hiya everone
my names wayne, i am looking after my wife, ok heres the story too date ill do my best too keep short BUT my heads in my hands with despair, dec 2007, dignosed with 30mm lump in breast lymphs involved chemo untill april, then may had both breasts removed for want of a better word too be on the safe side, july-aug 2008 radio and 5yrs of tamoxifen .march 2009 both breast rebuilt useing tissue from the belly, im sorry not sure of the right terms of words but this is best i can describe, may -june 2010 back pains starts too be honest i thought it was a car accident what happened some years back then the stomach aches and feeling sick i put that down too side affects from tamoxifem after all theres a list as long as your arm, anyway went for blood test and this shows phosphates in the blood so then we went for a full bone scan 2 weeks ago and yep its showed hot spots all over but they said they got it early as far as i can gather and now she is now on femara, NOW the question is this they new it was estogen that was making the cancer grow and it seems too me and there are plenty on the net who has had the ovarys out the main maker of the estogen WHY did they not do this on the first opperation which could have stopped it returning, so now im going too ask for these and the folopen tubes too be removed that way ok you have a early menapause but no estogen and tamoxifen and famara will do a far better job surely?? please can anyone help with this im dessperate, may everyone with this scummy desiese have all the luck in the universe. everyday is one closer too a cure.
Hi Wayne,
Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good support for you and your wife.
While you are waiting for replies from your fellow forum users I have put for you below links to some of BCC’s publications that you and your wife may find helpful. Also, if either of you feel you need to talk to someone in confidence then please do phone the helpline here where the staff are only too happy to talk over your concerns. Calls to the helpline are free, 0808 800 6000 open Mon-Fri 9-5 and Sat 9-2.
Secondary BC in the bone:
Secondary resource pack:
Support:
I hope some of this is helpful to you both. Take care,
Jo, Facilitator
Hi Wayne
I’m sorry that you and your wife have had to find yourself in this position. You have come to the right place here. I was diagnosed with multiple bone mets in April. At first I was devastated (well still am - but am learning to cope with it better!) the help and support on here has been amazing, the best thing has been stories of encouragement and inspiration, lots of regular posters, who will undoubtably reply to you soon, who have lived normal lives with bone secondaries for many years.
With regard to hot spots all over, it is quite common for secondaries to manifest themselves in many areas, in fact most people on here appear to have them in quite a few places. By them saying they’ve caught it early it appears that they’re saying that they haven’t managed to ‘take hold’ and do as much damage. I have an area of my hip that is extensively damaged by bone mets and will have to be removed as a hip replacement. I was led to believe that the smaller areas - hot spots are easier to treat with hormone therapies like Femara.
You also mention concern that the medical profession hadn’t recommended removing the ovaries etc. This is because it is quite a major op in terms of effects on your body psychological and early menopausal symptoms., (it is a simple surgical proceedure however.) Many women who are hormone receptive, respond to the Tamoxifen etc without needing to resort to oophorectomy. Your wife, like those of us on the secondaries forums, has unfortunately been one of the unlucky ones! Having the op could have made no difference at all. I had an oophorectomy (ovaries and fallopian tubes) last June and thought I had done all that I could to keep the b*****d disease from returning. However it returned this April in my hip, spine, ribs, neck, shoulder and a new tumour in my chest.
It has been explained to me that even though the ovaries are the main producer of oestrogen, it can still be produced in small traces in other parts of the body e’g’ fat cells and adrenal glands. I guess if the op was a guarantee of it not returning, it would be recommended that everybody had it!
Anyway, enough of my ramblings, I think that it is great that you are being so supportive of your wife. She might find it beneficial to come on here herself and make some ‘cyber friends’ who are in the same position and understand what she is going through.
Take care and love to you both,
Nicola
Hi Wayne, So sorry that you’ve had to join us on this site, but what a lucky lady your wife is to have such a supportive and caring husband. I have secondaries in my spine and liver and I just want to
reiterate what Nicola has already said. Many women live for many years with bone mets and if I just had the spine mets I wouldn’t be too worried. I’m on a daily tablet for my spine called Bondronat which controls the spread of the disease and my Oncologist doesn’t seem particularly concerned about the hot spots. (I have three)
You will find loads of help and support for both yourself and your wife on this site. The women on here are amazing and I have made some wonderful ‘cyber friends’ - Nicola being one of them. There is a thread called ‘Feeling Low’ which you might like to go on. We mostly all have secondaries on there and chat to each other almost every day.
