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Author Topic: First Big C .treatment tomorrow - wish me luck!  (Read 28054 times)

GeordieGirl

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #60 on: June 10, 2015, 09:35:21 AM »

Thanks Limpy.

The good news - my consultant was overjoyed at how the tumour has responded to treatment. He insisted on putting the photos on screen to show everyone and made me take photos of them with my phone. He asked three times if I'd been meditating - I haven't but I have been following a nutritional protocol known to have benefits. It looks like he'll be able to decrease the number of sessions needed to blast the tumour to oblivion. So not just good news, but the dogs b''cks  :)

Unfortunately where I feel decidedly uncomfortable is the preventative treatment the Prof wants to undertake. Although at our last meeting I explained very clearly why I would not take chemo (and the Prof was happy with that), we also discussed external radiotherapy and I expressed my concerns at that too. Yesterday however as soon as I got there I found myself on a conveyor belt to measure up for the external radiation. I had a real strop about it and ended up going back and forth between departments to explain.  My instinct was (and is) screaming no on this, and I really didn't appreciate being pushed along on something without prior warning.  Under pressure I did end up having the CT scan with tattoos where the entry points would be,  I now  have two weeks before the treatment is due to start though so I've a few weeks to investigate, research, read, read, and discuss further to make my mind up on this.  (Perhaps meditation will work on this?  ;)  )  The external radiation isn't for the tumour, but is preventative - Prof wants to remove a nearby lymph node that's not cancerous but has a percentage chance of becoming so.

I feel distinctly uncomfortable at ignoring my instinct (it's by following it that I've got onto the tumour blasting treatment), and it's also the first time I've felt the appointment hasn't been patient-centric but simply doing what they always do.

A friend is highly involved in a cancer charity and mentioned how statistics can be misleading as they cover so many different cases, including a wide number of people who simply go back to all the bad habits straight after treatment, without eliminating factors that have a hand in the disease. I've found that reassuring (we have made huge changes around here), but I'm still unsure whether I have the courage of my convinctions on this. I know if the lymph gland does become cancerous I won't be able to avoid surgery, however I have to weigh up the chances of that happening with the side effects of the radiation. I feel it's a little like Russian roulette at the moment....

Anyway, in tumour-busting celebration I allowed myself a night off the nutritional plan last night and we went out for a fab Italian meal and a little too much red wine. This morning my sore head reminded me why I can't do that too often - ouch !

GG x
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groundhog

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #61 on: June 10, 2015, 09:53:42 AM »

It's a difficult dilemma - if only we had crystal balls :)
I faced an agonising decision prior to my op - my instinct said NO leave well alone but the surgeons thought otherwise - every MRI indicated ovarian cancer and even though they didn't quite agree with that,  they didn't know what it was.  After 3 years of deliberation I went ahead - the rest is history - it went wrong and I ended up with perforation on my bowel.  But the surgeons also said that even though they didn't find cancer,  they found a mess which could have strangulated or killed me had I required emergency surgery.  It's so hard to know what to do but what little I know of you,  I'm sure you will make an informed decision which will be the correct one. 
( can you share your diet with us - I need a diet that maximises healing ).

Good news on your progress so far though X

 :foryou:
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Limpy

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #62 on: June 10, 2015, 10:10:22 AM »

YIIIPPPPEEEEEEEEEEE

Regarding the tumour size.

Don't envy your decision about the radiotherapy, but I know nothing about it.

Idle brain dump type thoughts -

- How long would it go on for?
- What could the side effects be?
- %age chance of side effects?
- If you didn't have it, what would happen?
- If your Consultants wife,mother,girlfriend had got what you have, what would he want for her?
- Have you got your consultant's phone no. to chat?

Sorry, I know it's just ramblings, but I always feel better when I know the numbers.

I know your instinct says no, but several years ago OH persuaded me to go to Poland for a new type of treatment for MS. It was so so against my instincts, oh and that of all of the UK MS consultants I'd had dealings with. Long story short, I went and it helped massively (well it did after a 2nd go) I was glad I did it in the end, even though I was @hit scared.

