a whole new world

hi
recently diagnosed with local recurrence after a 12 year disease free period, I now find that the cancer has mutated from grade 1 in 1997 to grade 3 now. I am in new territory and looking at chemo, rads, possible oophorectomy if chemo doesn’t put me into menopause and the hormone treatment.
have viewed lots of lovely, positive threads so hopeful someone out there can offer advice etc about dealing with this little lot…

hi there well I know how you feel I had 18years and then had a local reccurence, hit me like a bolt out of the blue, I had mastectomy and chemo couldent have rads as had them the first time. Its difficult to know what tosay it takes a lot to get your head around I am now on arimidex mine was a grade 3 on core biopsy but they downgraded it after the operation. Where are you now on the treatment side have you had the op or are you waiting, I have since spoken to many ladies who havd coped well with a recurrence and even gone on to have reconstructions, remember you have done this once you can do it again, and in a few weeks when you have your treatment plan in place it will give you something to focus on, best wishes love suzan x

Hi suzanne
thanks for your support - I have had lumpectomy - was diagnosed 6 weeks ago and had surgery at the beginning of July, but waited for results as consultant was on leave and we have known each other a long time - have a strong trust relationship, so I wanted to wait til he got back to work to discuss results. only got to know a couple of days ago. Its the grade 3 thing that has thrown me…why was that such a shock? I thought I had been realistic but clearly not!
have a treatment plan of chemo, then rads , poss oophorectomy and then hormone treatment. Although its 12 years since first diagnosis I am still just 50 and nowhere near menopause, as far as I can tell. Last time I had mastectomy plus tamoxifen and that was it. last cancer was very straightforward to treat, despite only being 38; this one is a little devil - awkward place, more aggressive - its has just thrown me!
I have gone from someone who once had bc to someone who gets bc, and its more like an ongoing thing - does that make sense? sorry feel guilty about being maudlin but need to be honest…

hi daisyleaf you were the same age as me the first time around ,mine was just lumpectomy rads and tamoxifen, I was still premenopausal last year at the age of 58 when it came back. I know how you feel I felt that I had finally put it behind me it was a huge shock after all that time. Isthis in the other breast sorry to ask but wasnt sure as you had said you had a mastectomy.When they said mine was a grade 3 I couldent believe it, but they did say the single most important thing was the length of time between recurrences and as we all should know each of us is an individual and no two cancers act the same. I hated chemo but as they say it was doable just getting my hair back now.I feel like I have lived so long with this wretched disease but what else can we do but go through the treatment, you are still young and I know how I felt at the age of 38 with small children to go through it, and now once again seems so unfair. And no you are not being maudlin, just honest. I too have felt pretty low at times, if you want to private message me anytime feel free to do so, best wishes love suzan x

Hi,
I haven’t posted on here for a while as i’m never sure how to express myself properly, but i always follow the post of everyone else.
I first had cancer at age of 30yrs, had a lumpectomy, chemo and rads. Then second dx at 46yrs had recon dec 07 followed by chemo.
In March i had a mastoplexy (uplift) to my other good breast and the wound would not heal it was horrible and became badly infected, infact it is still not healed properly., After about 12wks i discovered what i thought was a lump in my armpit of good breast and immediately went to hospital and it was discovered to be a swoolen lymph node they took 2 biopses and told me over a wk ago my cancer was back, so i am now having further tests as they can’t be sure that it has crossed over or came from another part of my body (secondries). I have triple-neg so they have said things are complicated and i am worried out of my mind about it, in fact this is the first time i have really spoke about it as i have been really upset, but i know that you have just got to get on with it. I had a bone scan last wk and i am having a body scan on tues with a mammogram on wed as they need to see what is going on in good breast, i will have to dope myself up as you all know a mammogram is uncomfortable and i have an open wound and a very sore breast at the moment so i’m not looking forward to that, then i will get the results the following wk and they will be able to tell me what they plan to do. So it just goes to show you never can tell when it will come back, i had 16 good yrs the first time, and only 18mths the second time, my tumour was also grade 3, stage 3 and it is hard to take in, sometimes i think this cannot be happening to me again, but it is and i know i will just have to deal with it.
Thank for listning
Reneexx

hi renee, well we can now keep each other company.How awful, I had to have a bone scan and ct scan and I can remember how worrying it all was, its like a bad dream.Try and focus on one thing at a time until you get the scan results you will not be able to think properly or plan ahead, as soon as you know the results you will have a treatment plan in place and something to focus on, but the only thing I can say is that treatments are very different nowadays than they were when I was first diagnosed in 1990.Ple us know when you have any results and the outcome of the tests , meanwhile please keep posting as we can all support each other, take care love suzan x

