topic 33 yr olf woth scc found a lump in my neck this morning :-( in I've just been diagnosed

33 yr olf woth scc found a lump in my neck this morning :-(

rarbie — Wed, 11 Mar 2009 01:21:11 GMT

Hi, I am super stressed-as above title mentioned, i have a hard lump in the (L) side of my neck-the same side of the head as my SCC. Thankfully I have made an urgent appt with my Radiation oncologist today after my 1st radiation treatment today. Thanks again to the cancer helpline in WA for guiding me in what i should do next-when my brain go 'stressed and scatty'

33 yr olf woth scc found a lump in my neck this morning :-(

Gaffo — Wed, 11 Mar 2009 01:22:11 GMT

Hi Rarbie, I'm keeping my fingers crossed for you, nothing I can say at the moment will help but regardless of the outcome, it can be beaten. My hart is hurting for you but my wishes are nothing but possitive thoughts for your wellbeing. Gaffo

33 yr olf woth scc found a lump in my neck this morning :-(

rarbie — Wed, 11 Mar 2009 01:23:11 GMT

Thanks Gaffo, My new oncologiust fast tracked my FNA of lymph nodes and MRI yesterday, here in Perth-I get the results on Tuesday. (only 3 sleeps) The PET will take 2 weeks as only one machine in Perth. I do have a great partner who is so kind (but I think he is also very stressed about the possible prognosis as well) I am getting great support from the cancer helpline nurses, coz they understand my fears and stress about waiting for results and advocating for the new oncologist I saw yesterday. He is better and less arrogant (thank goodness) I am trying to live in the moment as much as I can. It is great being able to post my fears here and I hope that by Tuesday I know alittle more about what is next for me. Thanks a lot guys 🐵

33 yr olf woth scc found a lump in my neck this morning :-(

Gaffo — Wed, 11 Mar 2009 01:24:11 GMT

Hi Rarbie, I was thinking of you yesterday, hoping your results were all ok. Regards Gaffo

33 yr olf woth scc found a lump in my neck this morning :-(

rarbie — Wed, 11 Mar 2009 01:25:11 GMT

Hi Gaffo Unfortunately the news yesterday was pretty crappy. the SCC has metatasised into my lymph nodes so now I am a 'head and neck' cancer person now!! Next monday I see the head and neck team who will swiftly send me off for a parotidectomy and neck dissection of my lymph nodes with radiotherapy to follow. It is a scary time, thanks for your support-please don't worry about yours metatasising: I am a very rare case and my scc is acting more like a melanoma than a scc the dr's said. I am no textbook case at all. From now on I wil post in the head and neck room-as I don't want to scare any skin cancer patients. Thanks for your support and please cross your fingers for me/pray/send poisitive vibes/meditate or whatever that I am going to beat this sucker of a cancer for good. 🐵

33 yr olf woth scc found a lump in my neck this morning :-(

Gaffo — Wed, 11 Mar 2009 01:26:11 GMT

Oh Rarbie, I'm so sorry but this can be beaten! I'm not worried about my own situation, I've gone from three monthly to six monthly and now I only need to go for a check up every 12 months. I'm also about to use a cream (in the new year)on my face which they've had great success with preventing sun spots turning into SCC & BCC. Your situation is rare but not unheard of. I Know of a guy who had MOS surgery the same day as me and they stoped because they couldn't get clear cells and they discovered the same prognosis as yourself. They were also concerned initially that mine had moved to my left eye so they took a peice of my tear duct which luckly come back clear. You can of coarse post in any area you choose but don't be concered about scaring other skin cancer patients, people need and want to know what they may have to face. I know you got something out of knowing I had SCC and although it has progressed further with you, your still not the only one to have faced this. I don't know if you've checked my home page but I've unfortunately been touched personally by cancer on several fronts and have been able to provide advice to many people and hopefully it has made a difference to their situation. Please stay in touch and there is help out their for your partner as he will be doing it tuff as well. My possitive thought are with you and the success rate is still very high for those in your situation. Warm Regards Gaffo.

