Sorry for not replying for a while, I’ve had a bit of an up and down week. My weekend away to Carlisle was nice, the hotel had a pool and steam room so I was able to chill and there were plenty of shops there for some retail therapy.
Then later in the week I get a call from the hospital, my appointment I was supposed to go to on Fri was canx due to consultant being ill, so Im now back in limbo. I was really hoping to get an op date, something to work towards, but now its all up in the air again and no idea when surgeon is due back Will ring them on Monday to chase.
Then my gran died on Thursday! Then nxt week my brother is in hospital getting his tonsills removed. Feel awful for my parents having us all to worry about.
Sukes - Just read ure post. Im the same, dont smoke, exercise lots, eat my five a day at least, cook all my meals from scratch, then to get BC at 29! Makes me think what was the point of looking after myself so well.
After having a few failed fertility treatments just over a yr ago then to get this I just feel so faulty.
Sorry about the health visitor. Some ppl are just so ignorant, they say things and I dont thing they realise what they are actually saying.
Also sorry to hear your results ((huggs)) Cannot imagain how you must b feeling.
On the subject of feeling like u’ve done something wrong, you havent. I always find for some rotton reason its always the nice ppl that awful things like this seem to happen to.
Shonagh - Wow!!! Thats such great news!!! Must be such a relief for you. Sounds like you had a fantastic surgeon.
So glad to hear from you, I have just been out for my first non hospital related trip out. Bought lots of fish and veg. I normally do try to do the 5 a day but quite often fail but there is nothing like a kick up the bum by BC to get you going again so white fish and spinnach it is.
Definately ring again on monday. I’m not sure if you read but my surgery was delayed a day for the same reason so we had a mad dash trip up to the hospital to see the new guy only to see the ill surgeon still taking appointments at that afternoons breast clinic!!! although, as the other half always says everything happens for a reason, this turned out for the better and Mr Shariff turned out to be a oncoplatic surgeon who it appears was the best man for the job so perhaps it may be worth while asking if there is anyone else you can see to at least get the ball rolling??
I’m so sorry everyone in here seems to be having a rough time of it especially Sukes and Mel. MY thoughts are with you.
Love, luck and ((((Hugs)))) to all. S x
Thanks for all the lovely comments and support from you guys. i know its not great news for me but i keep telling my self it could have been a lot worse. I’ve got no choice but to be positive about this. aleast hopefuly the Bast**** is out and all they are doing is precautionary just in case - the key word they keep on using is “insurance” for my body and as you say shonagh aleast my whole body will get the once ova.
Mel - It must be so frustrating for you I can’t believe your still in limbo. You tell them this is not acceptable. you may have DCIS but that does not mean its low priority - at the end of the day Cancer is Cancer and is should be treated with a matter or urgency and priority. Ask them what there escalation process is and you have been messed around enough and you want something done and if you need to escalate it well u kick ASS! - i would.
So sorry to hear about your gran - was she very old? and I know your brothers having his tonsills out next week but remember he’s a MAN! and his pain is always going to be a lot worse - thats from my experience any how.
I know its hard but try not to worry about your parents to much because with age comes maturity and i’m sure they will know how to cope. If your getting very worried about them try and show little emotion infront of them. I’ve had to take that approach because it was just getting a bit intense. They keep on coming ova and some times i don’t think they understand. My situation is different to yours - i’m asian with 3 little girls and in my culture girls are sometimes seen as a burden. They way i feel I just want my kids with me and I see that as pretty understandable under the circumstances. My folks are only trying to help and keep on saying we will bring your girls up or give us one and today was a classic - which I have heard b4 - it was give us the younger one and we will take her to India with us. I try to explain and they think I’m being stubborn and not accepting help. They think they are trying to take some of the pressure and burden off me but I could NEVER give up my angels. In the same tone I do understand there way of thinking because thats what they know and its part of asian culture so I have to accept they only want to help. - hope I haven’t borred you - I think i should direct a bollywood movie about this one.
Well I managed to finally get out of the house for the first non hospital related trip yesterday. I did a bit of shoping on my local high street. Stocked up on vegies, green tea and olive oil and came home and made the yummiest mushroom and spinnach spagetti with black pepper. followed by a fresh fruit bananna, strawberry, raspberry and blueberry smoothie so think I managed to fit in my 5 a day. I have become a bit obsessive with diet and foods that can fight cancer. My current mission is to find out how dairy effects oestrogen+ tumour. Aparently cows milk contains oestrogen and soy is to be avoided too so need to look into rice milk!!!
