Immediately after diagnosis, I started out from a point of just assuming that my cancer would return at some stage. Then, one day quite out of the blue, about two or three days before the surgery, it just hit me: Maybe that won't happen. Prior to that I had myself written-off. Both my parents and a sister had previously been taken, all by different forms of cancer. They were treated, it was initially successful to varying degrees, but then it came back, metastasised, and that was that. So I just assumed this would be the case for me. Since my treatment, two more sisters have been diagnosed, with two new forms of the disease. Six people out of nine, all different cancers, all different outcomes. I beat mine, one sister beat hers and the other's prognosis is looking positive. All outcomes are possible. Allow yourself to believe that you can win. So, once I completed my treatment, and my 12 month scan came up clear, I more or less resolved that I was going to assume that the cancer was not coming back. That's easy for me to say - in my case, the stats indicate that 6-18 months is the crucial period. Your cancers will have a different set of data, so talk to your clinicians about that. So what should you do? I think I reached a conclusion that if the objective of the treatment was to save my life, then it should be a lilfe worth living. If one were to look over one's shoulder the whole time, then that could be viewed as a reduction in the quality of the life which has been saved. So, consult a psychologist to get their advice and assistance on reaching a state of mind and attitude which works for you. I can only explain the thought process which worked for me. Everyone is different, so find a therapist who you like, and work with them to achieve the outcome which works for you. Regards, Mark.
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Just found out today that my sister has stomach cancer (age 71).
Another sister has been cancer-free for over 12 months, after breast cancer (age 68).
I myself had T2N1M0 SCC in the tongue in 2012 (age 43).
PRIOR to all this crap, we lost another sister to melanoma (31), our mother to bowel cancer (67) and our father to renal cancer (84).
To say we're over it is an understatement. On the plus side, we're having more luck fighting it off than we used to.
Luckily, I happen to have an appointment with my psychologist tomorrow, just by co-incidence, so I'll unload my frustrations on her.
End of rant.
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Believe it or not, I know where you are at. Check my profile to see my background story - similar diagnosis, but T2N1M0 and in the tongue, not throat.
I never had FU-5 (the acronym just begs for another name, doesn't it?), but I had the rest. I managed to avoid a peg by the skin of my...tongue.
BUT...the treatment delivered. I am here, and I am well again. Your partner's time will come, the nightmare will end. Be sure to consult your own therapist(s) often. Make sure they know what's going on, actively seek their support.
The thing that also seems to be missing from your story is cocaine mouthwash. Ask the treating clinicians if it would be suitable. However, it would seem that your partner's pain, (at least at the moment), is worse than mine, because the patch and OxyContin worked pretty well for me.
In relation to your partner's doctors, be calm, methodical and detailed in how you deal with them. Write stuff down if needed. Get second opinions if you want them. Always be polite, but don't take a backward step, and keep persisting until you get the information you want. Yes, it is much easier said than done.
Ask me anything you like, and I'll try to help. I can probably also put you in touch with my wife, who was my carer.
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Hi Mrs B,
I wish I had an answer for you. Like Emily said, your reactions are normal. You can only base how you feel on your own experience, and validation of that is really...automatic. It just is.
My experiences with the disease, in family members and in my own case, have been on both sides of that fence. Each case is so individual. I would probably recommend counselling, in your own time.
Be assured I will pray for you and your husband.
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Best of luck with your treatment.
You should check with your treating clinicians as to what kind of condition you can expect to be in during and after radio. Speaking purely from my own experience, there is no way I could look after anyone else but myself - and sometimes not even that - for a period of about two-three months in total.
Radiotherapy programs are all different, and highly customised to the individual, so my experience may not be yours. So please check with your treating practitioners. It may be that you will need to engage respite care for your wife.
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Not sure where to post this, so I just went for general. I have a question in relation to colonoscopies, which may be answerable by anyone who has had one or more.
Yes, I'm a cancer survivor, but not colon cancer. I've had lots of colon polyps removed over the years, but ended up with cancer in my tongue, of all places - yet I'm a non-smoker. My delightfully funny wife (not) declared that it must have been from talking too much crap. See what I have to put up with?
Anyway, I've always had routine 'scopes in the private system, but for financial reasons, this next one will be at St Vincent's public in Melbourne. I have always been asleep in the past, with a consultant anaesthetist administering the light GA / sedative. I have not recollection of anyone even so much as laying a hand on me.
The literature on how they do this at St V's is a little bit...vague. Has anyone out there had a scope at St V's? Can anyone share their experience? Did you feel anything? Was it "lights out" - asleep? Any recollections?
I have heard the odd horror story about scope sedatives in the public system.
Thanks for any assistance available.
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This issue is really complex. Firstly, most folks who I've spoken to about this had Squamous Cell Carcinoma (SCC) of the mouth, not melanoma.
