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Author Topic: Lung Secondaries  (Read 36844 times)
marg
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« Reply #150 on: May 29, 2012, 04:48:09 PM »

Hello, my name is Margaret and I have secondary bowel cancer in my lungs. Had RFA and now 1 tumor is still there growing slowly, saw my Oncologist yesterday and he is sending me for a PET scan and then who knows, Please can you help if you have similar? So scared and would love to hear from you
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alisonhelen
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« Reply #151 on: May 29, 2012, 05:46:28 PM »

Hello Margaret and welcome to our forum,

You are not alone Margaret, there are many of us on here with secondary lung tumours, some have had treatments, some not, there are lots of different stories, no two stories the same, many of us live successfully and may I add happily and reasonably healthily with them.

I have tumours on my lungs for the 2nd time, 1st time was January 2011 and they were treated successfully with first line chemo, FOLFOX, which is Oxaliplatin and 5FU, it also rid me of liver tumours, all but one which was treated by RFA. This time I have 6 tumours, 3 in each lung. I was offered surgery which was then declined because of the placement of some of the tumours, so now I am on 2nd line chemo, this time Irinotecan and 5FU, in the hope that they will shrink enough for either surgery or RFA.

I have also had a PET scan and must add that it shows up any place in your body which is showing rapid tissue or bone growth, mine showed up what they thought was spread to my ribs and hip, however a bone scan showed that this was not secondary bone cancer but new growth on my ribs where I had broken them about 2 months previously and my hip 'problem' was also not spread, but osteoporosis! So, it really takes an expert to translate what they see on the scan into an accurate diagnosis! i found this link about PET scans and how they are carried out for you, http://cancerhelp.cancerresearchuk.org/about-cancer/tests/pet-scan

Do read some of the stories on the forum, a lot are inspirational and will help you to realise that living with advanced cancer can mean you are able to have a reasonable quality of life, many of us still work, bring up families and enjoy an active social life, the answer is to keep positive, enjoy each day, don't waste a day and keep smiling! I write a blog if you're interested and the link is http://alisonhelen.blogspot.co.uk/

Do feel free to post as many questions as you like, there is usually someone here to give an answer and others will follow. Also we love to be kept updated with everyones story, so do let us know how your PET scan goes and update us with the results. Of course there is also the nurses helpline, but I'm sure you know about that as you are a HITW menber!

Lots of luck and best wishes, Alison
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marg
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« Reply #152 on: May 30, 2012, 01:31:35 PM »

Thankyou for your quick response, busy at the weekend with family arriving but will be back on line next week. Many thanks and very interesting. glad you are keeping well
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suze
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« Reply #153 on: May 30, 2012, 03:10:40 PM »

Hiya.

Alison has done a good job.

If you read the other posts in this thread you will get an idea of who has had what in terms of lungs.

I was initially on a palliative chemo regime when I got secondaries on both sides of my lungs. That was successful for a while and last year one of them was growing again and I was offered surgery. Luckily I was able to get this done key hole so i recovered pretty well.

The  PET scan is not scarey on the day. But the fact that can expose new little growths is scarey.

If you have specific questions feel free to ask

All the best.
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
marg
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« Reply #154 on: May 30, 2012, 07:03:07 PM »

Thankyou, been having a read and all sounds so similar to my own story, will continue to follow you all and keep you updated. Its SO great to chat to peeps in the situation that I am in. Stay well and thankyou
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Hazel
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« Reply #155 on: May 31, 2012, 11:04:05 PM »

Hi Marg... i have secondaries in lungs too they have been sitting there for 5 years now, they are growing and i have more than i started with at the last scan the avastin i have was holding them at bay i have never had any symptoms from them and have carried on as normal. I had a PET scan which highlighted the new tumour in the pelvis but didn't however pick up the lung mets as they were so small, CT scans seem to do the job with me.
Good luck and feel free to check out my blog the address is tagged below!
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Gypsy
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« Reply #156 on: June 03, 2012, 10:29:49 AM »