Lots of hugs

:hug:  :hug:  :hug:
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Greenfields

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #63 on: June 10, 2015, 03:39:58 PM »

Just wanted to wish you well GG xx
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BrightLight

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #64 on: June 10, 2015, 04:42:40 PM »

Great to read your news - can't be easy deciding on whether to have certain treatments, wishing you well with the decision.
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Hurdity

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #65 on: June 10, 2015, 07:03:36 PM »

Great news that your tumour responded well but sorry to hear about the other issues re radiation. I've never had to face anything like this nor with close relatives, but do hope you manage to sort out what's right for you that you feel comfortable with. Your positive attitude will go a long way  :)

Sending hugs

Hurdity x
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dazned

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #66 on: June 10, 2015, 07:28:23 PM »

So glad you have had really positive results   :cancan:

And that you indulged yourself with a lovely meal. :)
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mazzy

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #67 on: June 10, 2015, 08:41:50 PM »

Good news on the Tumour and really hope that you can sort the right treatment out for you.  :foryou:
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CLKD

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #68 on: June 10, 2015, 10:08:16 PM »

I had 5 or 7 lymph glands removed from the affected arm-pit, all clear, following which I had pre-cautionary radiation treatment with no ill effects.  The Surgeon and Oncologist advised this, as I had undergone 2 lots of surgery and it was to 'zap' any cells moving around.  The affected breast looked like it had been out in the sun for too long  ;D

I had a few seconds treatment daily for 4 weeks, not including weekends.  It took longer to undress/dress than the treatment session  ::).  How long would your 'zaps' be for and what's the problem if they get rid of the cancer?  How likely is radiation to 'cause' spread to the lymph glands, ask your Surgeon or Radiographer, not Dr Google or some such. 
« Last Edit: June 11, 2015, 05:21:53 PM by CLKD »
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GeordieGirl

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #69 on: June 11, 2015, 08:00:02 AM »

I had a few seconds treatment daily for 4 weeks, not including weekends.  It took longer to undress/dress than the treatment session  ::).  How long would your 'zaps' be for and what's the problem if they get rid of the cancer?  How likely is radiation to 'cause' spread to the lymph glands, ask your Surgeon or Radiographer, not Dr Google or some such.

Unfortunately CLKD, asking my consultant was fruitless - I was given lies on this. When I questioned the amount of radiation, he explained we're surrounded by radiation in our daily lives and it's not much more. Absolute b*llocks. The amount of radiation used in external beam therapy is 5-8000 times that of an XRay!  He mentioned briefly one side effect without going into it in more detail..   I do not like being lied to or patronised and I will not be pushed or pressurised into a treatment based on this.

The side effects? Urinary and bowel incontinence are common though these may clear after a while. (In few cases not). Both bladder and bowel will be unable to hold the same capacity and MacMillan provide special cards so when you're out and you have to go, you can show them in shops to use a toilet urgently. The bladder can need to be emptied every 30 minutes and when you have to go, you HAVE to go....or feel a warm trickle down your leg.   There's even a charity set up to help those suffering from the effects of pelvic radiation.  Needless to say, this would be life changing for me. I'm very active, I travel widely both UK and overseas and I am also highly reluctant to inflict this on my body without a desperate need to do so.

This radiation isn't for the cancer - the lymph node isn't cancerous. This is preventative - as was the suggestion of chemo. The fact I'm being persuaded to put up with life changing side effects for a 'might' is one thing, the fact I have been given scant, incomplete and incorrect information is another thing and doesn't fill me with confidence at all.

'Dr Google or some such' provides excellent resources (look at this forum!!!!). I am not some teenage girl spending my time on magazine sites, but instead casting a wide net that includes Univadis (via a medical friend's login); PubMed; Cochrane Library; as well as a wide number of natural resources. Although in general I find the NHS sites somewhat biased and tend to avoid these (a lot of the info is written by Datapharm, who are a conglomeration of pharmaceutical companies), I found the Macmillan site refreshingly honest and supported by case studies.  On cancer forums I have found people who have undergone the radiation and are struggling with the side effects.

Help in this has come from unusual places. I posted on Facebook and one of my friends (a Dr in physics working in research in Zurich) has sent me some research material from her colleague's PhD.  Another works closely with a leading doctor in a UK Alternative Cancer Charity (whose patrons include royals, as well as leading medics) and last night I ended up with a two page email from the founder. It was reassuring in that much of what she suggested I am already doing, there were a few extra protocols I can include.  Some old friends have popped up with their own stories.