Sukes: Blimey you are definately going through it at the minute. I must admit I have found the cancer easier to deal with than the relatives. Definately a good idea to start that script though…seriously I really think there is an idea for a film there or at least a drama. I can just see me watching channel 4 and there you are one day. I dont know if its any use to you but I find keeping a journal of my feelings and thoughts really helps. I have always done it since I was a child. I have curviture of the spine and had a few bad years between 14yrs old and 18 having metal rods fitted etc and thats when I started it and have kept it going ever since. I dont write in it every day and sometimes it can be months but I always find when you read back things have never turned out as bad as you think.
This is the one place you cant bore people with your feelings. Even though we cantknow exactly how you feel we can all understand the sheer fear we go through in our darkest moments but like wise we can also laugh at the craziness of it all. Everytime I read someone is having a really rough time of it, like you at the minute, it makes me grateful for the good things in life. Just look at your beautiful girls and enjoy the fact that you created them and nothing can take that away from you.
Mel: Hope you are ok and so sorry to read about your Gran. I know ther is never a good time for something like that to happen and I bet if anyone says “it will make you stronger” you want to throttle them!!! I know you kind of expect to lose grandparents but when its a shock its awful. I know what you mean about worrying parents though. I find myself only giving my Mum the good news bits and the bad news bits I just gloss over. Your brother will be fine with his tonsils, lots of ice cream and juice and he will be right as rain you know what blokes are like so if hes complaining only take 50% of what he says seriously!!!
I will be thinking of you this week especially as its a bit of a rough one for you. I wont say the “Keep Positive” thing as it is currently driving me insane when people say it to me.
Well off for a bath to make me feel more human and then to deliver some wedding stationery (its a little side line I have) andto visit Mum. I have got real people from work visiting this week coming and am expecting the results of my multidisiplinary meeting tomorrow so busy busy oh and have to find out whether this brocolli/oestrogen thing is true. I know it sounds a bit mental but I need somthing to keep my mind busy and a target to work towards.
I have already changed consultants once. My original one was really not right for me. He didnt explain things properly and skimmed over my questions. This other one is the complete opposite and wouldnt want to go back to the previous one. I’ve rang the hospital today and was told that they are hoping he is back on Friday but that he is needing to see a consultation himself. They said they will know more on Fri and let me know what is going on. So none of this sounds very good, doesnt sound like he just has the flu So guess I just got to hold on til Fri.
Its amazin how it worked out for you. Must have seemed awful at the time actually having ure op canx. Only for it to turn out it was really a good thing.
LOL yeah I gone crazy on the health foods. I also stocked up on white tea as thats apparently even better then green. I’ve also got a bit obsessed about beauty care products and their ingredients and going to try and fine more natural ones or make my own.
Sukes
My gran was in her 80’s so I cannot really complain. It is still sad when these things happen.
LOL yeah ure right about man pain He should be fine, its just another one to worry about.
I have taken that approach with my parents. Put on a brave face as dont want them worrying about how I am coping, I must b doing a good job as my dad keeps saying its great that Im handing things so well
The only thing that is gettin on my nerves is stuff from friends “oh u look so well” what do ppl expect me to look like? Then one friend said “positive attitude” only for her to then spend the nxt five mins saying how down SHE was feeling!!! What r ppl like? I dont think anyone means any harm, just ppl seem totally inept on what to say, or gloss over BC as a defense mechanism cause to think about it too deeply would b too much for them to cope with.
Your family situation sounds complex. Like u say ure parents are only trying to help and thats the way they feel they are showing their support, but it must still be tough for u and extra stress. hehe yeah make the movie. I njoy dancing I’ll start Bollywood lessons and I can be in the background dancing away and get to wear all them pretty colours
Well Im off out to meet a friend. Thankfully this is one of the better ones who tends to just listen rather then give the silly “wow u look well” comments. This is one of my guy friends. I dont know about anyone else but I actually seem to find I get better support off the guys, they less inclined to say daft things about it and actually listen. LOL maybe its cause they are scared at a woman talking of womanly things and they just go quiet
Got a call from my BC nurse today, the HER2 status is negative Woo Hoo!! and I know some people are crying out for it but but it was a relief its at least one treatment programme less to have so now I just have to wait for next Monday to see if its chemo too and even with chemo it means hopefully chemo and rads will be over with by June and I can have my 40th without too much fuss and Italy in September here I come. DOUBLE WOO HOO!!!
