I was diagonsed in January - Had gone to my Doctor for over a year with EVERY classic symptom of the disease....she did not listen..I told her I could not breathe...one listen to my back and she diagnosed me with emphysema, ehich my Dad had died of a few weeks before, (so that was March 09) - Put me on inhalers - did nothing - I gained over 40 lbs...I lost that and about 10 more - she told me I was lucky...I went back for more weight gain.....FINALLY when I looked about 11 months pregnant and had 3.5 litres of fluid on my chest she gave me an internal exam and DAMN I had STAGE 3 CANCER...Had full hysterectomy and 3 tumors plus removed in February 2010 - they were not able to get 2 small lobes of cancer as were on my diaphragm so that stayed - I have had chemo every 3 weeks since March and just finished 3 weeks ago - Will have a cat scan next week to see whether the cancer is gone, back, there, somewhere else....I also have problems with my feet - this has gotten worse..I did fall and sprained my ankle, badly, so have been in physical therapy for that but I mean HURT - by bedtime I cannot stand the burning of my feet that goes all the way up my leg, to my upper legs, and rubbing ang rubbing does no good...for my sprained ankle I have found that doing my excercises under the bathtub tap, starting with coolish water and going to COLD feels great....because it numbs everything - I now do it to both feet and upper legs right before bed..I also have the heater on in my bed, even ehen it is 80 degrees outside!! and since it only covers 1/2 the bed I can move to warmth and cool all night....I have been VERY positive since the beginning of this whole mess....I had told my sister, years ago, that by the time I was 32 I would have this cancer, so I kind of feel like I have always had it.....strange but true, so my reaction, when my DR. told me was, "I'm not surprised....I have learned that ALL I NEED TO DO is get dressed and show up..the get dressed part ONLY VALID if leaving the house, otherwise, I just need to "show up" That helps your mind alot, I think..I have 2 daughters and a hubby, My hubby has shut down on me and I am very much alone in this whole thing...to get him to help I literally have to be in tears..very frustrating and very sad...although his work pressures are many, I was #1 when I first came home and now I am barely on his list of priorities, or sure feels that way...feel free to connect with me - ANYTIME!!! Hugs to you, I understand......Believe me - Oh, BTW I live in the USA in Vermont - a little teeny state in the northern part of the US....Hugs....

Hi Ladies

Dot- I can understand where your coming from with friends for me however I'm single and therefore my freinds are all nurses and while they found it difficult, not one walked away! As I say they each have there own strengths some can't cope with the dying subject some can, some want to wrap me in cotton wool while others have me out exploring for exercise - I need each of them! The most difficult one is my friend that I share a house with, she has been a total godsend but is not the best talker, having supported me through everything she went down big time and ended up with depression. We have ended up in a difficult position as she needs to talk about it but I'm probably not the best person for her to talk to but she's not good at talking to the others. Vicious circle, but we'll get there.

Kathym - Yep no problems at the time and still have fingers loosely crossed about the clots. This was only my first (but 2nd time round) so in big trouble if clots kick in this quick, been very naughty have increased my Asperin for the last few days as my injection sites haven't been bruising lol. Decided the odds were much higher with me clotting than bleeding. Help or hinder, buth I think it helps when things get complicated and you have to 'remind' Drs and think ahead for yourself but it hinders when the thought process is distrubted by chemo and the Drs don't realise it! My Drs have a habit of forgetting I'm a patient and at times a lot of what they say goes over my head as this is not my field of nursing. I don't get any aches or pains either, am coming to the conclusion that as others are not complaining bitterely about the taste that my smoking my have a lot to do with it! No fluid on my lungs.........yet!