I do hope your wife is feeling well today, take good care of yourselves. Hope to hear from you soon.
Lots of love, Dianne x x x
hiya ladys
i must be the only lad in the chat room what ever next still theres a first for everything i guess, for now we are just trying too keep our chins up so too speak, and hopefully everything will be ok , just waiting for a call from the doc this morning i know they are busy people but 3 1/2 hours for a 5min chat you got too ask yourself some times what its all about ??? anyway ill keep you all informed of whats going on as yep we are all in the same sodding boat ,anyway i hope you are all well today and heres a big kiss of good luck too each and everyone , chat soon
best wishes wayne each day is one closer too a cure
Hi Wayne,
Sorry you had to join us,but as the other ladies have said,you and your wife will get lots of support her.
I have bone mets in quite a few places and am on a three weekly treatment of a drug called Zometa,so far it seems to be working,and my onc was very pleased at how well I am responding to the treatment, so there is light at the end of the tunnel.
It is so difficult for you both at the moment,and waiting for news,is just awful,and I agree we do hours of waiting for a five minute consultation!! Hope you get your call soon!
I think when there is a treatment plan in place,things will start to look better.
Please keep coming on here, you will finds lots of support,and gain lots of knowledge about various treatments etc.
Take care of yourselves,
Lots of love, Maryxx
Hi Wayne,
Nope, you’re not the only lad. My wife also has secondaries in her bones and as with yours, she received treatment with Tamoxifen amongst other things.
As Mary has already said, Zometa does wonders for strengthening the bones and Vicky has been receiving it for about 4 years now. I know pretty much how you feel and everyone here knows it’s no fun 
Keep smiling though, it’ll make the Doctor paranoid 
All the best,
Stuart
Hi wayne,
Another lady with bone and liver mets here. Same with Dianne, not too worried about bone but worried sick about the liver.
I’m on 3 weekly Zometa, too, same as Mary and it’s been working wonders for me. I have 6 hot spots in total and some of them have showed signs of healing since the start of Zometa.
I think the scary bit is the label “secondary”. However, as it has been said before, lots of the ladies live with bone mets for many years.
My BC is estogen fed, too. Had Tamoxifen for nearly 4 months and it didn’t work for me at all. My onc doesn’t like oophorectomy due to my age (25), so will be given Zoladex to switch off the ovary and some tables to deal with the estogen produced by fat, etc…
Waiting for a phone call is so annoying. I find that I have to spend lots of time chasing after things myself. Hope you’ve got some reply by now. Your wife is very lucky to have you as her husband.
Take care
Hi Wayne
Another bone mets woman here. I was diagnosed last year and have been on Zometa for 9 months. It is usually given in an infusion 3 or 4 weekly and has amazing results strengthening bones and is also though to prevent cancer attacking them. I know it is devestating news for you both, my husband and I can totally understand, but things get easier when treatment plan in place and it is good that it was found early. In my case like Nicola a lot of damage was before it was diagnosed, mine to my upper verterbrae which causes a lot of pain which thankfully is under contol now. Just want to wish you all the best. I am lucky to have a wonderful, supportive husband and I am so glad that your wife has you. Going through it together and sharing makes it much more managable. When you feel like a moan or want to ask any questions just shout. This site is full of very knowledgable woman who are more than happy to share their experience and offer support.
Lots of love Anne x
hiya anne hi diane and hiya too all
god dont i feel like SHOUTING AND SCREAMING and im a lad, you feel like your hands are tied, my lovley lady she seems so tired all the time but i guess it may be the tamoxifen and the femara after all i said before they got more side affects than you care too mention soo fingers crossed on that one, im so glad you all have so called battle plans and it all looks good ,we need too go back too the docs next week too get ours i hope then we too will be on the long journey the same as the rest of you, so tonight i raised a glass too good health and good luck too us all, i posted earlyer a message and hoping the post what i put will be in the forum so hopefully you all can have a read of what i found and get the boost we need god knows we need it ( just hope it dont sell out before i can grab some LOL ) chat too all you ladys soon and i will sure let you all know what happens when we been too the docs, by the way im really glad we found you all, best wishes too each and everyone.