Mel: Hope you are keeping ok and I’m sorry there doesnt seem a solution re your specialist. I am in touch with another lady who is in a similar situation with her oncologist and is having to wait for 6 weeks for her treatment programme as the oncologist is ill she is posting on the diagnosed on “How do you stay positive” in fact there is another lady in there who is still waiting for her hormone receptor status. The waiting game seems to be one we all play but I have come to realise I am luckier than most so am going to make an effort to stop complaining.
Sukes: Hope you are Ok. Thinking about you and passing on all my best wishes.
Had some work friends over today and caught up with the office gossip. It was nice to talk about none BC things and it was nice to pass on the HER2 good news for a change. Well thats it for today. I am doing the find something positive in every day so as I got the HER2 status info and it was what I wanted to hear thats is todays and I must try to be more patient. considering I only found the lump that turned out to be a cyst on the 10th Dec I should be grateful its out of me now. I think its years of working towards targets and month end that makes me think the rest of the world works that way too. Watched pots and all that.
Hope you are getting through the waiting time OK, let me know how it goes on Monday. Fingers crossed that you do not need further treatment. I can totally understand how u r glad ure not HER2 negative as the drugs do not sound too pleasant.
I too have a holiday booked in Sept. Going to Cuba with hubby and friends. Really hoping everything is done for then and recovered reasonably well as we all do salsa dancing and hoping to dance our holiday away. Fingers crossed that ure treatment is alsol done and dusted for then too. Its great having something planned, means despite everything there is still something to focus on that is positive.
Good news from the hospital, consultant is back on Monday and will see me nxt Fri, phew. Hoping to get a date for the op and something soon. Least I feel things are moving again.
Well that must be a relief to be finally seeing the consultant, when I saw mine with the diagnosis (the dreaded xmas eve we both started this journey) he actually had the diary infront of him so booked me in there and then so fingers crossed for a definate date for you,
Have I got this right, you have DCIS but are having mastectomy due to cupsize? it all seems such a long time ago now, probably not for you because you’re still waiting but because I have been on a round of hospital appointments ets its flown by and I am sure once you get your dates you will too.
Are you having reconstruction there and then and does that mean as its DCIS no chemo or rads? or dont you know yet. If its just the recon you will be salsa-ind with the rest of them back to the salsa club for some practice so you can set the floor on fire.
I went to my best friends surprise 40th birthday party yesterday. It was my first post operation social trip out. God I was boring myself by the time I had explained it for the 20th time but its new to them so I was nice and patient and upbeat about it. I’m reading a book called crazy sexy cancer tips and one of them was people witll take their lead from how you react when telling them so smiley shonagh it was.
Well its a lazy day for me today, I cant believe how one night has left me feeling so wacked out but It was lovely. Helen (the friend) thought she was going for a meal and didnt expect me so the party started her crying and then when she saw me she just bawled her eyes out. Bless!!!
My appointment with the oncologist is monday afternoon so will find out if its chemo or not. Definate for rads and hormone but chemo is still in the air. when it was only thought to be 1cm and grade one it wasnt too sure but now its 1.8cm and grade 2 they are in two minds as my premenopausal status means “I get very good mileage out of it” whatever thats supposed to mean. I’m really ready for it as I kind of like the idea of chemo getting into all the nooks and crannies anything else may be hiding but you know what they say “be careful what you wish for” so if I do have chemo and complain how bad I feel remind me of this will you.
Sukes: are you still out there, thinking about you loads and hope everthing isnt too bad. I was thinking you should be post op again so if you read this no need to reply just wanted to let you know I am sending good thoughts, wishes and ((((hugs)))) your way.
sorry I haven’t been in touch recently. Had a Wider LE yesterday so I’m sore under the arm and boob area once again. I still can’t drive or get for another 3 weeks now.
I’m glad to hear you ladies are doing okay and mel, i’m glad you’ve Finally got some apointments sorted.
