Hi,
I got diagnosed 2 weeks ago (seems like forever). Beating myself up for not getting checked sooner, but thought “hard bits” related to period stuff as they came and went. My visit to the breast clinic “to put my mind at rest” (Doc) went badly wrong!! Since then have had loads of tests. But results not in yet and I am going slowly mad! Don’t know stage or extent, but think the worst (Mum died from secondary bone) and my back started hurting a couple of weeks ago. We just know it’s probably lobular and been around for a little while. You all sound so brave and I just can’t stop crying. My whole body hurts now and I feel dizzy lots. I look at my 3 year old and the thought of not seeing him grow up just hurts far too much. Just feeling like hiding away. Am starting chemo first before surgery…but just want to get it cut out!!. Their new way of doing stuff apparently here. Have vile thoughts towards the world (and I’m normally jolly honest). Husband doesn’t want to talk about it much anymore…until we know what we’re dealing with…so I have to bottle things up and look chirpy. Seeing him cry when we got the results was just the worst thing anyway. No family, so thanks for letting me go for it here…!!!
Hi Gemdancer,
Welcome to the Breast Cancer Care chat forums. I’m sure you’ll get lots of support from the many informed users of this site. But, in the meantime as you are newly diagnosed you may find helpful BCC’s Resource Pack, it’s full of useful information, hints and tips to help you through your forthcoming journey. To obtain a free copy just follow the link below and one will be posted out to you, as it’s an A5 binder.
Resource pack : breastcancercare.org.uk/content.php?page_id=7514
I have also put below for you the link to one of our many publications, this one on lobular BC for you to read:
Lobular : breastcancercare.org.uk/content.php?page_id=5221
If you need someone to talk to in confidence then please do phone BCC’s helpline and have a chat with one of the staff here. All the staff are either breast care nurses or people who have personal experience of breast care issues. Calls to the helpline are free, lines open Mon to Fri 9am - 5pm and Sat 9am - 2pm, 0808 800 6000
Hope this helps.
Kind regards,
Jo, Facilitator
Gemdancer,
So sorry you have had to join us.
Don’t beat yourself up over the past and what has lead you to here, you have enough to deal with from this point on. I know its difficult but you don’t know exactly what you are facing yet so try to breath deep. You understandably are scared give what your mum went through but try to calm down and take this one step at a time.
It is a horrid, scary disease and we have all suffered the deep dark holes at one time or another and to be honest I am in one now mid way along my journey but the one thing I can say for sure is you have to take each step one at a time - the full extent of your dx (good or bad news, even though BC itself isn’t good news), then digest your treatment (it I believe makes sense to have larger tumours shrunk for the best surgical result but I had a mx so someone else may be able to advise you there) and your team will be doing the very best for you and giving you the best treatment for your BC. Take in your dx, deal with the chemo (its not too horrid, honest), and then deal with surgery. Bite sized chunks.
Your hubby is dealing with his shock at the moment and needs time and you two need to try and talk about your own individual feelings - your in it together even though you are the one with BC.
Of course you are angry at the world - who wouldn’t be? I haven’t felt or been the nicest person at times during this - its okay - those who love you will understand - those who don’t - well don’t worry about what they think.
I am sure other ladies with lobular BC and those who have had chemo first etc will be along shortly to advise you.
Best wishes, let us know your test results and how you are feeling.
We are all here for each other in this horrid but friendly club, xxx
Hi Gemdancer,
Just wanted to say hello and offer some support. I second everything that Ostrich has said! I wasn’t straight off the mark in getting to my GP either; similar to you with lumps coming & going….It doesn’t matter. You’ve done what you needed to do, and once you know what you are dealing with, you can get on with your treatment. Just try not to jump too far ahead, take it on in stages if you can.