hello again
Suzan, thanks for really helpful comments - it is daunting but doable and you are right, we have to just get on with it.
this new cancer’s a recurrence in the same breast, underneath the reconstruction, thats why its in such an awkward place. My kids are up now (23 and 21) but still at home, better than last time when they were 9 and 11, thats a hard one isn’t it?
Renee, I’m so sorry to hear everything thats happening to you - waiting for those scan results is hideous isn’t it? I hope talking through this can be some help to you and at least allow you to say things that are hard to talk through at home sometimes.
sometimes life feels unfair and you just have to get through things a bit at a time when they seem overwhelming, as you were saying suzan, I think thats a really good approach. I’m thinking of you and hope the results are OK, please let us know.
take care, chaps
Monica

hi there,
going for my body scan tomorrow, and i don’t really know how i feel about it all, it seems as though it is happening to someone else.
When my cancer came back the second time, because it was so long, 16yrs, they said they would treat it as a new primary, but i felt all along i would be unlucky and it would come back again quickly, i know what you mean the waiting for scans and the results are murder.
Sometimes i think i’m quite strong but it is all on the outside inside i am crumbling but trying hard to keep a stiff upper lip. i now have to take mst and other quick acting morphine drugs to combat the pain i have been having in my lower back and hip, and they have told me to make sure i top up my dosage for my mammogram on wednesday as i have quite a sore breast which has not healed yet.
I’m the same where my kids are concerned they were 8 and 6 first time round now they are 26 and 24, so i know how grateful i am to have made it through to their adulthood. I now have a 2 and a 1/2 yr old granddaughter and they all still live at home, so i don’t get much time to myself. Hope everything goes well for you all and thanks for replying to my post, mabe if i posted more i would get better at expressing myself better, i wouldn’t want you all to think i was all gloom and doom, i just feel down at the moment, but i do get on with it the same as everyone else, at least on here you know you are not alone. They said if the mammogram no good they would do a mri, i just wish it was over and i knew where i stood, even though i am terrified. I think it is better to know.
lots of love and good wishes
reneexx

Hi Renee
I think being able to talk honestly about it is so important and the best thing about these discussions. If you can’t tell us when you are feeling down, whats the point? its being able to do this that helps me to be cheerful for people who can’t cope with how things really are!
I hope tomorrow goes well - I’ll be thinking of you xx It is good to have got the kids up, isn’t it - I remember praying for 5 years to get the kids into their teens, so I guess it could be worse!
take care
love, Monica

hi renee and monica, mine three were 3,5 and 9 the first time around, I remember I sold my soul to the devil for as many years as I needed to watch them grow up, and even now they are grown I still worry about them and now I want grandchildren.SOmetimes I dont know what to say I try to be positive but admit I feel frightened and alone and yes it is better to be honest about our feelings what use is there in trying to hide them. Renee will be thinking of you tomorrow and wait for news from you, please continue to post we are all in the same boat and need each other, monica at least if its in the reconstructed breast they should be able to do something about it, and I know what you mean about having the same surgeon, my oncologist was the same as last time and I trust him completely. Well until tomorrow girls god bless and take care love suzan x

hi,
went for scan today, it was murder, had to drink a litre of water with medicine in it , it took me an hour to drink.
Then when i got to the hospital had to ask for a toilet that was a bit more private as it ran through me, sorry to tell you that but i was so embarrassed,the scan was over fairly quickly then had to stay in hospital for an hour incase of reaction. Next step is mammogram tomorrow then results either nxt wk or wk after that as consultant is on holiday. I was so tired when i got home i had to sleep for a couple of hours. I know what u mean by selling your soul to the devil that is the same way i felt and still do, although my kids are now grown you still feel you need to be there to protect them don’t you, i think you always feel that way about your kids. i have the same consultant as well, have known them for 18yrs, and feel i trust them. Hope you are both well.
Love Reneexx