Eileen - yes it was just like the way people treat pregnant ladies! Think you need to speak to your nurse or someone - why would you need a colostomy if there is no sign of the tumour (not only on scan but nothing on rectal either)? What is upper pelvis (mine was throughout the abdo which I think is outside the pelvic area therefore had spread further than the pelvis, it didn't stop them operating). My Surgeon left a small tumour on the bowel which he said the 3 remaining doses of chemo would sort (interestinly that one ain't come back!). I think you need to press a bit - if they say they can't really say, ask them what further information they need to be able to say. Don't get me wrong they cannot guarentee anything but they usually give advice on which way is best to go (often helped by, if it was you what would you do!) You don't have to take the advice but it should give you some options to consider.

Hi VermontMum, welcome to our group. My first 6 doses of chemo caused on end of problems with my feet, over the last 8 months it has slowly improved and now I just have a little numbness in the toes on the left foot. On Doxil/carbo this time and so far no numbness in feet or hands!

Take care all.

Jackie xxx

Hi all,

Eileen I hope your day was ok with the chemo.

Unfortunately it was a bad day for me, I don't want to put this here because it isn't what anyone wants to hear, but maybe you will be able to ask lots more questions than I should have.

I have developed a secondary cancer in the lung, it has spread through the lymphs so it is inoperable, it has grown since my last chest xray which was clear six weeks ago. They are holding an investigation as to why I was left so long to have chemo, but are saying they are unrelated. My prognosis isn't good, they are going to carry on treating for next two chemo's if the growth in my lungs has grown then I will be handed over to the lung specialists, well I am going to be anyway.

I don't think I will help you girls on your journey, I wish you all well,

Dot xxxxxxx

Oh Dot,

What horrible news for you.I dont know what to say!! Of course you should put it here that is what we are here for.

I know we are all going through different types but I have been having treatment for secondary in the lymph nodes in neck and chest for nearly 2 years and they are inoperable but can be contained so please dont give up Dot,there are so many treatments out there.

Dont you dare stop coming on here where we can support you,we would all worry ourselves sick if we did not hear from you.and that would be no good for any of us.

All the love in the world to you

Speak soon.

Rose xxxx

Though it sounds terrible , there is ALWAYS HOPE!!! Please remain here, you have ALREADY helped in our journey's and please continue to do so.....you cannot leave use now - we need to know where and what with you, as well as needing your wonderful advice, peaceful and thoughtful words..Don't say you will not be with us on our journey's - you are here today, we all are, TODAY is what matters...Please try (very) hard to remember that...We love and respect you and the courageous battle you are fighting - we all are fighting...We HATE CANCER ....But we LOVE Y-O-U!!! Will be looking for a post tomorrow!! Love & Huggles...Becky

Dear Dot

What S*** news, I'm so sad for you but I still need to hear from you regularly so please don't stop posting on here. I don't think there are many questions to be asked sounds more like time for praying that the chemo does its stuff. Do you have any symptoms from the lungs (feeling short of breath before you expect to, cough)?

I've always know that my cancer is not cureable (if thats a word) and I didn't even get that long from my first chemo so I now try and live life instead of just working! You will find your way through this, slowly at first but then hopefully you will come to terms with it. It must feel like the first time you were told you had ovarian cancer, you dealt with it and were starting to move forward and you will again. Its really not what you've got, or how much or even where it is, its more about dealing with it, going for treatments that will help (and that your happy with) and getting on with life. I figure I can't be dying yet simply because I don't feel like I am, I know how the body acts when the end is in sight and I don't have those symptoms or feel like I think I would feel and you don't sound like you have these symptoms either.

Please let us continue to support you - thats what friends are for (even internet friends!)

Sending you internet hugs

Love Jackie xxxxxxxxxxxxxxxxx

Dot ,

Please don't give up hope what ever you do. There is still hope and you are stronger than you think. Until to are told they can't do anymore then you have to be strong and fight. ( easier said I know ) but please please keep on the site and we all will try to give you as much support as we can. xxxxxxx I know we have not met but I have bonded with you all and think about you every day. I really don't know what to say to you. I will be with you anyway as I say as your always in my thoughts... Love as always Eileen.xxxxxxxxxxxxxxxxxxxxxxxxx

Morning Dot,

I have been awake most of the night thinking about you and your family. I was thinking about what has happened to you and there must be lots of questions you need to ask them so I was thinking, if Jackie, sorry Jackie but you are in this thought . Can you make a list of things that Dot can ask the Dr's as you have more knowledge on those sort of questions to ask.