Waiting for results is never easy. I am now post surgery and am in the middle of a near three week wait to see my surgeon for my pathology results. You somehow just learn how to get through these phases……
I had chemo before my surgery, so if I can be of any help, let me know. There are clear advantages to this type of treatment. You could have a look at the Neodjuvant Chemo thread which I started a few months back. Someone who has posted there might have a similar path to you. This site is a great resource; I hope that we can be of help to you. Do let us know how you get on.
P.S.
Ostrich, I’m sorry to hear that you are feeling low. It is so “up and down” isn’t it? Hope you can be “up” again soon. I think that what you did with the Chemo Top Tips is wonderful by the way!
Lomalinda
XXX
Hi Gemdancer
So sorry you’ve had to join us. I echo all that has been said above but I wanted to add something.
I was 34 when diagnosed (18 months ago,lobular invasive) & at the time my kids were 4 and 1 years old. The thing that got me through, especially in the early days was them. The most important thing for me was to get better to be there for them, above everything else. It kind of took the helplessness away from me & gave me the strength to still smile & laugh because with little children you have to, no matter what you are going through. You know when your kids are ill & you feel so helpless & wish you could be ill for them. Well, that was how I saw it - I was having to go through this rather than them.
It really broke my heart to put my one year old to bed not knowing if I’d see him turn 2 or 3. But by taking each day & stage of treatment at a time you find yourself getting higher up the mountain you were once staring up at.
I got them to help me shave my hair when it started to fall out from the chemo - again, I had to laugh about it for them which helped me through it.
I had WLE, chemo followed by radical mastectomy & am now recovering from my recon op 2 weeks ago. I have come a long way in 18 months & feel a stronger & better person for what I have been through. I turned my anger into something positive - I now don’t get angry with the world, it may sound strange but I see that I’m lucky to have had the chance to value my life & the people around me - others plod on like I used to not knowing how it feels to have everything you love threatened. I hope that makes sense.
Your aches may well be psychosomatic & when you get your results you will know better what you are dealing with so will prbably find they’ll disappear. I wish you all the best with your treatment & feel free to rant on here anytime - I know I have!
All the best
Alison
x
Hello! Please stop beating yourself up. I first went to my GP in Jan 07 with pain in breast and lumps. I was referred to a consultant and diagnosed as having benign lumps after biopsies etc in May 07. After a routine mammogram a year later I was recalled and following more tests was dx with a 5cm lobular cancer in August this year. I am bitter if I allow myself to think about it, but I don’t have time for that right now…just have to get through all this first.
The first thing I did was change my consultant. Lucky for me I work in the medical world and a couple of phones calls from one of my colleagues to a fantastic breast consultant started things to move in the right direction. I was offered chemo prior to surgery but declined and went straight for the mx, as my lump was behind the nipple, so lumpectomy would have been a bit difficult anyway. I don’t regret my decision, but I know there are many who would not have made the same choice as me. Like Ostrich I am now undergoing chemo which I was terrified about, but it’s nothing like as scary as we all imagined, and there are a few of us who are going through this together (see the FEC Oct 2nd thread)…this may give you some encouragement.
I was told lobular is not worse than ductal but jst much much harder to detect, which is why tumours are so often larger. I too had awful pains in my back before mx. it seemed to travel between my shoulder blades. this has now gone, and I was told it was the lump pressing on nerve endings, so don’t worry too much.
I don’t know whether I have been of any help but I would be happy to answer any questions you might want to ask. I hope you get the full picture soon so you can start to get your head straight.
xx
Gemdancer,
Hi, youre story is like a mirror of mine. I found a lump that came and went 6 months before I went to the doctors, who like me thought it was hormonal. The hospital thought it was a well. Clear mammogram, not suspicious scan but they decided to biopsy anyway. 2 days later I went back for the results thinking they would say it was fatty tissue to be told it was invasive lobular. I cried for days, so did my other half. Im 44.