wayne eachday pass is a day closer too a cure
hiya ladys
sorry too be a pain keep asking questions, but i really need too know if any of you feel really tired most of the time? if you are probaley a daft question is it the tamoxifen ? just seems too be a on going thing and i know everyone gets down and tired now and then but this is on going, just wondered if any of you had any thoughts on this, thankyou all for your time and best wishes,
regards wayne everyday passsed is one closer too a cure
Hi Wayne, (And all my mates) So sorry you’re having to wait for phone calls etc. We all know how nerve racking and frustrating that is. Waiting for results and getting appointments in place is one of the worst things about this. However, once you have a proper treatment plan in place, it does become a bit easier to cope with.
Hang in there and take good care of yourself and your lovely lady, we’re all behind you.
Lotsa love, Dianne x x x
Hi all,
I’ve had bone mets since diagnosis in July 07 and still feel a bit of a newbie compared to a few ladies on here who have lived with them for years and years.
I was 100% positive for oestrogen and progesterone but was never offered an oophrectomy although when I mentioned it, it was in conjunction with the major hot flush side effects of the hormone therapy. I’m on monthly zoladex jabs to suppress my ovaries so I can have arimidex. As far as my bones are concerned, I have monthly zometa infusions and take Adcal d3 calcium/vit d tablets. So far everything appears stable - in fact I have just come back from a trip to Amsterdam and Paris and am looking at planning another jaunt…!!!
Life is different for me as I ended up retiring from work aged 44 so I’ve had to adjust but I’m loving it.
Any questions, feel free to ask, check my profile for other info and have a look at the thread entitled ‘bone mets’ (or something like that - memory still rubbish after chemo and drugs…good excuse!!)
Liz
hiya ladys
ok now have an up date so too speak! well its really aquestion too be honest as i am now a little concerned not knowing what too think now? ok has anybody ever suffered with a numb patch on the bottom right hand side of the chin and lower lip? is this too do with all the crap whats going on or is this coinsedence? just too say there has beeen no trips too the dentists in recent months please help if you can . thankyou all for your time and support hugs and wishes too all.
wayne everyday passed is one closer too a cure
Hi Wayne, I’ve had a feeling of numbness and also tingling in my cheek at times. I mentioned it to the ONC months ago, but he just told me to tell him if it became continuous. A couple of weeks ago I suddenly developed a lump at the side of my cheekbone near the hairline. To say I was scared is putting it mildly! It was at the weekend too, so I couldn’t get any help (it’s always the bloody weekend when things happen) Anyway, I went to the GP on the Monday (my onc was on holiday!!!) and he said it was nothing to worry about, just a se from the tablets I’m on. I then went and had an x-ray and the technician was wonderful. (I wanted to keep him) He said he couldn’t tell me anything, but then asked me to sit in the waiting area for a minute and when he came out he walked towards me and said he had everything he needed. But as he did so, he put his thumb up in front of him. (I could have kissed his face off, in fact I think I did)
Anyway, don’t worry too much about this, just mention it to the ONC when you next see him/her. It’s all part of the fun process we are going through!!!
Hope you and your wife are feeling ok today. What is her name?
Take good care of yourselves, lots of love, Dianne x x x
hiya diane and all the rest of you lovley ladys
well diane, my special and lovely lady is maryanne, and if im honest we all have a bicker and a cross word now and then, BUT this brings everything home, money means nothing not that i have any so maryanne cant be with me for that lol, must be my george cloney / brad pit looks ha ha ha , oh well i wish, anyway i had too put the post up regarding numb chin reason being STUPID as i am probaly why i drive a skip lorry all day i googled it and when it came up ill be honest i fell through the floor then had a sodding heart attack and im still worried sick too my stomach now if im completly honest!!! also of too the GP tonight too get chest x-ray results as she has had a nagging cough now and then for the last few weeks if i said i was not worried about the chin and the x-rays i would be lieing too all of you and im not that sort of person, anyway when we get the results ill let you all know please just let me have 1 break im not asking much am i ? love too you all.
