Just been diagnosed

Hi all,

I have just been diagnosed with secondary breast cancer in the lung (May 2008). I had fluid in the my left lung which was drained and I had a plueradesis. A biopsy should have been done but was not because the surgeon was “surprised by the amount of cancer found”. I have had my medication changed to exemestane from Arimedix and have not been given the option of chemo. I had problems with chemo the last time but have been told by my breast care nurse that there is tablet form chemo but my onc has suggested against it.

My concern is the cancer is too far gone and no one is telling me. I have been told take the tablets and then in three months they will do a CT scan but I think isnt there anything more they can do? like cut the cancer away or something?

Am I being stupid.

I am scared if honest.

Hello Marcie,
What a terrible shock for you, I am so sorry to hear this. You must be reeling. How long ago did you have your primary diagnosis?
I don’t have any experience to offer (I was diagnosed last year with primary bc and liver secondaries. Had surgery, chemo, and now on herceptin and tamoxifen and doing very well.) but thought I’d reply while you wait for others. I am sure others will come on soon who have experience of exemestane (aromasin) or lung mets.
I just googled exemestane and got the cancerbackup site. It says it’s a hormonal treatment and can be used in secondaries where other hormone treatments have failed to control the cancer. Sounds like that might be why they are trying this now, but if you are unsure you can contact your medical team and ask for more information. It is really important that you understand why you are having a particular treatment, so you can put your trust in it and have peace of mind.
If they are suggesting a scan in three months then that is a good sign! If they were really worried about you they wouldn’t wait that long. It must be that they are expecting the exemestane to make a dfference, but it can’t be seen until you’ve had a few months of treatment. It takes a while for these drugs to do their stuff.
I know all of us liver secondary ladies find it really difficult to understand at first why they won’t cut it out. It seems the logical thing to do! I think they can control things so much better these days with the drugs available, that it’s better to try them than go in all gung ho with a scalpel. It also means that if there are other ‘seeds’ of cancer elsewhere, they will be getting the treatment too.
I really hope you get some answers from others who have ‘been there’ very soon. In the meantime, take care of yourself, and lean on good friends and family. It is perfectly okay to be scared - who wouldn’t be. And you’re not being stupid at all. It is really hard to get your head round stuff when you are in a state of shock. Even if they did explain it all, they shouldn’t mind going through it again to answer your questions.
Have you tried doing a search (top of page) and seeing if others have posted about these issues?
Sending you a big hug
love Jacquie

Hi MarcieM

You may find the BCC publication on secondary breast cancer in the lung helpful to read. It can be found at :- breastcancercare.org.uk//docs/secondary_breast_cancer_in_the_lung_0.pdf

Also if you would like to talk through your fears and concerns please give our helpline a call. Here you can talk witha trained member of staff who can offer you a listening ear as well as support and advice if needed. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

I hope this helps

Kind regards
Sam

Dear All,

Thank you for your replies. I greatly appreciate them.

I should have also said I was first diagnosed with BC in July 2005. I had a WLE and Axillary clearance in August 2005. I had an infection in the breast wound so my chemo was delayed until Oct 2006. I then had complication with the chemo which sent me into a diabetic coma, even though I was not diabetic. I was in ITU for a week and in hospital for about three weeks (Feb-Mar 2006). Went back to work in May 2006 and since my coma had this breathing problem that no one could tell me what was causing it, so for almost two years my breathing was difficult and causing me a lot of problems. I was referred to the chest clinic and was told everything was ok i.e lungs were ok. I did one x-ray whilst at the chest clinic and a lung function test, but it was not ok, as I now know in May 2008 that the cancer had spread to my lung.

I am upset, hurt, angry and all these emotions because I kept saying something was wrong and I was being told nothing was wrong. I had to collapse at work on 17th April before people believed that someone was wrong and now told I have secondary cancer.

I really can’t explain how I really feel as there is so much emotions going on.

I have lost all confidence, I have not been back to work since April. Everything I do now is an effort and when I do things I am in bed because I am exhausted. I don’t know what type of life I am going to have now as I was so independent and feel useless now.

