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Neck Cancer question.
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Posted Hide Post
Hi LMTU,

Well done for getting through the needle and scan. It's one step at a time, so keep going.

Just thinking "The needle and the scan" sounds like a Neil Young song?

Good luck

Ken


Two Year Survivor
 
Posts: 153 | Location: Ireland | Registered: 04 September 2008Reply With QuoteReport This Post
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Hi Kenny

Yes but whats worrying me is what is next the doctor calls it cervical lymphadenopathy, I thought that is what women get.

My neck gland is some times throbbing so Im so worried its malignant cancer and what will heppen next?

Thanks again

LMTU
 
Posts: 35 | Location: Blackpool | Registered: 28 August 2009Reply With QuoteReport This Post
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Thanks Kenny,
Yes but it make me wonder whats in store for me if i have to have a biopsy can it be does with a local anaesthetic my worst fear it to be put under a general anesthetic.
 
Posts: 35 | Location: Blackpool | Registered: 28 August 2009Reply With QuoteReport This Post
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Hi LMTU

Whoever decided to give two different body parts such similar names must have done it just to confuse people--cervical spine (which we all have and goes from the base of the skull to the shoulders) and cervix (which roughly half of us have and that's all I'll say). Whose brilliant idea was that?

Did your doctor give you anything for the pain? I hope it's better than what I was initially given--Vicodin. It didn't touch what I've since learned was "referred pain" but it was the strongest med they could provide me (it was a charity clinic and I was uninsured).

Do you know if the doctors are planning on a surgical biopsy or a needle biopsy? That would determine what type of anaesthetic they'd need to use. You should explain this to them in advance--it really will save all of you a lot of aggravation.

Please let us know how things turn out.

Julia


Howdilly doodilly, survivorinos!
 
Posts: 827 | Location: Hollywood on the Huron | Registered: 15 February 2008Reply With QuoteReport This Post
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Thinking about you, LMTU! How are you doing? Please take advantage of your new friends on this board. We're here for you.

Mimi
 
Posts: 593 | Location: Sacramento, California | Registered: 16 January 2008Reply With QuoteReport This Post
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Bad News I'm afraid, I had my MRI scan, I went to find out the prognoses yesterday, the doctor said grave news I'm afraid, you have a mass at the back of your tongue, so far 1/4 of your tongue has a mass, he then took a biopsy and said in his experience and looking how fast your lymph node is growing, it looks bad, I would say it’s an 80% chance of Cancer, and if that is the case to operate, all your tongue would have to come out and your voice box, also Chemo and radiation treatment, if you think the tongue coming out is to invasive, we could try Radiation and Chemo alone,

So as you can see, I am devastated, I would like to know if anyone has had this happen, if so could I expect any more of a quality of life, if I stick to Chemo and radiation treatment only or will it still grow, or has any one any experience of 'back of the tongue' Cancer, I have been told eventually, I won’t be able to swallow, then my throat would close up, sounds like some horror film.

Any advice, Help, I’m terrified! As you can well imagine.
 
Posts: 35 | Location: Blackpool | Registered: 28 August 2009Reply With QuoteReport This Post
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Hi LMTU

I am so sorry to read your news. You didn't go alone, I hope.

My tumor was limited to my tongue (still scared me s***less, though), so surgery was all I required. Some of the folks on the site have been through situations like yours--whether as a patient or a carer--and we're all here to help each other.

It's hard to say how you'll respond to treatment, but it's certain that any treatment is better than not doing anything. Cancer, unfortunately, isn't like a cold--it won't just clear up on its own.

You're not in this alone.

Julia


Howdilly doodilly, survivorinos!
 
Posts: 827 | Location: Hollywood on the Huron | Registered: 15 February 2008Reply With QuoteReport This Post
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Thanks for your quick reply Julia, yes as you can imagine I am devorstated, no I was alone and had to sit and take it all in, as if I was hit on the head with a hammer.

I'd like to know if Chemo and radiation alone will shrink the cancer enough, to give me any further quality of life.
 
Posts: 35 | Location: Blackpool | Registered: 28 August 2009Reply With QuoteReport This Post
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Hi
firstly lets just establish that BOT cancer with total glossectomy,neck dissection ,removal of the voice box,chemotherapy and radiation are not so rare and have been known to be very successful.The bottom line is an aggressive cancer that needs aggressive and some time radical treatment.If you are in good general health,and it hasnt already spread to other parts of your body,then it is very doable.Percentages and statistics mean nothing.My husband was told he had a 90% of a full recovery,its just sods law he was in the other 10% and died 8 months after diagnosis.

I am not going to kid you that what lies ahead will not be painful,possibly disfiguring,traumatic,very very hard emotionally very very hard physically but whats the alternative?.I think we both know the answer to that.

Yes you could have chemo and radiotherapy but with oral cancer unless its very early and quite small you need to throw the kitchen sink at it.Quality of life against quantity may come in to the equation,but only you can decide that.Are you strong enough to fight this?