hi renee, so sorry your scan was so lousy,it must of been awful running around looking for a loo. I suppose its the wait now till you get the results.mammogram tomorrow hope its not too painful for you , dose yourself up before you go… I know what you mean about being tired after at least you were able to have a sleep. Yes we do feel the need to protect our children no matter how old they are, I had three at home until last weekend and my eldest boy of 25 moved out, only two left and house seems so quiet, funny thing was he wasnt the noisy one, felt really low for a few days cos he was gone. But you have grandchildren as well at home so that must keep you busy. How long do you think it will be before you get the results, I was so glad I still had the same oncologist as before, asd you ssay you build up the trust between you. I think after such a long time it takes a while to get your head around it all. Anyway let us know how it goes tomorrow, take care loce suzan x

hello guys
sorry your scan was so awful Renee - its not the scan bit is it, it’s all that juice stuff sloshing about. The pain in your back must be so scary too, and that’s also so tiring, being in pain and anxious about it.
I’m thinking of you today for your mammogram, hope it goes OK and its not too painful.
Do you have nice stuff to do between today and getting the results? I am thinking of you - keep in touch about how things are going and how you are feeling.
I have my first ever Oncology appointment on Aug 10th to plan next phase of treatment so that will be interesting…
Also had a response to my complaint - I went to the local hosp first with my lump - they examined me and my lump, decided to mammogram the reconstructed breast (a bit pointless) so then did the other one, then wrote and told me I was free of any suspicious symptoms and was discharged. I had gone to the better hospital 2 days after that and been diagnosed so I complained to the local hosp telling them that it was actually a stage 3 cancer and making an official complaint. Its really scary - if I hadn’t had the other place to go to and been one of those people who has to know as much as I can, I might have happily accepted their diagnosis. Luckily I am mad for finding out as much as I can about it all - drive my husband mad reading out info he doesn’t want to know! So anyway, I want the local hosp to be more careful so I complained - will be interesting to see what happens. I am not usually the type who does that- I must be changing.
take care both of you - thinking of you, love, monica

hi monica and suzan,

went for my mammogram today was quite sore but not as bad as i expected, they took quite a few pictures and seemed to be interestd in my chest wall, so i was a bit worried about that. i think no matter what happens when you have had bc you worry about every little thing, i feel the same as most people on here i can’t remember what it was like before bc.
i also know 2 women who was misdiagnosed, that must be really awful, just goes to show it pays to follow your intincts, the younger woman was only 38yrs and was misdiagnosed for 10mnths and the other woman was misdiagnosed for about 4mnths, it was her 2nd time and she had been feeling unwell and tired just after her chemo had finished and she felt it was something to do with her recon breast, but as usual they said no, but turned out the woman was right all along and had to have her recon re-done as the cancer had returned. i just feel i am in limbo just now waiting to here if it has spread and what they are going to do, i just can believe i am going ahead again for the 3rd time.
my mother-in-law’s neighbour who i like to think of as a friend died on sunday night of bc, she was terminal but had been given chemo but it was too much for her, and she took an infection. she had been fighting it for a few yrs but not as long as us, i used to enjoy talking to her because i felt we both understood what each other was going through.
forgot to say monica i’m one of those people although i dig a lot for information and think i am well clued up on the subject of bc, if the doctor had said there was nothing wrong i would have skipped out of the place laughing.( how daft is that).
by the way i’m still suffering from chemo brain so sometimes i forget what i’m talking about, drives me nuts, so please bear with me and if i say anything you do not understand please tell me.
how do you both feel about being re-dx a long time after the first dx, i couldn’t believe it, i always thought about bc every day, but when i reached 15yrs i genuinely felt i had beaten it and felt quite proud of myself, and i was feeling more confident and happy, then back it came, first time round i felt i dealt with it physically much better than the 2nd time, so i don’t know how i’ll do this time, i’m getting older plus i think your body takes a beating with all the surgery, chemo and drugs they give you. i suppose that is a price to pay for keeping alive.
sorry to ramble on you’l both be glad we’re not talking on the phone, you would have a sore ear.
lots of love
reneexx

hi renee and monica,well glad the mammogram wasnt too bad renee, I know what you mean everytime they start looking at a different bit of you, its oh no what are they looking at this time.I dont think I can remember life before bc either one minute I was a young mum and fit or so I thought anmd the next minute my world had fallen apart. Monica talk about being misdiagnosed , the first time I had bc the doctor told me it was fibroadenosis said I was young and had breast fed and sent me away, that was in the may , I kept going back cos I had this gut feeling it wasnt right. He convinced me in the end that it was all in my mind and sent me to see a psychologist,I finally plucked up the courage to go back to the drs and ask for a mammo, he wasnt very happy but sent me,even after I had a suspicious mammo he said lets wait and see in 6 months time, I eventually sawa surgeonand got operated on the following january of the next year,when they told me I had bc I as so angry, I could of easily believed him and walked away it was so scary, I tried to complain but no one listened to me so gave up hadnt got the energy, but I certainly wouldent let them treat me like that agin, so persevere, its your life you are talking about and we dont get another one.Let us know when you have your treatment plan in place and renee hope your results come though soon and you know what you are up against.the chemo certainly knocks the stuffing out of you and the drugs make you feel so old. I am off tomorrow until next thurs so dont worry if you dont hear from me dont know if I will have access to computer while I am away.So look after yourselves and take care love suzan xx