That was end of January this year. Ive had the mastectomy, path report showed that the lump I was feeling was a cyst and my cancer was a little further away under my nipple. Ive hated the world, why me, all my plans dashed, 2 teenage boys to sort out etc. But I have friends who have/had breast cancer and they have been amazing support for me. And friends who havent. I used my breast a nurse alot. Always ringing her and saw my GP an embarrassing amount of times. Chemo has finished and Im back to work now. I still have aches and pains but Ive had them for years and they come and go.
You will get through this although at the moment you think you wont. It is so much easier knowing exactly what you are dealing with. The waiting is the worse bit ever. I waited for a month for my operation and 17 days for the path report to come back to find out what was what. Horrible time. In the end it was 19mm, clear margins!, grade 1 with one node positive hence the chemo.
Lots of ladies on here will give you supportive stories. Ill look out for youre progress.
Lyn x
hi,
just sending you a great big cyber hug and letting you know you just got yourself a whole new big family, who will always understand and support you. You may not have the best dx but you definitely won’t have the worst, so join us all in the middle. Let off steam and then when it settles, you will be ready to get in there and do what you need, to be able to carry on with your life again. The stats are really high these days, about 85 % in general so no buckets around here to kick for a while if ever!! Sorry I have the worst sense of humour, since getting BC and can laugh at almost anything these days.There are good happy days ahead between all the medical bits, promise.
hugs,hugs, hugs
Lily x x
Hi Gemdancer,
please dont beat yourself up about not going sooner. Alot of us could say the same. You will come to terms with this but it is very raw at the mo. I spent many hours crying at first but slowly and surely they dried up (still have my moments) and I began to concentrate on treatement etc. Stress can make you dizzy, remember to eat and drink properly to stay stong. I read on another thread couple of days ago someone was feeling dizzy and eventually realised they had only had 3 drinks in a couple of days, needless to say she was getting dehydrated.
I too am having chemo before surgery. Have 2 more to go, one this thursday. Then I probably be having an mx or I may ask for bi lateral but I can only do one thing and concentrate on one thing at a time. I will deal with tomorrow…tomorrow!! By having chemo first it has the benefit of tackling any other possible cells in the body first so dont worry about doing it this way.
We are here for you, I;m sure hubby will come round eventually, he too needs time to get his head around this.
we are all here for you,
take care
hugs
Chris x
Hi Gemdancer,
A very big hug.
I only joined this this forum last week when I to was diagnosed with lobular breast cancer and like yourself my whole world seemed to fall apart. I am waiting to have a bi-lateral mastectomy on the 18th. Keep linking up to this fantastic website as over the last few days the support from all these wonderful people has enabled me to think more positively about the future. I am taking one step at a time which for me works. I am trying to eat well so that my body will recover from the surgery quickly ( that is what you must do to stay strong) and I think Chris is so right when she says that the stress can make you feel physically unwell. Remember we are all here for you and loads of people can offer you advice. I can’t promise to link up every day (some days the black cloud moves in ) but feel free to let all those worries out rather than bottling it all up, there are loads of friends here to listen.
Big hug
Catherine
Just a big thank you to everyone for talking to me when I felt so down. You just hear the words bc and give up…or at least that’s what I felt like doing. I am no longer lobular girl…ductal (in funny shape) was confirned after latest lot of pathology. I still don’t know all my terms. Looks to be a big tumour which is scary, have started chemo this week (feel sick all the time) and they are going to throw herceptin at me later on. My scans came back clear for now, so what a huge relief and yes…some of my aches and pains melted away very quickly after that!!! Mad old me!
Chris - I hadn’t realised how little i was drinking either…thanks for the tip. I think I will be making a decision similar to your soon…so let me know how you get on with your thinking.
I feel like I have found a wonderful resource here and some people to talk to who really understand. It’s good not to feel ao alone anymore.