Hi, I'm very, very new to all this too, just like Marg. My name is Cath and here's my story. Was diagnosed with colorectal cancer 14 months ago, picked up by screening, no symptoms that I was aware of and I was fit and well. Had a small early tumour that was successfully treated with surgery, nothing in lymph nodes and no need for chemo. Bounced back from laparoscopic surgery and was fine- no ileostomy. Was told ( several times!) that I was at low risk of recurrence and would therefore have annual ct scan for follow-up. Had ct 7 weeks ago, heard nothing and thought it strange but that no news was good news. Then received a 'phone call to attend the chest clinic down in Inverness (I live in the north Highlands). Was then told that there was something in my right lung, that malignancy best explained it but they didn't know if it was bowel cancer, some other form of cancer or something else. There was nothing showing elsewhere on the ct. Agonising 8 day wait for needle biopsy to be performed and then confirmed last Wednesday that it is a secondary bowel tumour. It looks big to me but they say it is small and slow growing- but I'm worried that it's come up so quickly from not having been detectable last year. So much for low risk but then I guess it was never no risk -and that was then and I have to deal with now. I am having a PET scan tomorrow- have to go all the way to Aberdeen for it, a 4 and a half hour drive. But we (husband and I) have booked dinner and B&B at a small country hotel on the way back so will come home on Tuesday. We'll both be shattered. At least the PET doesn't hurt, but like you all say, it's what it shows.
I don't need to tell of my emotions because clearly you all know, only too well. The worst thing for me has been crippling anxiety attacks in the evening( not good for me) but I'm ok through the day when I can be outside. I've now got some Rescue remedy and cammomile tea. But the last 2 evenings have been better and I put that down to reading this forum and also talking to Louisa, one of the nurses of this charity. It's been the only rays of light in a sea of fear so far. But I still can't get to sleep without a sleeping pill- and not sleeping makes it far, far worse so reckon it's the least of my worries at the moment, although I hate taking pills as a rule. I am very fit and active- walking, cycling horse riding and gardening etc, always on the go. I have always looked after myself, eat the right things, have never smoked and healthy weight etc etc. I've tried so hard to be well and I feel fine, apart from the anxiety! The consultant has mentioned surgery but says it is critical now that I get the right treatment- and I guess that depends on the PET.
I turned 60 in February but I'm afraid not much of a diamond jubilee for me at any rate.
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« Reply #157 on: June 03, 2012, 10:47:52 AM »

Hello Gypsy

not much I can say really, other than I feel for you very much. You must have been devestated when told of the lung mets, but at least you are heading for treatment. I am in a similar position, had PET CT Friday, for liver mets, but I also have lung mets which to a certain extent has been put on the back burner for the time being as they deal with the liver. The result of the PET CT will determine which direction treatment (and hopefully surgery) goes. You must be used to it by now, the damn waiting that's involved in every stage of treatment.

Pleased that you have been receiving help from the BBC team, good luck, and do keep us informed
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rose57
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« Reply #158 on: June 03, 2012, 11:00:03 PM »

Hi Gypsy, it must have been a terrible shock to find out you have a secondary, and completley understand how you much be feeling.  I am glad, however, that reading this forum is helping.

Sharing your experience with others in a similar situation does help, and there are some wonderful people in this forum who will support you.

Rose
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suze
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« Reply #159 on: June 04, 2012, 08:46:31 AM »

Hiya Gypsy, yes  -- we do know how you feel ... and it is a sickener when you think you have it beat to find it festering still inside you ..

I am very sorry to hear you are back in the cancer drag .. but hopefully the thing on your lung is operable and your general good health will be an enormous help to you in recovering from that too ...

My lung was operated on in January and I am not really aware of it now ... managing to walk and even cycle quite well again  .. though I do need longer to recover after exertion these days I think  it is quite amazing how well I can still breath with less lung, actually!

I hope you are able to get surgery too ..but even if you are not suitable for that, there are other treatment regimes and it certainly does not mean there is no hope for you with lung secondaries ...

I know we all have to find out own ways of dealing with cancer ...and its emotinal imact ... I certainly think you shouldn't beat yorself up for needing a few drugs to get you to sleep sometimes, it's a sensible option when you are very stressed ... I don't use them a lot, but have some in especially  for the waiting times, as that is when I get most anxious .. and maybe at other times if my self-help mental tricks are not working well enough  ...

Keep in touch and let us know how you get  on ...
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
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« Reply #160 on: June 05, 2012, 07:43:25 PM »

Hello to both Margaret and Gypsy.

I have also been where you both are! I have had lung mets with no symptoms, all have been removed 2 by re-section and 1 by RFA. I had a PET scan last year for my liver which luckily was clear and like Hazel seem to think ct scans have shown mets better.