I have to get back to work and I am afraid I won’t be able to cope as I get exhausted so quickly now. My job is full time and I doubt if my firm will make it part time and if honest I dont think I would want it. I want to go back to the way I am but I don’t think that will happen.

If you have cancer you are covered by legislation for employers. They have to make “reasonable adjustments” to your job so you can work if you can’t do the job as you used to without some support.

They’ve agreed quite a few things for me where I work. If you can’t go back to work, or even if you can, many women with secondary breast cancer claim benefits under special rules that allow a fast track claim if you could in theory die within 6 months. Jane Tomlinson got this benefit after her secondary breast cancer diagnosis. You need a statement from the hospital. I can’t remember how much it is but it’s better than nothing I should imagine. Also you may well be entitled to a pension if you leave work through ill health

Mole

Hello Marcie
I would just like to say that I am sorry that you have secondaries. I have secondaries in my lung like you I had my left lung drained and a pleuradesis a year ago and I am now on zoladex injections and Armidex. I now have fluid in my right lung which I am waiting to have it drained.

I was really shocked when I found out about this because I didn’t have a primary dx just secondaries but after having the FEC I am coping with it quite well.
I am sure that when you have got over the initial shock you will come to terms with it and be able to lead a reasonably normal life. If there is a normal now.

Good luckCaroline

Hi MarcieM,

Your story is unbelievable - no wonder you are woried about what the doctors are telling you.

When you have been telling everyone that somethig isn’t right and they don’t believe you then it takes time to build a trust again.

I think you have done the right thing by expressing your worries on here - that way you can check what you are being told with other people’s experiences.

Try not to think the worst - difficult I know …

Also, once your treatment starts to kick-in then your breathing should improve and you will be able to do more. I think you’ve just got to try and stick with it and give it a chance.

Wishing you the best of luck and hope you get a lot of help on here.
Love FizBix xxx

HI Marcie

I read your story and I really sympathise here as I have secondaries myself and I know what an awful awful shock it is.

Why are the saying no chemo - maybe you had a reaction to first chemo ? I think you really need to get some full and honest answers from your medical team. Do you have someone you could take with you to your onc appointment who could take your list of questions? I know how difficult it is to remember what you wanted to ask when you are sitting across the desk and under stress.

Dont worry too much about work at moment - i know its easy for me to say, but your firm can’t legally fire you or do anything to you at the moment. Just tell them you are too ill at the moment and you can get in touch in 10 days or so…

I really hope you get some straight answers and you can feel some confidence in your treatments
love
Cathy

Hi Marcie
sorry to hear you have secondaries it such a shock and I dont think any of us could think straight for a good few weeks. You will get lots of help and handy tips from this sight I know I did. When you go to your onc take a little note book ask questions and write the answers down.
My onc used to roll his eyes round but he is used to me now. I am on my 2nd book and in 2004 I was only given 6 months to live. Ask about all the different chemos its your body and you need to take control we all respond in different ways have a word with your BCN if you dont have one insist they put you in tough with one. They help sorting out benefits and will put your mind at rest about all sorts of things.
Good luck and I hope they sort out a treatment plan for you as soon as possible. We are all here to help each other out so keep in touch.

Love Debsxxx

Hi
iI had a pleural effusion drained and pleuodsis done in March. My secondaries were diagnosed nearly 2 years ago and I had been on exemestane at that time. I have had chemo and am currently on Xeloda which is a tablet form . It seems that although my cancer is hormone positive the hormone drugs don’t seem to hold the cancer.From reading these boards it is a very indivdual thing . I have CT scans every 3 months and blood tests to check the tumour markers.
Best wishes Kathryn

I would like to thank you all for your kind words. Reading KatieP I see you were given the option of chemo. I was not. I spoke to BCN and was told that there are different options for chemo one being tablet form. When I brought this to my onc’s attention, he said it might do more harm then good. What does that mean? Yes I had a problem with previous chemo (CMF) but I would have thought onc would tell me there are different types of chemo or that I am not a good candidate for chemo or the tumour is too big for chemo right now, but I am not getting that at all.

Trust me I know what to ask but I get no straight answers then I get letters sent to my GP saying different things from what I have been told. When I was first in hospital in April not knowing that the cancer was back. I had a CT Scan and my onc told me it was only two small tumours. He never said it was anything more than that.