Being scared is just where you should be now its a scary thing you have been told,but once the shock has worn off a bit,you need information and lots of it.What will happen if i do this? What will happen if i don't do this?What will happen if i just have chemo and rads?

Last but not least you have us to help you through,and you will need support and a carer.Its a long road love but you can make it.

This message has been edited. Last edited by: cookey,


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 669 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
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from Malignant Tumors of the Base of Tongue
quote:
Treatment

Medical Therapy

The choice of treatment for patients with malignant neoplasms of the base of the tongue depends on various factors. These factors include the clinical stage, histology, age, associated medical conditions, patient compliance, and potential adverse effects, complications, and outcomes. In order to allow the patient to make a reasonable and informed decision regarding treatment options, discuss these factors in detail before treatment.

Squamous cell carcinoma

Nonsurgical therapy for malignant neoplasms of the base of the tongue has garnered long-standing interest because of the significant potential morbidity associated with surgical resection. Historically, chemotherapy for squamous cell carcinoma of the head and neck has had limited success. Increased efficacy with platinum-based drugs and newer drug regimens has been demonstrated in the last 20 years. Typically, these clinical protocols include radiotherapy as a major component of the treatment plan. Curative chemotherapy given as single-modality treatment for squamous cell carcinoma of the base of tongue, regardless of clinical stage, is uncommon and is not recommended at present.

As is true with other sites of the head and neck, early-stage mucosal squamous cell carcinomas can be treated adequately with radiotherapy or surgical resection. With increasing tumor stage, cure rates decrease significantly regardless of treatment. Chemoradiation protocols are generally associated with significant morbidity in terms of speech and swallowing which tend to improve over time. Tumor stage, overall treatment time, overall stage, and the addition of a neck dissection significantly influence locoregional control.

Base of tongue carcinomas can be managed with primary chemoradiotherapy, with elective planned neck dissection for patients with palpable lymph node metastases. Brachytherapy boost (20-30 Gy) to the base of the tongue has been used in the past but has largely been replaced by three dimensional radiotherapy treatment planning. Patients usually require gastrostomy and occasional tracheostomy. The addition of epidermal growth factor receptor (EGFR) inhibitors, including the monoclonal antibody (MAb) cetuximab, has show efficacy in the treatment of primary and recurrent squamous cell carcinomas of the head and neck.

Surgical Therapy

The choice of treatment for base of tongue carcinoma is controversial, with options including surgery alone, radiotherapy alone, or multimodality treatment. Tumors of the tongue base have traditionally been removed by resecting the mandible or by using a translabial transmandibular approach. These procedures involve significant morbidity, including lip and chin scars, malocclusion, compromised deglutition, chronic aspiration, and altered speech articulation. Therefore, alternative techniques have been described to minimize the morbidity associated with transmandibular tongue resection.

As compared with transmandibular resection of tumors, transpharyngeal approaches show no measurable difference in terms of survival, tumor-free margins, speech, or swallowing; furthermore, transpharyngeal approaches result in less aspiration than transmandibular resection.

Many clinicians manage this disease with combined partial glossectomy (with attempts to avoid laryngectomy if possible) with planned postoperative radiotherapy. The risk of aspiration is higher for older patients with large primary tumors, and total laryngectomy is sometimes required. Recent advances in the application of minimally invasive technologies to cancers of the base of tongue have resulted in similar locoregional control rates with the decreased morbidity of larger, open procedures. These advanced surgical techniques require additional training and equipment to be performed but reported results are promising.

Good locoregional control rates have been reported at the expense of functional outcome. In general, surgery with radiotherapy is associated with better survival and less locoregional failure but more systemic failure than nonoperative methods of treatment. Positive margins are associated with a higher local failure rate. The placement of permanent gastrostomy tubes and/or the performance of tracheostomy to prevent aspiration are not uncommon. Planned postoperative chemoradiotherapy is indicated for advanced disease.


Please click link to Malignant Tumors of the Base of Tongue for full information.

Another source of information: Mayo Clinic: Base of Tongue cancer


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3777 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
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Some encouraging news:
Treatment of base of tongue cancer with paclitaxel, ifosfamide, and cisplatinum induction chemotherapy followed by chemoradiotherapy.
Laryngoscope. 2008 Aug;118(8):1357-61
Hancock SB, Krempl GA, Canfield V, Bogardus C, Kojouri K, Kaneaster SK, Medina JE.
Department of Otolaryngology, The University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA.
quote:

Treatment of base of tongue cancer with paclitaxel, ifosfamide, and cisplatinum induction chemotherapy followed by chemoradiotherapy.

