Concern at what told

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A wee bit concerned - both MRI (Wed) 5 pm and CT( Fri) 1pm both with contrast dye, apparently they do this so as to avoid reaction to contrast dye. 

Have any of you had them so close together and had a reaction?   Concerned that am due to travel Friday evening or Sat morning to stay with family as seems like only oppertunity as have appt just after Easter with consultant re tests. 

The thought of visit has boosted me this weekend.  But 3 hour journey.

Once again I think I am reading to much into this possible reaction, but spoke with radiology this morning about MRI and she mentioned reason both done apart.

I know I will face much bigger things than this.  

UPDATE

Met consultant yesterday an explained posible direction after scan results.  He was very decent and while not had scan wanted to explain possibilities and after effects this hopefully what you can tell me of.

removal area side and under tongue should be size 20pence piece and less depth, he then went on to say the usually do 2 things during this, one was idione dye to see is spread to lymph nodes and remove what is highlighted  in neck....pointing out that this doesn't always pick up really small early things things and sometimes results in a further surgery and fuller  neck disection.  Or they do the neck disction which is the main thing they do, I felt possible that would be my option, but last night reading up I found so much to question.  He did mention ear numbness unable ti lift arm above head site cut from back ear to under chin.  All really daunting.  Chemo etc not mentioned   Biopsy showed early stage which was good.  

Looking on both here and Cancer research Uk it mentions ear numbness lifting arm above head.  But is this permanent.  The nurse discussed this and lymphodema and honestly they seem to act like it is all normal and all controlable.  I asked if it would stop me driving with movement in neck and top arm shoulder and of course not.  It appears to be on left side so mouth and not right - I am right handed.

Please has anyone had this neck thing and what is the result and what are you left with pain wise and movement wise.

I am due pre med this week also now.....due to wanting to move on quickly when resutts back due to after Easter. seems the MDT meeting will be second week April ,

Sorry  for ramble but not slept a wink and not wanting to go away at weekend.  By end week I will have been to hospital on four consecutive days.

There was also mention consent signing and might be updated later.

Thank you

  • Hi Lanclassie

    I had base of my tongue removed both tonsils, and second op deeper under where left tonsil had been. I also had neck dissection with 25 nodes removed. My ear after operation was numb, slight problem lifting arm, and I did have slight mouth droop. This all cleared up, I joked with the nurse after my op that I couldn’t feel my ear, and I wouldn’t know if you chopped it off. My ear went back to normal feeling, did exercises for my arm, and my mouth looks normal. I drive I compete in triathlons. I can only speak for myself, it’s not over night, but within a few month, some of the numbness was wearing off. There’s others on here who can give you good advice and support 

  • Thank you It is the unknown that worries me, Just to add the first option mentioned was sentinel surgury, it seems less invasive.

  • Hi  

    Some people cope very well with neck dissection and others less so. It also depends on how extensive that dissection is going to be. there's no way of telling. The first option is Sentinel Node Biopsy. The tumour is injected with a dye which travels to the lymph node/s draining the area. If the cancer is going to spread this is where it goes so they take just these nodes out and biopsy them. As you say, this is much less invasive. You are on frequent review for five years anyway whether you have dissection or not. I would definitely choose the SNB but that is my choice 

    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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  • PS. If you click my search link it will give you some dissection posts. Scroll down to filter to one year and it should give you fewer

    DISSECTION

    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 Lanclassie, this is meant be informative and helpful not negative but if I could go back now and had the choice to avoid the neck dissection initially, I would. I had bilateral neck dissection (and central) for thyroid cancer spread to lymph nodes. It was quite an invasive op though, as surgeon wanted to be sure to get it all out in one op, so from what I read I'm not typical and the majority have had no problems at all but 9 months post op I still have shoulder pain and neck tightness. Arm movement depends if they bruise the spinal accessory nerve or damage it more permanently, seems it's very hard to avoid it during this op. Thankfully mine was only bruised, so I've now regained almost full arm movement but it did take a long time and a lot of physio and determination on my part and were very painful and weak. As for driving, I couldn't change gear with left or bear to rotate the wheel with right, also turning neck was difficult so had to wait until that improved! Ears still feel weird and a bit numb but don't bother me. My scar ear to ear, but hardly noticeable now. (Lots of bio oil and moisturiser twice a day!) Bottom lip affected a bit at first but fine now. The consent form usually covers all of these things.

    The take away from this really is that to get rid of the cancer of course we'll do anything and we're in the surgeons experienced hands. They do this like clockwork. Yes they see it as all “normal and controllable” for them as you said and given time these after effects either improve or we do learn to accept how it is. Just know it really is all do-able whichever procedure you have, there's always someone on this forum that's been where you are, it's a Godsend and we'll help you through it x

  • Hello there Lanclassie

    i had neck dissection as part of my surgery two years ago. Initially ear was numb and arm movement limited, however arm movement came back fully after about eight weeks and just exercising gently two or three times daily seemed to do the trick, the arm is now as strong as ever but has a slight tremble when being held in a certain position, but to be honest doesn’t cause a problem.  I had 29 lymph nodes removed and 4 of them were infiltrated. I do have Lymphadeama around the chin and jaw area but that was probably caused by the jaw surgery,not dissection.  My ear still feels weird but not painful.  Hope this helps. Sending you my very best wishes.

    June

  • I have had 2 neck dissections.  The first removed a lymph node. The second removed the majority of the rest on that side.  Neither involved a cut from my chin round my neck.  Both surgeons did around a 75mm cut in my lower neck in a fold in the skin so the scars are mainly invisible.  Initial recovery was quick and relatively painless.  I have had some side effects.   They will describe all and the worst that can happen.  The chances are that you will have few.  For me the biggest issue was they moved the Accessory nerve and that left me with limited shoulder movement for around 18 months.  As with all things it takes time to fully recover.  I now have no impact on my quality of life.  I do have a few funny lasting side effects - like scratching my neck and feeling it at the top of my ear!  If needed I would not hesitate to have another neck dissection.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Lanclassie

    I have had neck dissections on both sides at different times, once during the op for a mandibulectomy and one as a stand alone op 5 years later.

    Both times I had a cut from just below my ear down my neck to near my collar bone. The scars are hardly noticeable now. I still have a slight numb feeling and tightness the length of the scar in my lower ear and down my neck but nothing that bothers me. I did have a restriction in raising my arm above my head for a short while which is normal but this improved quite quickly and is no longer an issue. I did not need physiotherapy for it. I had no complications and had a quick recovery both times. I did not have lymphoedema and have no pain from the neck dissections.

    It is an anxious time for you but you can do this. Sending my best wishes.

    Lyn

    Sophie66

  • thank you once again to you all - I think I am still in no mans land with not yet having the multi team meeting whick is April, today MRI and all went well - tomorrow is pre op, consultant wants to get all boxes ticked so as to move on.