Secondly, there's different intensities of radiation, and different places which they direct it at. In my case (oral SCC), the side effects were extreme at the time, and took a long time to recover from (3-6 months), but I stress that this is not everyone's experience. Personally, ulcers throughout my mouth made pain a major, major issue. Unlike your dad and many others, I did not have any kind of feeding tube. BUT, I was 43 at the time, and hence my recovery and quality of life afterwards has seriously surprised the doctors. Once again, others have not had this recovery experience.
So...my advice is to book an appointment with the radiation oncologist. Write down all your questions, and get them all answered to your satisfaction. If you still have questions, then pursue the issues once again. You and your dad must have answers, to make an informed decision.
1. Prognosis with radiation.
2. Prognosis without radiation.
3. Quality of life post-treatment.
4. Side-effects during treatment.
5. Permanent side-effects.
6. Process of administering treatment - is painless, but can be traumatic for some, esp. those who may suffer claustrophobia or similar.
Product recommendations (subject to clinician approval, of course): Peter Macallum Cancer Centre in Melbourne make a mouth wash under their own brand. Marvellous stuff.
If and when oral intake is needed, Nutricia make Fortisip protein drinks which taste good, and did not aggravate my ulcers. Must be factory-mixed. Self-mixed powder products STUNG my ulcerations because of undissolved particles.
All the best to you and your father on this difficult journey. Don't hesitate to ask if I can be of further assistance.
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A few observations from the information you've posted so far, and some questions:
First and above all: I could not advise you more strongly to AVOID GOOGLE LIKE THE PLAGUE. Others on this site will say the same, almost without exception.
Your information MUST come from YOUR specialist doctor/s. Even my GP at the time gave me wrong information - told me I was stage 3 of 4. WRONG! No, sub-standard information is not just the way things work in the public system. Communication can break down in any system, any time. You just need to advocate for yourself.
You would be a CAT A patient (maybe a different name in states other than VIC), and resources will be made available to you. You are entitled to seek explanations, and they must be provided. You are entitled to question stuff that doesn't make sense, and again, explanations will be provided. If you cannot get an explanation, my advice is to calmly and politely escalate until somebody in authority is found to provide the information. Sometimes they don't have the answers, but when that happens, they should tell you.
If you are calm, polite and explain yourself clearly, the clinicians will treat you with a great deal more respect, and will actually warm to your desire for knowledge.
All of my advice comes from my own experience. I won't bore you with the details of those experiences unless you ask me to. I'm happy to explain if you ask me.
1. Is your tumour a SCC (squamous cell carcinoma?
2. Do you know if there has been any spread into the lymph nodes? My cancer had spread, but I still beat it.
3. Do you know what your official staging is? For example, mine was T2N1M0. The T N M will be the same, with different numeric values in between.
4. I too was a non-smoker, a very light drinker, and HPV negative. You're right, the pool of people from this demographic is getting larger, and they don't really know why at this point.
5. You need to make sure that all your treating professionals are aware of your pre-existing anxiety, and any other mental health issues (depression, etc).
6. This phase you are in now, between diagnosis and a detailed plan, is BY FAR the worst period psychologically of the whole process. See your GP and obtain some medication to get you through this phase. I was given valium - worked like a charm. Discuss with your doctor.
7. I too, wrote myself off. I didn't tell anyone at the time. I thought that the treatment might work initially, but that the cancer would eventually come back and I would die. Then, out of the blue one day, about 2 weeks post-diagnosis and about a week before surgery, it hit me: what if they take it out, and it doesn't come back?
8. My major operation was Feb 5, 2012. I am now officially CURED.
9. I have few minor side-effects, a far better outcome than predicted.
I'm nothing special, Paul. I engaged with my clinicians, took their advice, asked questions, challenged them to explain, reported all information to them, and carried out my end of the plan. They did the rest.
You can do it, too.
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I hear where you're coming from, mate. I was 43, married with a 6 yo, when diagnosed with a squamous cell carcinoma of the tongue, which had already spread into my lymph nodes. I've seen some of your posts, and it would seem that you need some support.
I am on-line now, you have my undivided attention if you want to post or message me. Sorry I couldnt respond earlier - been busy with work.
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Sorry to hear your diagnosis. My cancer was, well, at the complete other end of the digestive tract, but my mother had it in the bowel (a long time ago) and as a result I now have colonoscopies about every 1 or 2 years.
As a general cancer thing, this stage you are at is the pits. You know you've got a problem on your hands, but you don't know the magnitude of it, or what is in store.
1. Don't google it.
2. Get your info from your doctor, and do so whenever you need it.
3. Ask lots of questions, fully understand, don't consent to what has not been explained.
4. REMEMBER: People survive, lots of them. Especially bowel cancer patients.
5. Don't theorise or let your imagination run away with you, in regard to what has not yet happened. Deal with things as they arise.
6. Get counselling, regularly, from your own psychologist (in addition to Cancer Help Line, etc). You can get at least 6 consults on Medicare, (and probably more), via referral from your GP.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.