  • OBJECTIVES/HYPOTHESIS: To assess the efficacy of paclitaxel, ifosfamide, and cisplatinum induction chemotherapy plus concurrent chemoradiation in the treatment of stage III and IV base of tongue cancer.
  • STUDY DESIGN: Subgroup analysis of patients with base of tongue cancer enrolled in a single-institution prospective phase II trial, evaluating an organ-preservation approach in the treatment of locally advanced head and neck cancer.
  • METHODS: Eighteen patients with tumors ranging from stage T2-T4, any N, or M0 were treated with a protocol of induction chemotherapy, with Taxol, ifosfamide, cisplatin every 21 days for up to three cycles. If the primary tumor exhibited a complete or partial response, patients were treated with radiation and weekly taxol and carboplatin for 7 weeks. Surgery was used for those with less than partial response or disease progression. Neck dissection was performed in cases with clinical or radiological evidence of persistent disease in the neck 6 to 8 weeks after completion of treatment.
  • RESULTS: Sixteen patients were male and two were female; the average age was 55 years (range, 43-65). Fifteen patients had stage IV disease and three had stage III disease. Of the 18 patients initially enrolled, 17 patients had a complete response. All 17 patients had no evidence of loco-regional disease at a median follow-up of 29.6 months. Only 1 of them developed distant metastases 30 months after completion of treatment. Three patients required permanent percutaneous endoscopic gastrostomy tubes because of severe dysphagia associated with concurrent chemoradiation.
  • CONCLUSIONS: The treatment regimen studied is remarkably effective in stage III and IV base of tongue cancer with 100% of patients completing the protocol alive to date. Although some patients required persistent percutaneous endoscopic gastrostomy use, no patient experienced significant enough toxicity during the protocol to delay or withdraw from treatment.


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3777 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
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Thank you so much Cookey,

As you may be know, to be told there is not a lot they can do apart, from cut your tongue out and voice box and the chemo and radiation may help some what, they don’t know till they try, is a lot of help when you feel so desperate, like you do when your facing death .

I don’t think I’m brave enough to have total tongue and voice box removal, but if I do rely on chemo and rad treatment, will this give me any longer to live with eradication the swelling and speed of the cancer cells is what I need to know, some how.

My problem is all my care and lots of it, is in Canada, there I will only get treatment to numb the pain and lots of palliative love, as we cant afford things like operations, and Chemo there and I have no medical insurance there also, so if I have treatment or chemo I have to have it in the UK alone and what state ill be in after that I have no idea.

Thank you for your kind words and Ill keep writing as long as I’m able.

Kind regards

John



Thank you so much Doctor,

I wonder if I showed it to my doctor, he would try this, may he does not like new trials, as they do not have enough proof of getting better results with out more trials.

I hope you can find other trials, I can may be go on, even though it is not proven yet, I am desperate to live through this cancer, any way possible, if I can have some quality of life also.

Thank you for your time it’s a great help.
 
Posts: 35 | Location: Blackpool | Registered: 28 August 2009Reply With QuoteReport This Post
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I cant imagine how that feels my friend.I sat in the room with robin when they said the cancer was back and there was nothing more they could do and to this day i dont now how he found the strength to stand up and smile and shake the mans hand and thank him.I would have been a screaming gibbering idiot.

Perhaps you could do induction chemo first as they do in the states and see how things go ,maybe put off the big decision for a while and see if that works first.I dont know what to say really a lot has to do with age strength mental attitude the desire to live at all costs..there are so many variables.Somepeople will just go straight for the full monty,some will say no to everything but perhaps they dont know what an unpleasant end to life oral cancer untreated can be.
I still think you should ask your doctor the questions i suggested and then see how the answers make you feel.


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 669 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
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Yes this is an unknown road to me, its not affecting me so far and I’m not to worried, because I feel so strong and healthy, but when I am finding it hard to swollw and then cant breath, I would think it will be the start of hell.

I hope I can get something to slow the cancer down and srink it to a livable size, so I can get a while longer out of it to live, not much point having my tongue and voice box cut out, what quality of life is there in that, unless you know some one who has had it done and is living a reasonable life.

Id like to try this new Drugs coming on the market that seem to be working to srink the cancer and help for a longer life but I have no idea if the NHS well prescibe them to me.
http://www.ncbi.nlm.nih.gov/pubmed/18528311

If you hear of any new trials I can take I'd like to know about it.

Thanks for all your kindness

LMTU
 
Posts: 35 | Location: Blackpool | Registered: 28 August 2009Reply With QuoteReport This Post
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lmtu,

I wish I could comment on your last link but I'm a dunce when it comes to some medical reports. I need a translator.

It seems you're doing your research no matter how difficult it is to undertake and I commend you for that. I have a question: of what country are you a citizen? You mentioned upthread something about Canadian family or that perhaps you're Canadian, but ineligible for their health plan. All Canadians are eligible for healthcare although the details vary by province. You'll get world-class treatment there as well as in the UK. If I had a choice I'd go to wherever I'd have the best support from family and friends. This is one that you can't do alone.

I am so sorry to hear your news but also know that there's hope. Take care, buddy.

Mimi
 
Posts: 593 | Location: Sacramento, California | Registered: 16 January 2008Reply With QuoteReport This Post
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