I do hope you stay on hear with us Dot as we are all so worried but hopeful for you. You also need someone to talk to and we are a little team of friends all scattered about the Country who really care for you as we do about each other. If that sounds right. Have you asked to speak with a Macmillan Nurse about yesterday's findings ?

I will go now Dot and will look forwarding to hearing from you today. If you don't want to chat well we do understand but will be sad not to be with you on your journey. Your a lovely Lady so hang on in there.

Lots of love alway's Eileen. xxxxxxxxxxxxxx:love:

Hi everyone,

I just can't get my head around this, watching my family devastated, they have given me a year to live or 18months if I am lucky. I handled the thought of ovarian cancer but this one is so invasive, one that will be hard on my family, my thoughts are not for myself but for those around me. The fact that within six weeks it is inoperable, doesn't give me any reason to be positive.

I had stopped smoking jackie, I have had no breathing problems etc. I am still experiencing chemo problems and it makes it even harder to deal with.

Thanks for all the thoughts and wishes

Dot xxxxxxxxx

Dot,

I don't know what to say to you and another shock to hear the time they have given you, will the chemo not shrink the lung cancer with radiotherapy ? I am sorry for all the questions but I just want you to be here with us and you family. If there is anything we can do for you. ??

We are here Dot xx

Love and hugs xxxxxxxxxxxxxxxxxxxxx:love:

Hi Eileen,

they said they will carry on with chemo for another two sessions, then ctscan and if it has grown I will probably have a bronchoscopy to see what that brings, then I will be managed by the lung cancer team.

Nobody can really help Eileen, but thanks for thinking of us all, I can only be strong for my family as I know they will be for me, it is just the way this cancer progresses that is so worrying.

It all seems so futile, there doesn't seem to be an upside to it unfortunately and that is the hardest part, it is a case of just dealing with it and as you can see I am not at the moment.

Love Dot xxxxxxx

Hi Dot

With no symptoms it must seen very surreal and all the more difficult to cope with. I personally refused a prognosis when offered one they are at best guess's yes there based on experience but its far from an exact science and doesn't take into account the individual nature each of us possess. The passage of time will help you cope just don't push it, I know its hard to think of anything else but that also wastes what time we've got left.

I hope the chemo works, and as the lung tumour is presumable relatd to the ovarian tumour I can't see why it won't, just try and hang in there. The effects of chemo should wear off soon. Did they check you for infections or did that get forgotten in the terrible news?

Hope you and your family manage to stay strong.

Love Jackie xxx

Hi Dot

With no symptoms it must seen very surreal and all the more difficult to cope with. I personally refused a prognosis when offered one they are at best guess's yes there based on experience but its far from an exact science and doesn't take into account the individual nature each of us possess. The passage of time will help you cope just don't push it, I know its hard to think of anything else but that also wastes what time we've got left.

I hope the chemo works, and as the lung tumour is presumable relatd to the ovarian tumour I can't see why it won't, just try and hang in there. The effects of chemo should wear off soon. Did they check you for infections or did that get forgotten in the terrible news?

Hope you and your family manage to stay strong.

Love Jackie xxx

Hi Jackie,

I have read your message to Dot and I agree with you, also surely they would have waited for a few more chemo cycles before putting a time scale on this secondary cancer. And would have thought that the Lung specialist should be the one who has the final call, or bring it up at the MDT meeting next. I still hope its a mistake and for it not to have showed up on the X-ray 6 weeks ago it won't be that big ?