33 yr olf woth scc found a lump in my neck this morning :-(

rarbie — Wed, 11 Mar 2009 01:27:11 GMT

Thanks guys, It has been a crazy week-radiotherapy has been stopped and i have had a CT scan which shows suspicious lymph nodes. I now need a fine needle aspiration, MRI and PET scan. There is a wait time here of ~ 2weeks to have the tests done in Perth (even in the private system) I am seeing my new oncologist today ( I stopped seeing my first one on Monday when he told me the lump I had found was my carotid artery or hyoid bone: and didn't validate my concern at all) I saw my surgeon on Tues and he agreed that there was the lump and has arranged for all these above tests. i meet my new oncologist today and hope he can speeed up the tests being done-I can't handle waiting for results while the tumour could be metastising down my lymphatic or my facial nerve. ARGH!!!! I didn't go to work for the past 3 days and will try to go next week ( apart from the test appointments) I am reading a book called 'coping well' by Battino which is helpful-but I am feeling overwhelmed-scared and upset that there are so many unknowns about my treatment and prognosis. Please cross your fingers for me that the tests can be done more quickly and that my new oncologist who is a head and neck specilaist is kind and not as arrogant as my previous oncologist who talked down to me on monday when I first found the lump. :o/ I am thinking of flying interstate to get the tests done more quickly so that the ball can get rolling again for treatment-Are there similar wait times in Sydney?

33 yr olf woth scc found a lump in my neck this morning :-(

Gaffo — Wed, 11 Mar 2009 01:28:11 GMT

Hi Rarbie, I would be surprised if you could get the tests done any quicker in Sydney, especially this time of year. You could badger your GP to get on the phone with your oncologist, they can sometimes get things moving or enquire about interstate options but I think you would be better off staying put. It would be better to be under one team for the duration of your treatment, barring incompetence of coarse. Well done for sticking to your guns with your previous oncologist, nobody knows your body like yourself so always challenge any situation and ask all questions that pop into your mind. Keep a diary and write things down so you can ask them later, you often forget important questions in the heat of the moment. I truly understand just how scared you feel and not knowing is the hardest. Do you have close family and friends you can cling to? Don't be afraid to let them in and help you. tell them how you feel, cry all over them, they wont mind. I'm thinking of you and am here to chat whenever you need. Warm regards Gaffo.

33 yr olf woth scc found a lump in my neck this morning :-(

mikey — Wed, 11 Mar 2009 01:29:11 GMT

That's no good at all. Let us know what your oncologist has to say.

33 yr olf woth scc found a lump in my neck this morning :-(

rarbie — Wed, 11 Mar 2009 01:30:11 GMT

Thank alot Mikey, Thanks for this forum-it has helped me alot. See ya in the head and neck room-I will probably be the first person to post there as well!!! 🙂

33 yr olf woth scc found a lump in my neck this morning :-(

rarbie — Wed, 11 Mar 2009 01:31:11 GMT

Thanks guys, I am pleased to say that I have had 2 clear cat scans since Sept this year. I feel well and was recently inspired to hear a speech by Dr Chris Obrien and read his book 'Never say die' I thinnk chpt 25-30 are the most significant and powerful for people with fatigue who can't read his whole book. Best wishes to you all. Hugs Rarbie

33 yr olf woth scc found a lump in my neck this morning :-(

Merkel — Wed, 11 Mar 2009 01:32:11 GMT

Hi Rarbie, I have just read your post on SCC. I hope your doing well in your treatment. Just to give you some support, I'll tell you about my skin probs. I am a six year survivor of Merkel Cell Carcinoma it's very aggressive, I've also had three SCC's and many BCC's. My MCC had metastasized to a lymph node under my left arm. I was stage two, after Chemo & Radiation I'm still here, if there's any questions I can help you with don't hesitate to ask. I'll give you some of the experiences I've had with cancer in the past. My father had a melanoma (Deceased) My cousin lung cancer (Deceased) Myself 2002 Merkel Cell Carcinoma, SCC & BCC Husband 2005 bladder cancer muscle invasive TCC Brother 2008 bowel cancer (Deceased) Be strong, there's a lot of support if needed. Merkel.

33 yr olf woth scc found a lump in my neck this morning :-(

doreen — Wed, 11 Mar 2009 01:33:11 GMT

Hi merkel,My dad also had a melanoma removed from behind his ear in 1963 which needed a skin graft... since than has had many basal cell and squamous cell cancers on arms, leg and face some were frozen others cut out one on his hand needed a skin graft 3 on his face were removed and a flap of skin pulled over where the cancers were removed from...dad had a BCC remove from his head in September the doctor did a flap so that dad would still have a full head of hair ( my dad is very proud of his hair)... we got such a shock when the doctor rang to tell us that BCC he removed was a MCC we had never heard of a merkel cell cancer before...dad had the MCC removed from his head and a skin graft from his thigh on the 1st of Oct and we are now waiting to hear when he is to start radiation....we don't know anything about this type of cancer...dad has new cancers on his head already only been there for a week or so.. don't no what to make of them...Dad was in the navy during the last war (WW11) his cancers are all sun related ... Pat