Custard - Yeah it is low grade DCIS I have and yes mastectomy due to my small chest size making it impossible for them to get a clear margin. Have opted for double mastectomy for cosmetic reasons. I am going to ask for genetic testing as both my aunt and gran have had this then me at 29, so I presonally think its looking suspicious that I could have the gene. It does feel like such a long time since we were both dx. It was much easier coping with it at the begining as everything just moved so fast, then I suddenly had this five week lull. Hopefully once I see the surgeon on Fri things will pick up speed again. Hoping I am in before March as its my birthday on the 9th of it.
When they do the double mastectomy they are putting in expanders and should b able to get me up to a B. I will then need the expanders changing over to perminant implants. I know B aint big but when I’ve gone from smaller then a AA they will seem big to me, so least I feel there is a positive to all this. All them clothes I used to try on that I just couldnt fill. Hmm could end up being costly with the new outfits I will have to buy after It sounds like no chemo or rads, which I am sooo relieved about. Noone has mentioned anything about drugs so Im hoping they will not bother with it being low grade. Think I will b out of salsaring for about six months what with the time for expanders n all that. I think missing my dancing is what I will find hardest, as theres nothing that picks me up better then a good wiggle on the dance floor I will also miss a lot of my friends from there, but they been great so far meeting up with me for coffees, etc, so the true friends I have there will keep in contact.
I know what u mean about boring ureself explaining stuff as I get that all the time at salsa. Im the same as you, try and talk about it as cheery as possible, esp when out, cause I dont really want to go out on a night then end up just depressing everyone whos gone there to have fun. It does get quite annoying when I get the “but u look so well” and “wow ure coping with it amazingly” just cause I talk about it matter of factly doesnt mean Im not feeling bad inside. The worse ones are everytime I sit down after a dance look at me concerned and constantly asking “r u OK”. I dont mind if ppl have questions, its just really annoying me when they hovering about asking how I am with that look on their face all the time. I know they mean well really, but still bugs me
Awww sounds like it was a lovely surprised for ure friend. Glad you had a good time.
Good luck for the appointment on Monday and hope you get the treatment that makes u feel better long term. The thought of chemo would totally terrify me but I do understand where u r comming from, least any rouge cells would b taken care of. Let me know what happens.
Sukes - Hope u make a speedy recovery and the soreness dies down very quickly.
This is my first time posting a comment although I have been reading the discussions for a while.
I was dx on 18th Dec and on 7th Jan I had a mastectomy and ALS with Sentinel Lymph Node Biopsy. I went for my results last Monday and was devastated to hear that the tumour removed was Grade 2 and 25mm Ductal and I had 2/9 positive nodes. I now have to have a lymph node clearance on 5th Feb and, when I have recovered from that op, will need chemo and possibly radiotherapy. Although I am over the shock now it does seem very daunting to have to go through all this treatment - I have been helped by the comments on this site and would like to join in with you all in supporting each other.
I am 50 and happily married with a great, supportive husband and family and was delighted to hear the day after my dx that I am going to become a grandmother for the first time in July - it was great to get some lovely news to cheer us all up and make Christmas a better time than it would otherwise have been. I am fortunate in that I have a lot to be thankful for and to look forward to. I know there are some of you out there who are much younger and have young families and so it is much harder for you but everyone on this site is so supportive of each other that I know we will all get through this together.
Take care everyone and good luck with your treatments!
Welcome to the Breast Cancer Care forums where I am sure you will receive valuable support, information and advice from the many informed users of this site.
Breast Cancer Care have written a ‘Resources Pack’ for anyone newly diagnosed with breast cancer which you may find helpful to read, it is filled with information to help you better understand your diagnosis, test results and the various treatments available. You can order a free copy from the following link or you can ask for a copy to be sent to you via the helpline.
There is information in the pack about our other support services, including our helpline, tel no 0808 800 6000 which you may find useful to use at some point if you need to talk anything through or just need someone to lend an understanding ear.
Firstly Polly, Hi so sorry that you have had to join us but believe me there are some wonderful women through the whole forum who will have some wonderful words of wisdom, fantastic advice and always a shoulder to cry on and and ear when you want to rant and rave. I am 39 (no children, by choice thank goodness… you will understand if your readon and seen my treatment programme) and got my diagnosis on xmas eve. was 1.8cm ductal invasive grade 2 er+/pr+ no nodes and her2 negative. Dont put your feelings down, your age has nothing to do with how you feel and its just as awful for you as the rest of us. You will have better days and days when its not the first thing you think about. Oh and congratulations on the grandmother news. How fantastic and what a lovely thing to look forward to. There are quite a few BC Babes in here recently orwaiting tobecome grandmothers so you are in good company.
