It's interesting that you didn't have radiotherapy, as that is definitely something I'll have to have, according to my surgeon.

    I'm pleased for you that you have been able to come to terms with the outcomes and thanks again for taking the time to reply.

    All the best to you

    Waltonian

  • I opted for the glue on prosthetic. My nose has always run and as the insides are the same this is prob why. I was very lucky not to have radiotherapy as most ppl on here have.

    Hope your surgery goes well.

  • I thought I'd provide an update to my previous post in case anyone is facing the same decisions as I had to face a month ago. At the end of March, I was diagnosed with Squamous Cell ParaNasal Cancer T4N1M0. See my post previously for treatment options I was given. I opted for the rhinectomy as I felt that I could live with that, and because I didn't feel comfortable about the maxillo-facial reconstruction on offer. One month ago yesterday, on the day of my operation, my surgeon said "look, I'm a woman, I'm 20-odd years younger than you, and if I were in your shoes, I'd have chosen the same option". So that made me feel confident that I'd made the right choice.

    The tumour was pretty aggressive and therefore so was the surgery. Post-op, I was told that the team felt that they had got good margins, which was later confirmed by the histology results. The pre-op MRI scan also showed possible cancer in a couple of lymph nodes, but when they went in, it was all clear, which was great news. They rattled a couple of nerves around during the neck dissection though, so I have a few side effects (jaw, tongue, first bite syndrome, numb ear) most of which I am assured will lessen or disappear within 8-12 weeks providing I keep at the exercises! I'm beginning a 6 week course of radiotherapy in a couple of weeks. 

    I've been given a thermoplastic temporary prosthesis which will be modified or replaced a couple of times between now and possibly November, when I will probably receive my first long-term silicone nose. It's currently held in place by 3 or 4 strips of elastoplast. I'm still wearing it at night which is not ideal, as the bandages loosen each time I wriggle my head around on the pillow but I am continuing to sleep with it in place for the moment until my wife is ready for me to use a mask at night to cover the hole instead of a prosthesis. It's a big adjustment for her too and I'm trying hard to think of her mental well-being and ensure that she has whatever support she needs.

    I have to say at this point that the NHS team looking after me at the Royal Surrey in Guildford have been nothing short of incredible. The multi-disciplinary attention and expertise I've had from ENT, Oncology, Radiotherapy, Speech and Language team, Physiotherapists, the Orthodontists, the Clinical Nurse Specialists, all of these and a few more that I've probably forgotten have been utterly amazing, reassuring, informative, clear and supportive. In addition, I've had support from MacMillan, and the Fountain Centre Charity at Guildford.

    I'm pretty upbeat about things generally, at least I'm still here to talk about it. I've got to get through the radiotherapy of course, but loads of others have been through that and come out the other side, so I will too!

    So, after writing a lot more than I thought I would, I have a question about cleaning the nasal cavity. I now have a pretty significant cavity behind where my nose was and after having had it cleaned weekly by the MaxFac surgical team, I'm just starting to clean it myself every 3/4 days. I wondered whether anyone else on here is in the same boat and cleaning a hole/cavity and what they're using to moisten the crusty deposits before removing them (apologies if you're having your dinner!). Someone suggested a nebuliser, other have said moisten a gauze pad with saline and dab it all over, but I'd be grateful for any experiences.

    My best wishes to you all, wherever you are on your journey.

    Onwards and upwards,

    Jim

  • I have to say at this point that the NHS team looking after me at the Royal Surrey in Guildford have been nothing short of incredible.

    I am so happy to read your post

    Not only on  how well you are doing but how well your NHS experience has been. I’ve lost count of the number of posts saying how rubbish it’s all been. 
    Today I filled in a questionnaire from somebody I know well via this cancer. Most respondents have been hugely negative. I like to throw some balance into the equation. Most of us are treated well and cured. It’s the bad press that gets the headlines and that’s a real pity. 
    Thank you  

    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 Jim Thanks for the update yiu seem to be doing really well and being considerate as well. I too can’t fault my NHS team Leeds cancer centre it’s good to hear yours is great. Sorry can’t help with the cleaning but when radiotherapy starts ir before can help with tips for that. 

    Hazel x

    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