The time before last when I was in Hospital with the infection a 47 year old woman had Lung cancer and had the chemo then was waiting for the Radiotherapy to start at Singleton and then they discovered she had a brain tumour. As you can imagine they were devastated so after tears and everything that goes with it she said they would also give Radiotherapy in the brain as well. The week after ( this is when I was in ) The Dr came and said it was a mistake and the tumour is a very small lesion which they zap after the lung cancer is under control. Well if you could have seen Jan's face when he told her, it was like winning the lottery. So there is alway's hope.

I had my 5th chemo on Tuesday so fingers crossed for weekend when I normally go in with infections. My count was 2.0 on Tuesday so a bit higher than last time. I also had the Neulasta injection last night.

I hope everyone else is doing ok, but my thoughts at this time are with Dot as I am sure yours all are. I hope you are still reading what we are thinking Dot we are here all the time for you even if your up messaging.

Love as alway's Eileen .xxx!www.cancerchat.org.uk/.../love.gif!

Hi Eileen,

I wanted to see how you are doing with your chemo, hopefully you will stay out of hospital this time xxx

Thanks everyone for the lovely words and thoughts.

Eileen they found several tumours all quite small 22mm being the largest, but it is because it is in my lymph glands that they have given me the diagnosis, seems the growth is in my left lung. I did push for the diagnosis because of having had a cancer free one at first, I think my anger got the better of me and I was trying to prove a point about my xray being clear, yet I am now inoperable.

I am a lot calmer now, the right side of my rib cage has been very tender all around my midrift hurts (hurting in back too at times), they checked me out and didn't think it was anything, Jackie I was tested while I was there bloods and urine and everything was fine.

Eileen that is wonderful that they misdiagnosed that lady, I do know diagnoses can be wrong, thankfully it was so for her.

I had my wig fitted and it is lovely, looks so real, it is urchin style very short and blonde, my hair colour is matched perfectly, so I spent ages yesterday playing with it lol

Love to all, keep strong xxxxxxxxx

Hi Dot,

Lovely to see you again, your wig sounds good, lets hope you can maybe go out for a lovely meal with your family when your feeling up to it. I know you prob won't do for a while but that is what is keeping me going, being able to go out and be normal for a while.

Will you continue with chemo or just think why bother ? I always said if I was diagnosed with terminal then I would come off the chemo and at least not feel bad all the time. Its a hard decision to make I suppose until your hit with it . I just want you to be pain free so you can enjoy your family life. As you have noticed I am up early the last 2 days as the steroids are keeping me awake, I have my red face with them as well so am taking Benydril plus for that. I also have indigestion as well. How are you feeling from side affects ?

Keep smiling Dot & as I have said you are in my thoughts all the time and have been telling my family and friends about you so they all send there best wishes to you and your family.... A very popular lady xxxxx:love:

Love always Eileen. xxxxxxx

Hi Eileen,

sleep evades me too, that is what I loved after the op I was always tired lol...now I am up anywhere from 4am on.

My first reaction was not to have the chemo but my husband and kids broke down and wanted me to try. I will do as they say and have the other two chemo's, I did note that the prof said......... if it has grown.... he didn't say shrunk!! If it has grown I might have a bronchoscopy then handed to the lung team, my mind tells me not to put my family through all that, but I can't trust my reactions at the moment.

It is best that I take one day at a time, there is no way of knowing how this will progress, I have read some horror stories.......... I want quality of life not quantity.

It is nice that you and your friends have me in your thoughts, and the rest of the ladies on here.

I have everything crossed for you Eileen, keep well!!

Love to all Dot xxxxxxx

Well Dot.

My email is biff-o56@hotmail.co.uk so if you want to use that I can send you my Mobile number and we can text or chat. Its up to you anyway as I know your full of all sorts at the moment going through your mind. But in future if your in Hospital its nice to get texts from people as its a long day.

Love Eileen xxxxx!www.cancerchat.org.uk/.../love.gif!