wayne everyday passis one closer too a cure
Hi Wayne
It’s great that you are on here and getting some support for you and your wife. I was diagnosed with secondaries in bones and liver in January. It’s a massive shock at first and it will take some time for you both to take everything in. I slumped into a real black hole at the beginning but now I’m feeling much more positive and, as much as I can, am getting on with my life even though my prognosis is not at all good. There is also a thread on here for families and partners which you may also find useful for yourself. Once my treatment plan was in place I found it a bit easier to cope. I don’t know where you live but keep your eyes open on the homepage of this site as BCC run support courses for women with secondaries. I went along this year and found it really helpful - particularly to meet other women with the same problems. I hope you feel that you or your wife can come on here and ask any type of question you like - big or small - us ladies on this forum have a wealth of experience and there is always someone willing to help. After a while you will both settle into a new ‘normality’. This point may seem far away at the moment but it comes to us all - with the odd wobbly moment. Practical things you could do for Maryanne would be to see what services are offered at your hospital. I have free counselling and the occasional complementary treatment such as reiki etc. Your wife should also be able to apply for Disabilty Living Allowance which is normally fast tracked for people with secondaries. The Macmillan advice person at your hospital should be able to help you fill in the forms and give you any other advice. I’m sure I’m bombarding you with information but sometimes these more practical things bring a focus to the situation away from scans, doctors and treatments. We all worry about what the future will bring but sometimes concentrating on the here and now helps the situation seem a little less scary.
All the very best to you both.
Alison x
Hi Wayne, Didn’t post on here yesterday as I couldn’t get on line. Bloody computers! Just wondering how you and Maryanne got on with the chest x-ray results etc?? I know what you mean about ‘wanting a break’ - the times I have sat here and said ‘Why me again?’ I’m in exactly the same position as Alison. Secondaries to spine and liver diagnosed in January after 18 years of good health.
Alisons advice to apply for DLA is absolutely correct. Maryanne will be entitled to the top rate of £121 per week if she has secondaries. Ring the Macmillans up and ask them to put you in touch with their local benefits advisor. Mine was wonderful. She came to the house and all I had to do was give her my national insurance number and sign the forms. She did the rest and I got the money within 2 weeks. Maryanne will also be eligible for a disabled drivers parking permit which you can use on any car as long as she is in it. Also, she will get a free tax disc. They send you the form when you get the DLA and you just take it to the Post Office and they hand the tax disc over (Magic!).
I do hope that the results are good for you both, please let us know asap. We’re thinking of you and will always be here to give you love and support.
Loads of love, Dianne x x x
hi diane
your right 100% bloody computers just when you need them they go wrong !!! oh well worse things happen i guess, ok got too the docs now i dont know about you BUT you just know when she is about too drop another sodding bomb or is it just me thinking like this after all nothing seems too have gone too well at the minute!!! anyway since the last blood test 2 weeks ago phospahates has gone too the sky, which the doc said they were expecting, also there is fluid on the bottom righthand lung and its the right ribs where its matatais is, now she dont know if it is a virous or cancer she said she is hoping a virous but she is very suspicious of cancer, we have a CT scan tuesday which will tell us one way or the other as its a full abdonable one so anything nastie the doc said it will show if it is then its round 2 of chemo god if i could do it for her i would what a complete s**t WHY WHY WHY have you ever asked your self ? i asked how long the chemo was she did not know ,the last lot was four months ,but she said the good thing is the 2 are linked its not a new cancer so they know what they are dealing with i just hope and pray they can kill the scummy desiese and be normal what ever that is ? some more good news the brain scan which i never even knew they done is clear so thats something now just dreading the results of the ct next week anyway enough about our troubles i hope you and all you other lovley ladys are haveing a nice day . love too you all and the best of wishes
wayne everyday passed is one closer too a cure
Hi Wayne,
So very sorry to hear that Maryanne has to have another scan, and you are right we can always tell when another bomb shell is going to be dropped, I think we are all mega sensitive to the signs!!This bloody disease is such a roller coaster,emotions are so raw for both of you just now,but there was some good news about the brain scan being clear,so lets hope and pray that maybe there is a virus,and they can sort it out It is so good that you are there supporting her,she needs a lot of TLC at the moment,and she is getting it from you, but you need support as well, so come on here at any time, we are all here for you,and understand what you are both going through, I will be thinking of you both on Tuesday.
Take care, hope you maage to have a peacful weekend,
Love Maryxxx