Now that I have had the pluerodesis he is now saying he was not “surprised” by what was found. I was because I was never told before I had my operation that there would be more cancer found and I was not told before the operation that the fluid was caused by the cancer.

I don’t get it why is no one being straight with me even though I am straight with them and ask the right questions?

My BCN is my saving angel. I always feel better after speaking with her but it is not her job to do that it is the onc team. She helps me find out information which I should be given by my onc team but I am not. I come out of seeing my onc feeling why did I sit forever waiting to see him and then still not know what is going on. I met my onc nurse once when I was in hospital in April and I have not seen or heard from her again.

I could not believe after my surgery no one came to see me I had to beg a nurse to find someone to speak to me AFTER my surgery. I would expect someone would speak to me and tell me how the surgery went but no I had to be asking the questions and I felt if I had not beggged a nurse to find a surgeon I would not have been spoken to.

I had my operation on Wednesday morning in 28th May and when the surgeon spoke with me he said the drain could come out and I could go home the next day. I could not believe that as I was in extreme pain and he was going to send me home. I told the nurses I was not ready to go and when I decided I was ready on Saturday to go home Sunday they found I had a infection and suggested I stayed until Monday. What if I had gone home on Friday, I shudder to think

Yes in the past I have made complaints because that is the only way I have got things done, but if things were done properly I would not have to complain. Does that mean I should be treated differently from the other patients because I complain about my treatment? It feels that way.

I must say it is only Oncology and my last operation I have a big problem with, my other care I have no problem with.

I feel angry, upset, alone, frustrated and all these emotions because I feel no one is telling me straight what is going on with my body etc., and no one is listening to me about what I feel and know about my body.

I sometimes feel so low and just crying myself to sleep or just watch TV but not watch if you know what I mean.

Once again thanks for your kind words.

Marcie.

I would like to thank you all for your kind words. Reading KatieP I see you were given the option of chemo. I was not. I spoke to BCN and was told that there are different options for chemo one being tablet form. When I brought this to my onc’s attention, he said it might do more harm then good. What does that mean? Yes I had a problem with previous chemo (CMF) but I would have thought onc would tell me there are different types of chemo or that I am not a good candidate for chemo or the tumour is too big for chemo right now, but I am not getting that at all.

Trust me I know what to ask but I get no straight answers then I get letters sent to my GP saying different things from what I have been told. When I was first in hospital in April not knowing that the cancer was back. I had a CT Scan and my onc told me it was only two small tumours. He never said it was anything more than that.

Now that I have had the pluerodesis he is now saying he was not “surprised” by what was found. I was because I was never told before I had my operation that there would be more cancer found and I was not told before the operation that the fluid was caused by the cancer.

I don’t get it why is no one being straight with me even though I am straight with them and ask the right questions?

My BCN is my saving angel. I always feel better after speaking with her but it is not her job to do that it is the onc team. She helps me find out information which I should be given by my onc team but I am not. I come out of seeing my onc feeling why did I sit forever waiting to see him and then still not know what is going on. I met my onc nurse once when I was in hospital in April and I have not seen or heard from her again.

I could not believe after my surgery no one came to see me I had to beg a nurse to find someone to speak to me AFTER my surgery. I would expect someone would speak to me and tell me how the surgery went but no I had to be asking the questions and I felt if I had not beggged a nurse to find a surgeon I would not have been spoken to.

I had my operation on Wednesday morning in 28th May and when the surgeon spoke with me he said the drain could come out and I could go home the next day. I could not believe that as I was in extreme pain and he was going to send me home. I told the nurses I was not ready to go and when I decided I was ready on Saturday to go home Sunday they found I had a infection and suggested I stayed until Monday. What if I had gone home on Friday, I shudder to think

Yes in the past I have made complaints because that is the only way I have got things done, but if things were done properly I would not have to complain. Does that mean I should be treated differently from the other patients because I complain about my treatment? It feels that way.

I must say it is only Oncology and my last operation I have a big problem with, my other care I have no problem with.