Just a bit of news for everyone else who has been reading me moaning onsince xmas eve…Well after getting off the phone to basically everyone and explaining everything here I am with the treatment programme and facts and figures. I am so impressed with my oncologist and his registrar I was begining to think they may have my house bugged because they did exactly what I wanted. Gave me the treatment programme they want to use and then backed it up with %'s and even showed us it on his blackberry palm pilot thingy.
Here we go…19 sessions of rads, 15 on whole breast and 4 targeted at the crater, tamoxifen for 5 years and as it seems I am the incredibly er+ the machine says zoladex injections in my stomach for 2 years is the way to go. The % with this programme are 94% of reaching 10 years + and if I do rads, tamoxifen and chemo it only goes up to 94.8%. they have said I can have chemo if I really want it and he almost insisted I have a second opinion but both Phil and I had discussed this long into the night on more than one occasion and had decided anything over 90% on the 5 years was good and to make a difference the chemo had to be over 1% or more
so we decided not to swap the box and Deal at programme option number 1 without chemo. A big scarey decision and I suppose only time will tell but the 3 monthly check ups for 2 years and 6 monthly for the remaining 3 and the monthly doctors appointment for the zoladex has re-assured me that I will be closely monitored.
Got a sick note too, for 2 months to get me used to the hormones and through radiotherapy (starting in about a month) and they have suggested if I can manage not to go back to work until its all sorted and settled down (mid April). Blimey that seems a long way off!!!
So thats it for the time being from what I can gather no more hospital visits until rads at Christies. Feel very wierd to think I start the menopause tomorrow. At least I am kind of prepared for it. Oh one small hic-cup the cyst in my left breast that started this saga has started to fill up again. Oh joy!!! it looks like its going to be a bit of a pain. I have an appointment in two months to have it scanned and re -drained but as its the thing that may have just saved my life I find it hard to be annoyed with it so I suppose I should welcome it back.
I would like to say thank you so much for all your wishes (they obviously work) I couldnt have got through the last 6 weeks without you and I know the rads and hormones will be so much more bearable with all you ladies good advice and tips. Thanks again (((((Hugs))))) to you all and here I go. Hot Flush City!!! good job i’m pale (almost blue).
Love luck and big huge thanks to all. Shonagh xxxx
Shonagh - Must b a relief for you to actually know what lies ahead now. Sounds like the oncologist was great. I am also happy that you do not need chemo. Like you say, u will b well monitored for five years so that should give you some peace of mind.
Probably a good idea not going to work, means u can concentrate on getting ureself sorted and not having to worry about work too. I’ve not been since I was dx on Xmas Eve. I’ve found the key is to keeping myself busy. I’ve spent the last week having a mass spring clean and when I not been doing that I been meeting friends for coffee. Although I wish treatment would hurry up because at this rate I will run out of sick pay on top of the waiting driving me nuts.
grr about the cyst, things always seem to happen at once dont they?
Hope u dont get too many side effects from the drugs. Let us know how it goes and how u r doing.
Polly - Hello. Sorry to hear ure results, do you have any idea when the chemo will be starting yet?
Congratulation about the Grandma part. Its great that you have something positive to focus on
You must be so relieved!
I couldn’t work through radiotherapy- it zonked me out.
I am being followed up every 6 months for the next 10 years (until I reach 50 and go onto the national screening programme) and feel reassured that if it all starts up again, the chances are, it will be found early again. I have been told that I am at high risk of reoccurance due to grade and age but I am as ok as you can be about it.
Many thanks for the warm welcome to this site and glad to hear from you Shonagh and Mel.
Shonagh - I’m really pleased for you that you won’t need chemo and good luck with the hormone treatment. It’s good that you have off time off work to adjust to it all and get yourself ready for the radiotherapy starting.