Much Love,
Gailxx
Hi Gail,
pleased to hear you are coming to terms with it and now ready to find out a bit more and realise that you will never be on your own now. Clear scans is fab, congratulations. Good good pains are going too, you still get all the usual stuff like colds and headaches while having Bc they just spook you more as you start to expect the worst all the time. This is not the case there are many good days and birthdays and Christmas and all the usual to enjoy once this takes a bit more of a back seat in your life. You will find chemo gets you into a bit of a routine of bad days, ok days and good days. make sure to plan lovely things for the good weeks and try to get a little bit of fresh air when you can, it makes you feel better. Most of all remember they see people like us every day and know what to do. Anything that kicks you hard kicks the C too so is getting us back to normal life
big hugs and lots of luck
Lily x
Hi Gail,
how are you doing with your chemo? What are you having? Hope you are taking all the anti sickness pills they give you. I too felt queazy, especially after ac and so on my second dose I told the onc. and he gave me a px for more anti sickness pills that I could take as and when required. Does your son go to playschool at all to give you a break in the day? Rest as much as you can especially when you feel really tired. I have 1 more tax to go on 27 nov. I didnt think the time would come when chemo was over but hey, its just down the road and will be for you too. As Lily says you will find a pattern, routine to your chemo side effects and be able to plan a little and look foreward to the ‘I dont feel too bad today’ days! My 1st week of 3 always the worst then I begin to pick up slowly until next chemo.
hope you are ok
hugs
Chris x
Hi guys,
Doing Ok with chemo, but woke up in a bad bad mood with the world today. I’m on the FEC thing??? Still not used to my words. It changes to something else after my first lot of cycles and that’s when they hit me with herceptin too. Just read that herceptin is for adanced breast cancer, so that freaked me a bit…well a lot actually. I went away for the weekend just before my chemo started (it has been an early birthday treat to jersey from my hubbie…precancer booked)…our boat got cancelled and we ended up on the overnight very long ferry…getting to my chemo appointment an hour late. It was almost funny…but took my mind off the fear I suppose. Felt really ill that day (and still swaying from the boat). Because I am hospital phobic too (I’m a nutter!), I had happy pills which were very nice. Feel very icky. I think I may need more drugs. Feel like I should be doing more to look after myself too, but tea and doughnuts are just going down so well at the moment (I did get an apple down me - don’t worry!)
Still finding it so hard to read about all this cancer stuff. It’s just so werd how life changes so drastically isn’t it? Few weeks ago i was just a 41 year old, frequently knackered, wine and chocolate addicted Jon Bon Jovi stalker with a monster little 3.5 year old and a long suffering hubbie. Big worries were why is my house such a mess and why didn’t my Sky box record Heroes? My little boy is in nursery 3 days a week and they are being flexible which is great. Not sure what I’m doing with my job. (Had just got great new part time temp post which they were going to make perm…new career was starting…timing grand!!!). I have been working from home, but apathetically. I have days when I think I should be totally changing my attitude to everything because this is the C word and is big and days when I think that I should try to cling to normal life and keep working etc.
I just don’t know how to think. Did you get out and about much through your treatments? Do you still go to kiddy stuff? I feel like I’m keeping my little one a little away from me at the moment…like I don’t want him to get too attached to me and that’s sad isn’t it? I guess it is sill early days though.
Love,
Gailx
Hi Gail
I am SO sorry that this has happened to you.
Hang on in there - I was diagnosed 3 years ago had all the treatment and touch wood am still fine.
I too wanted to push away my children and husband and “distance myself” from them as I was SO scared of dying and thought if I was more distant they wouldn’t be so upset!! It’s a natural reaction.
My onc said to me " Give me one year of your life and I will give you back 30 more". I hung on to that in the very dark days and I hope you can draw some comfort from it to.
Sending you love
Alise x
There are no correct ways to think, I have some great days of positive thinking and some awful days of doom and gloom. I try to make an effort to have two good days out a week, whether I take my little boy to play then off to lunch, or just have friends take me out for lunch. These are spread out though because the day after i need my rest again to recover some energy, just keep plodding through and keep yourself strong.