PS that goes for all the ladies' as well xxxx

Hi Ladies

Unlike you lot I haven't got the night owl syndrome! Glad to hear chemo went ahead as planned Eileen, I know you wanted to wait an extra week but now as least your a week ahead and one week nearer being finished. Hopefully you will manage to avoid admission this time.

Dot I'm glad to hear you sounding better, time has a great way of making the unthinkable bearable, even so you sound as if your getting there quickly! I fully understand your comments about quality and not quantity, but be careful when making treatment choices as sometimes these do affect quality. Both chemo and radiotherapy can be used for symptom refief so please don't just discount them on grounds of quantity. Take my case for example - without the chemo I would rapidly end up wheelchair bound with little arm strength, as I don't find chemo symptoms difficult it equals quality for me. This is your first chemo and after a week or two you will be better positioned to judge how it affects you, then after you've had all 3 and the scans you need to be prepared to ask the tough questions (if there needed which I hope there not) of the consultant. Is the proffessor you talk about an oncologist? Sorry but I do get a tad confused! I'm used to everything going through my oncologist and even if (?when) i develop secondaries I woun't be expecting to be referred to a different specialist, it still cancer and he's the expert on cancer so I just don't see what throwing another consultant into the mix can bring - apart from confusion and even more communication difficulties! sorry very negative about multiple consultants but that comes from years of experience!!!!!

I wouldn't put to much store byt the fact he said nothing about it shrinking, prior to this chemo my Onc was very negative - no hope negative- actually dragged me down for a least 2 hours! When I saw him last Fri he was back to his normal self. The only thing that was different was that I'd had chemo and he could see that my movement was better hence the chemo was working. The negativity was purely in case it didn't and this may be the same in your case. At this point they have no way of knowing if its doing anything which is what the scan is all about.

Glad you happy with your wig. I have one from last time but never wore it, while it was comfortable when I had hair I found it very uncomfortable without! I'm afraid I prefer bald but usually give in and wear bandama's when I'm out! Amazing how different you get treated in shops!!!!!!!!

Try and keep your spirits up, good luck to all.

If you think I can help in any other way my e-mail is jacinta.oneill@virgin.net. I am also happy to give my mobile for texts but not overley keen on talking Strange But I hate talking on telephones!!!!

Jackie xxxx

Hi everyone,

Eileen hope you are ok, thought about you all day!!

Jackie the prof is an oncologist, but his work is in the ovarian field, the hospital I go to only treats cancer, the prof said that there is another chemo for lung cancer and he would speak with the team to see how to progress once I have the ctscan. We have two hospitals in my area both of which deal with cancer only, my local hospital has a dedicated cancer wing, but I wasn't allowed to be dealt with by them as they can't deal with certain cancers. They are widely respected, erm well they were to me once lol.

I will just take it day by day and not discount anything until I have fully researched my options. I still have this ache in the right side of my rib cage and back, no wheezes or groans, which keeps my mind zoned in, I try to think it has to be the chemo but of course I think it could be something else. The prof pressed my side and rib cage and more or less dismissed it, sent me for bloods and urine test, all were clear. It feels as though I am wearing my bra too tight lol.

I am taking paracetamol and tramadol, that is what they gave me when I had my op.

Paranoia was never one of my things, but it looks like it visits me regularly now.

Love to all, Dot xxxxxxx

Hi Dot,

Please excuse me trying to diagnose you but I hate you worrying if I can possibly give you some positive info.As you know my secondary is in the lymph glands in neck and chest and I am still fighting fit 2 years on .I get pain on my right side and like you think it has spread but it really does feel as if bra is too tight,even when i havent got a bra on! It has a lot to do with the lymph trying to wash out the baddies and the glands swell .and press on nerves.

Roll on your actual results and you can plan.

Everything crossed for you

Rose xxx

Thank you Rose you are as thoughtful as ever xxx and you are so strong it does help me.

Hope everyone else is well....

Dot xxxx

Hi Dot,

Just read Kentmums post on symptoms diagnosis site.

Will stop nagging you now .Goodnight lovely girl xxxx