I have been off work since having the mastectomy 3 weeks ago and am signed off for the next 2 months - time to build myself up for next week’s axillary clearance and after that for the chemo. It’s great to have time to be able to get out and about, having lunch with friends, going for walks,etc and enjoying the better weather before being holed up at home for a week or 2 after the op. I’m not sure how long I will take to recover from the clearance - it’s the same length of time in hospital and rest for 2 weeks after so sounds much like the mastectomy and ALS. I’m not sure what my HER status is - the consultant mentioned I might need Herceptin at the end of treatment so don’t know whether I am HER2 pos or whether he just doesn’t know - must phone up the BC nurse and ask. There’s a whole new world of medical jargon out there to explore!!
Mel - good luck with your appointment - this Friday, isn’t it? It is hard for you waiting as it’s easier once you get a date for your op, etc - sounds like a big op with reconstruction too but good to get it all over with and get on with proper life again. I’m not sure when I start chemo - the BC nurse said they will give me time to get over the next op and then I will see the Onc probably before Easter and start treatment after Easter - I suppose it depends on how I am after the clearance and how busy the Onc is.
Sukes - How is your arm and boob? - hope you are recovering well and taking it easy. I think it will be me and you together for the chemo - any idea when you will start yours?
Shonagh, I’m glad your onc was real good and gave you a good outcome. As you say its good you don’t have to go through chemo and also you will be closely monitored.
I’ve been very down recently so have tried to stay away from the PC but i’m trying to pick myself up. I need possitive mental attitude and can’t find it!
Polly - i’m starting my chemo on the 5th Feb so next tuesday is my big day. I’ll keep you informed on how I’m getting on.
Sukes, how are you feeling at the moment? I hope you are feeling brighter. I know what you mean about positive attitude. I have been really good and positive up until now - I have recovered well from my first op - but am a bit down today. Perhaps it’s the weather, the fact I’ve been to the dentist today or the thought of my next op next Tues (the same day you start your chemo). I’m thinking of you - will also send you positive thoughts especially on Tues when you are off for chemo and I am waiting to be wheeled to theatre!!
Mel- Hope all goes/went well with your appointment today.
Shonagh - How is your hormone treatment going so far and how is your cyst? Hope all is well with you.
Have a good weekend, everyone! I’m off for some retail therapy tomorrow with hubby - weather permitting!
i’m feeling a bit better at the moment. I have had some healing, and the doctor has given me some diazapam so its spacing me out a little bit and the tension isn’t totally in my stomoch. i can’t knock the NHS because they have been great. They have also arranged for me to see a councillor on monday so hopefully that might help me put things into perspective. I’m frightened as this is the time of year when kids pick up bugs and colds and I really don’t want to get catch them.
as for my arm its not to bad. If your having your lymp node clearance you will need to ensure you do the exercises to ensure you don’t limit the usage. I’ve had to start with the basic exercises all over again due to the second op. My boob is also a bit more tender than last time but i think thats because the same wound was opened especially when it was healing really nicely. I showed my scare to my hubby today bless him and he holds his boob as if he’s the one who’s had the op - but then again he is a man!
Dont you find the wheeling to theatre really frustrating especially if you can walk i just don’t understand it. When i was having my first op i kept on persisting i don’t need a bed as my legs work fine and I can walk but they didn’t let me for Health and Safety reasons.
good luck for tuesday i too will be sending you positive thoughts.
How are you today? Hoping all is well and that your arm and boob are feeling more comfortable. I wish you well tomorrow when you see the counsellor- it will be good for you to be able to talk about your feelings to someone trained to help you. I think we have to take comfort in the fact that there are a lot of women out there who have been through all this and know how we feel - they have come out the other side and have said it’s “doable” and “not as bad as they expected”. Somehow we will get through it even if it seems daunting and overwhelming at the moment.
I am feeling frustrated that I have to start from stage 1 again after the op on Tues - doing the exercises and getting the movement going in my arm and shoulder once again - I feel so good at present that it’s difficult to take a step backwards and have to recover before having chemo.
I think I misled you in my last post saying that I will be wheeled to theatre as last time I did actually walk to the room outside theatre before leaping on a bed and being wheeled in to theatre - as it was the first time I’d had on operation under general anaesthetic I did feel as if I was walking to the gallows! - hopefully I won’t feel so nervous this time.
Well, Sukes, I send you all my best wishes for tomorrow and the start of your chemo on Tuesday - I will be thinking of you!