hi suzan,
thanks for that reply, i’m bored to tears just now, not because i’ve nothing to do but because i don’t want to do anything, it’s not real what we have to go through, we are in the doctors hands, anyway hope you enjoy your wk off, are you going on holiday, if so have a great time.
Love reneexx

hello there,
Renee, I am glad it wasn’t too rough today - it is horrid the way every single thing they say or do has a meaning, isn’t it. its just so important, it’s your life.
its scary how many people are misdiagnosed - I was just furious when I saw the letter, but I’ll see what they come up with.
Suzan hope you have a great holiday - you are doing so well to be at work - I haven’t been since I was diagnosed except to pick up some bits and bobs I am finishing off.
Renee when do you get your results?
take care and love
monica

hi monica,
hope to get my results nxt wk but it might be the wk after as my consultant is on holiday. i am not working anymore either, don’t think i am up to it anymore, wish i could, but such is life.
speak soon
love reneexx

Hi Renee
I hope its sooner for you, rather than later, but I have just opted to wait 3 weeks to get mine from surgery as my consultant was on leave - I just prefer to discuss it with him, cos I trust him. Its a tough one isn’t it? its important who you get to speak to.
Funnily enough I was at work today, dropping off some stuff and picking up more to do at home. I’ve been worried about them managing because I have a few teams I manage, but I think they are getting a new manager in to cover, who I know - he will fill my boots very easily, so that removes some guilt and I do feel better about it. I’m going to really try to just forget about it all, do these bits and then get on with getting myself put right. I had a good shop on the way home in the M&S sale, while I can afford to do it.
I’ve been thinking about you a lot, about all the scans etc, I so hope it goes well. Its hard, worrying, with all your family around you and trying to function as normal without scaring them. I find it best if I don’t tell my husband everything, all the time, because I’m worried I’ll wear him down, and I need him to be strong. I’m dead lucky, I have a close friend who has had a mastectomy for DCIS a few years after I had bc the first time, and also treatment for high grade precancerous cells in her uterus just before I was diagnosed this time, and she knows something of what I’m feeling, she is great at hitting the right note at the right time. We do a lot of supporting each other!
I’ve blathered on a lot tonight so will leave you in peace! take care, lots of love
monica x

Hi Monica,
Glad for your support, what results are you waiting for, is it to see if it has spread to lymph nodes, mine has always found a way there. It is very hard talking with family and friends because they do not want to hear some of the things you want to say, i can get very morbid, sometimes i say it in a jokey way and they get angry and tell me to get a grip, i can really understand they do not want to hear these things but sometimes you are feeling really frightened, at the moment i get times when i’m not really thinking of it, then all of a sudden i feel like breaking down, but then i don’t, i tend to keep my real feelings to myself. This is the 3rd time for me now and i just don’t know what is going to happen, but one thing for sure i will be getting chemotherapy, and that just makes me feel ill thinking of it, but i know idon’t really have a choice, if i want to be helped.
Do you remember the woman who i told you died on sunday, well i was at her funeral today and it was very emotional for me usually i manage to keep my feeling in check, but not today. In fact i went to friends house yesterday to see her family and hand in a wee card and after just one minute and one cuddle had to walk out again, i don’t know where the tears came from but i could’nt stop. I think between losing her and what is going on with me it became too much.
I think it will be a wk on tuesday when i get my results because my consultant is on holiday too, and i think she wants to be the one to discuss what is wrong and what is going to happen. I am quite happy to wait for her, but am starting to get a bit anxious as i keep thinking this is growing all the time.
I really hope you get the best results in the circumstances, and everything goes smoothly for you, but you are like me, when you have been there and wore the teashirt, it is a lot harder to take, mabe it is because you know ( or mabe don’t know ) what is in store for you.
Lots of Love Reneexx