Should the node need removing, there are also other options - laparoscopy (key whole surgery). This is also a fall back if it does show signs of becoming cancerous.  Again this wasn't mentioned by my consultant.

Had I not investigated, questioned or challenged the medical profession, by now I'd have undergone a 5 hour operation with a colostomy. Instead I am having treatment for a tumour which is showing amazing results. Whilst the consultant believes that meditation may be helping the treatment along, I am more convinced of it being the nutritional protocols - which have been as carefully investigated and researched as the conventional options.   

I have promised my partner that I'll keep an open mind over the weekend (I'm off camping with 100 others so will be distracted anyway), but on Monday it's likely I'll be emailing the consultant to withdraw my consent for the external radiation.  It may be right for some, it may indeed be essential for some. It's not right for me.

GG x

« Last Edit: June 11, 2015, 08:04:09 AM by GeordieGirl »
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Annie0710

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #70 on: June 11, 2015, 08:42:21 AM »

GG

I am sure you will make the right decision, whichever course that may be.  Your research is amazing and how you absorb the information

I would be totally and utterly frazzled by all the conflicting info

It's also great news how much the tumour has shrunk

I just know you will decide on the right action to take

Lots of hugs
Annie xxx

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GeordieGirl

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #71 on: June 11, 2015, 09:02:45 AM »

Thanks Annie.

In a strange way I have to say I'm enjoying the journey in that I'm learning sooo much. I'm naturally curious and also cynical when I can tell someone is bullsh**g me, as my consultant was on Tuesday - it's only natural that I'll come home and find the info myself if not given it.  As indeed we're all doing on this forum - how many of us have used the information on here to confront our own GPs when we know and feel we're not on the right paths?  Coming from a family of medics probably means I'm even more cynical about the system than most  :)

The hardest part in this is not keeping my own spirits up (or knowing what feels right for me) but rather keeping my man on board. I've done months and months of research whereas he's hearing everything second hand from me and it doesn't have the same strength. He's scared and last night he had a huge migraine which I'm pretty sure was stress induced. He was massively reassured when the email from the cancer charity doc covered most of the things I've already been doing - not that he doubts me, he's just never come across this before and worries.

Anyway, despite what's going on in my @rse, I'm feeling quite fabulous and it's even better this weekend as we're off camping  :)
GG x
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Annie0710

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #72 on: June 11, 2015, 11:26:17 AM »

And isn't it meant to be lovely weather ? Hope you have a lovely time



Annie xx
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CLKD

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #73 on: June 11, 2015, 05:27:15 PM »

Such support from other places other than the NHS! well done you!  I can feel a book coming on  ;)

I remember a Surgeon telling a friend: 30+ years ago: that he didn't believe that the amount of chemo given was correct, that he felt it was too much and that the amounts should be tailored to each patient.  However, no-one at that time was brave enough to take the step of cutting back the doses given.  He thought that treatment should have been like those of animals, a far lesser dose that was prescribed.  Who knows, Life is Trial and Error.  Whilst under-going my treatment I felt that I had taken on the cancer and was doing something about getting rid of it!

Also - why would a lymph node require external radiation ……… where is the node situated exactly that it would be affected ……….  :-\ ……… lymph nodes are there for a reason : to fight infection? :

Enjoy your camping trip! Is this Glamping, under canvas, yurts, mobile 'home' ……… if you feel well despite treatment then get out there Girl, Go for It!
« Last Edit: June 11, 2015, 05:32:02 PM by CLKD »
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GeordieGirl

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Re: First Big C .treatment tomorrow - wish me luck!
« Reply #74 on: June 12, 2015, 08:59:52 AM »


Also - why would a lymph node require external radiation ……… where is the node situated exactly that it would be affected ……….  :-\ ……… lymph nodes are there for a reason : to fight infection? :

Enjoy your camping trip! Is this Glamping, under canvas, yurts, mobile 'home' ……… if you feel well despite treatment then get out there Girl, Go for It!

Exactly CKLD - not only is the node there for a reason but it's not cancerous. The Prof wants to remove it just in case there are future issues.

I'm feeling fabulous and the photo I've taken of me yesterday "during treatment "shows me looking slim and tanned, sitting in the sun outside my camper van - happily recuperating mind and body while those pesky cancer cells are shriveling up inside me. :-)

Have a fab weekend everyone everyone,
GG x
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