Waiting for results isnt easy in fact its b*****y awful  Cheesy

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Jill Smiley bowel re-section 2006 (followed by 6mths chemo 5FU) lung mets removed by thoracotomy in 2008(followed by chemo cape cetabaine and oxyplatin),2011 and by RFA 2010
Gypsy
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« Reply #161 on: June 09, 2012, 03:04:20 PM »

Yes, I'm finding it very difficult and stressful but then the scan was just last Monday and I also think that I am only one among so many folk who are all equally important and who will all be 'the waiting worried'. (Although I have to say that on the day, last Monday, the other 3 guys who were there looked very relaxed and I was the only one clutching onto husband's hand)! I was so glad to get home on Tuesday, after the night in the hotel- bed was comfy at least! Now I await the 'phone call which will hopefuly be soon. I will feel so much better when I know exactly what is going to happen and I have been 'boning up' and also had some advice from BBC nurse on questions to ask re -treatment options. Still hoping it's surgery though.
I still find the daytimes fine but the evenings anxiety- ridden. Tried to be heroic on Thursday night and not take a sleeping pill and although I probably got a couple of hours, it was filled by a horrible nightmare. So last night, popped a pill and slept like a log with no awareness of dreaming. Time to tackle this particular issue later, I think.
I am so reliant on this forum now. After all, it's here day and night, (especially night), when all other avenues (other than the Samaritans, I suppose), are closed. You feel as though you're talking to friends on here and I have to say that I am in awe of all of you.
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« Reply #162 on: June 09, 2012, 04:54:55 PM »

Hi Gypsy,

Like Jill says waiting for results really is b****y awful;  I'm sure all of us  can empathise with you  and  this forum is indeed here for you whatever time .
 As Suze and you yourself said dont beat yourself about the sleeping pills.  I have used 'Rescue Night Spray'  (which you just spray on the tongue)when I wake up in the middle of the night and can't get back to sleep, although I admit that getting off to sleep isn't a problem  for me at the moment.
Love
Mary xxxx
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KarenB
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« Reply #163 on: June 09, 2012, 05:38:18 PM »

Hi Gypsy

I know how you feel.i've got a ct scan Monday and the results Thursday and to say I'm stressing is an understatement as my last one wasn't good news.
I can echo the sentiments about not beating yourself up for using sleeping tablets. I've used lavender spray and balm for months. But also have some prescription anti anxiety pills that I take when I need to. Needless to say they've taken a battering this week.
Good luck for the results.
Karen
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alisonhelen
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« Reply #164 on: June 09, 2012, 06:23:27 PM »

Hello Gypsy/Cath and welcome to our forum!

I have just read through all your posts and can tell you that what you are going through is very 'normal', I know that doesn't make the situation any better and you are probably thinking 'I don't feel normal' but hopefully it's reassuring to think that most of us with a similar diagnosis to you felt petrified, anxious, didn't sleep, worst case scenarios played like a constant loop in your head...... But, we are through that now, yes, I hate the time when I am due a scan, because it doesn't matter how well you feel and I am the same age as you, the diagnosis following the scan can always throw up a recurrance and then you think 'Here we go again!' I spent many, many nights, walking the floor, scouring the internet (beating bowel cancer did not have a forum 2 years ago) playing mindless games on the computer, planning what little future I thought I had left, when first diagnosed 2 years ago and as an anxiety sufferer for over 25 years I thought that having to cope with cancer would tip me over the edge. I went to my GP and she changed my medication (anti anxiety medication has changed for the better over the years) and within a couple of weeks I felt like a new woman, I coped with surgery, being told it was in my lymph nodes and a few months later when it was staged as advanced, yes, on the days of 'telling' I had a few wobbles, but I could cope. We gradually decreased the medication and now I am still anxiety free, or can cope well on days that throw up 'suprises', like being told I had a brain tumour (later downstaged to benign) and a few weeks later told I had spread to my bones (later changed to osteoporosis and healing broken ribs).

So go and see your GP and be frank with him/her, you do not need acute anxiety along with dealing with your cancer, it won't help the cancer and it certainly isn't helping you. You need a clear head to make the important decisions you need to make. You need to be well mentally to deal with surgery or chemotherapy. You need to enjoy your life, not worry about how many pills you are popping, if you carry on with anxiety and it gets worse, because it could, you may well end up popping even more pills for the complications anxiety can cause!

Since dealing with my anxiety properly, and cancer made me do that, I am for the first time in my adult life, enjoying life properly, cancer has changed me in more ways than one, I am now stronger and more able to cope with what life throws at me.

Hope this has helped a little!

From someone who has 'been there'!

Best wishes, Alison
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Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
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