Hi Gail,
you sound very melancholy this morning. I have to tell you that epi, The E part of FEC is a real beasty for some of us. It made me very emotional at times and feel not quite like myself, frequently had my eulogy going through my head and would make me fear the worse. That is only natural and something we all battle, you never know what will trigger it. I promise this settles with time and takes a little more of a backseat. I would say plan as much as you can in the ok and good week or it will take over and become a bigger part of your life than it already is. I had number 11 dose on Tuesday so a bit weird myself this morning but I am determined to at least get out the door for a bit, even if only to walk to the end of the garden and back. Yes must remember to walk back !!!
Herceptin used to be only for advanced cases as it was expensive (or people with private insurance) and new and lots of people did not get the chance to have it. It is a very successful drug. It is now given to anyone whose cells are HER2+++ this is about one third of all BC sufferers. So don’t panic about that one, it does not mean you are advanced, but you have not mentioned your stats. You can and should still be you, also they cannot change the job conditions as you are now covered by the disability act. Keep hugging your little sweety or he will pick up the vibes and then cause you more worry if he is unsettled. I think the epi is talking to you and it is not a very cheerful influence. Keep chugging along and have something ready for the good days. It’s the weekend!
Hugs
Lily x
Hi Gail
the first few weeks are the worst and then you roll your sleeves up and do what needs to be done. I believe the herceptin is to do with hormones in the body so dont worry about having that, there is a category on here about it if you need to read up a bit.
Yes ‘c’ does change our lives, it cant do any other, it hijacks us for a year which at the beginning seems to be forever but as you know time doesnt stand still and eventually you find yourself out the otherside and wonder how the heck you did it!. If it makes us treasure what we have all the more then that can only be a good thing. I think it helps us to put everything in life into perspective. I was working before this but because of risk of infec. was advised to stop. It was initially hard to fill in my days. I dont think I will have the patience that I once had with people, all the whinging about niff naff and trivia, I will have to bite my tongue a lot!. I dont think you ‘need’ to change your attitude, it happens. Carry on with your life as normal as the chemo allows. Get stuck into your new job if you are able and enjoy it. Some women do manage to work through chemo.
Yes, your initial reaction to distancing yourself from family is normal but so not necessary, enjoy every moment, love and be loved. A year is a long time to hang back, and who can resist the cuddles of a 3 year old?? (dont allow ‘c’ to be so b…y important)!
I dont get up and out much in first week after chemo but last half of cycle I can. I need to get into town and get some xmas pressies next week as the week after is my last chemo. On the morning of having chemo my friend and I end up in a little pub to have some lunch and a game or two of pool, it is good fun and I know a day or two later I wont be eating much for a while. I just have to make sure I dont hook my ‘hair’ on the cue!!!
I cant say I envy your boat trip, I am seasick, car sick, flying sick etc! My head would have been over the side all the way home!. What is Jersey like? I love travelling but ‘getting there’ really takes the edge of for me. I won club class flights to New York a few years ago and spent 8 hours feeling like I would never be able to stand up again. The toilet on the plane was very nice though!!! Shame the food didnt stay in my tummy to really appreciate it.
Doughnuts sound good to me. If its what you can eat then go for it. I had bacon butties for tea last night but added a peeled apple and pear just to feel I was doing myself some good. The first week after tax I struggle to eat anything (or drink much) but I tend to make up for it in the last half of the cycle. Nothing ever tastes that good but I know I cant be strong on fresh air.
My friend bought me lots of energy bars from a health shop so that on ‘I cant eat’ days I literally nibbled bits off a bar over the course of the day. They had 500 cals in each bar, scary stuff!!!
Must get up and do a bit of work (just a bit…) mayb e…
take care
Chris x
Hi Gemdancer,
Please don’t read anything on her2-positive cancer that is more than three years old. The combination you are getting is so much more likely to work than what was widely available even five years ago. I was diagnosed in 2003 with a bad her2-positive cancer and I was one of the few patients at that time to get taxotere. I managed to miss out on the herceptin trial, but got it later when the trial results came out. So, all in all, my treatment was a complete mess compared to yours and yet here I am five years later. Since herceptin used with chemo cuts recurrence by about half, I would work on the assumption that you will be around.