I feel angry, upset, alone, frustrated and all these emotions because I feel no one is telling me straight what is going on with my body etc., and no one is listening to me about what I feel and know about my body.

I sometimes feel so low and just crying myself to sleep or just watch TV but not watch if you know what I mean.

Once again thanks for your kind words.

Marcie.

Hi all,

I had a good day on Thursday. I went to my office and had a long chat with my boss and HR and we have worked out something really good. To be honest I went in not knowing what to expect and came out very happy and calm. I go back to work next Friday and then for the rest of the month 4 days a week. It will then be reviewed. They have calmed my fears. Not knowing, you assume and presume and I always get it wrong when I do that.

I can’t believe I am actually looking forward to getting back to work.

I saw my Mcmillian nurse yesterday (Friday) and we had a good chat also. All round it was good.

I still have one problem. I am not going out socialising. I know it sounds weird but I can potter about indoors I can travel up to the office and have lunch with friends and do the shoppint etc, but I just can’t seem to go out. I have been invited out and turned it down. I supposed to go and visit family in Birmingham but just can’t face the journey.

Is this normal? I am normally out and about but I feel like I am hiding in my flat at the moment. I know I get breathless easily and I am concerned people will be fussing around me and I dont want that. I know I sound strange but that is how I feel at the minute. I hope it changes soon.

Marcie.

Hi Marcie,

Am so glad that some things are going well - it sounds like your HR & boss are being completely understanding, and that you have a good Macmillan nurse. All these little things are so important in how we cope. I wonder if it is possible for you to ask if your bcn can be present with you next time you see the oncologist and that she understands your fears and concerns about the way you are being treated?

I do understand what you are saying about not wanting ot socialise and it sounds very normal to me. You seem to lead a busy life with working and you are happy lunching with friends. So it seems natural that you want some ‘me’ time when you don’t feel you have to make an effort. I think we are entitled to say no when we don’t want to do some things. I find I am most comfortable when I am in my home situation doing as little or as much as I choose to do, without any pressure. Hope you can give your onc a good talking to!!!

dawnhc
xxx

Hi Marcie

Sorry to hear about your dx and all the cr*p that seems to be surrounding it. I was dx with bone mets in May and know exactly how you’re feeling about not socialising much. I’m happy to go to work when I’m feeling OK during my chemo and it gives a great sense of normality. They have all been very good to me and I can still have a good laugh there. I meet friends on an ad hoc basis, nothing big, just a drink down the pub or a coffee every now and then. `I had to have a big think about a family ‘do’ earlier this month in Bolton but in the end I did what I wanted to do and stayed at home! I couldn’t face the journey, wearing a wig all weekend, suffering the 'how are you’s and the late night and I felt much better for it. We sent my youngest daughter as the family representative! I also don’t feel like dressing up or making a big effort to go shopping to get something to dress up in, so anything for an easy life right now. I also appreciate the simpler things in life - like my hubby! Well, going for a nice walk or having him take half a day off so we can just potter on our own. I’m sure once you know what’s happening with you treatment you will decide how much you want and can do. I found it very difficult to do anything other than everyday stuff until I knew what my plan was so hopefully you will feel like this too. Definitely go armed with as many questions, and maybe you BCN as suggested, when you see your onc. If something’s not clear or obvious maybe you’ll have to get him to explain the full reasons, after all it’s your treatment you’re talking about here.

I hope all goes well at you meeting and good luck with your treatment, keep us posted and Take Care.

Nicky xx

Thank you for your kind comments. Unfortunately my BCN works in a clinic on the same day. It is strange but they seem to have clinics on the same day, Thursday.

I did go to Birmingham on Saturday after saying no then yes. To be honest I did enjoy myself but my Wednesday I had to come home because I felt tired and did not want to stay in bed all day at my cousin’s.

I have my appointment today and then work tomorrow.

I have been feeling “strange” like aching all over and going hot and cold. My temp is 37.1 right now and yesterday I had welts across my chest which were sensitive to the touch. Don’t know where they came from.

Anyway I am trying to stay positive.

Thank you for your kind support because sometimes I think I am the only one doing the stuff that I do so it is nice to know I am not.

I will keep in touch

Marcie.