You can also avoid reading about anything hormonal, unless they are also putting you on tamoxifen or an aromatase inhibitor, since herceptin is not a hormonal drug. The following categories of stories can also be safely skipped over: findings in cells (almost never have any practical benefit for current patients), new findings in animals (take too long to come into practice), anything on non-her2 positive cancer (the different types seem to have their own rules), anything on elements of cancer that you cannot control. That leaves basically the literature on the controllable factors that might help one survival a her2 positive cancer.
Having followed the cancer survival literature over the years, I can tell you what the literature suggests about the controllable factors associated with improved survival of breast cancer. First, try not to put on weight, since study after study has found that added weight is bad for survival. The best thing is just to keep a steady weight on chemo. It helps if you keep anything tempting out of the way when you are on steroids, particularly the elephant doses they use for taxotere. The one time I had trouble was when I visited a friend right after chemo: I ate half a box of chocolate biscuits at her house. Even then, my chemo nurse says that I was the first breast cancer patient she knew who hadn’t put on weight on chemo and I think it was because I knew that added weight is not good. Second, try to walk half an hour most days of the week. This has lots of benefits. Studies over the last five years have found that gentle exercise helps to prevent fatigue, but this was the opposite of what I was told as a patient. I had radiotherapy when my child was a toddler and would go to radiotherapy, take a half an hour nap and then take a half an hour walk (o.k., I was a bit of a know-it-all as a patient). I never suffered from fatigue, even though one of the nurses said that I would definitely get it. Exercise also prevents bone loss if you undergo chemopause, and a number of studies have linked exercise or increased physical activity with decreased recurrence, but perhaps only in women who eat enough fruit and veg. You don’t need to be Paula Radcliffe, either, just do what you can and later try to work up to the recommended amount for adults. Thirdly, eat five fruit and veg a day. This seems to prevent recurrence, but perhaps only if combined with exercise. On the bright side, the trial found that ten fruit and veg a day, which is recommended by some popular authors, was no better than five a day for preventing cancer recurrence. There is also no clear support for ditching dairy, but eating more than two servings of red meat a day seems bad for recurrence (and for heart disease and loads of other reasons). Finally, switching over to olive oil and avoiding foods that are rich in omega six fat (corn oil, sunflower oil) might be a good idea. This is something that is only for her2-positive cancers. A scientist who has researched the effects of fatty acids on her2 positive cancer cells found that oils present in olive oil make cancer cells much more chemo-sensitive and herceptin sensitive. He thought that this should be trialled, but it doesn’t seem to have been funded. Just use the olive oil to replace what you usually use instead: weight gain seems to worsen cancer outcomes, after all. Also, I know someone who put on a lot of weight and she seems to have survived breast cancer but now has diabetes to contend with at the age of 46 and her doctor says it was the added weight.
Do hug your three year old, unless he is full of cold and you are neutropenic. I understand where you are coming from, but really regret that I let cancer go in between me and my boy so much when he was very little (which includes too much time finding out info on my cancer that wasn’t really helpful, which is why I have posted so much above. That really is all that is known about survival). It took me a long time to rebuild my bond with my lad.
Best wishes,
Christine
Can anyone reading this help me please.I am very overweight[not obese]and have been for years.I neither gained nor lost on chemo.My mum had a similar shape to me and went to Weight Watchers where she lost loads of weight.Then she discovered she had multiple myeloma.She died soon after.I keep remembering how happy she was when she lost weight.Whenever I start to lose a bit I panic and try to put it back on in case it is the cancer.I know being heavy like this is bad but I dont know what to do.Vx
PS Christine what an amazingly helpful post.
I know mine doesnt belon here-I’m not lobular’