Hi,
I’ve just been diagnosed with DCIS and because of the nature of it have to have a mastectomy in a couple of weeks. Feel pretty rubbish about this! Especially as I have a 2 year old and a 5 year old (plus 20 years of other - chronic - illness that I’ve had to put up with…damn it!!). Is there anyone in a similar situation in Edinburgh - or if not, anywhere? The worst was not knowing but now that I know I feel pretty low, particularly now that I have to get all my Xmas preparations done within about 2 weeks!
Please do get in touch especially if you are in your 30s or early 40s. Thanks!
Hi Flaxhigh
Sorry I am not in Edinburgh in Cirencester in Gloucestershire but I know how you feel. I have had surgery and may have to have more after all treatment as triple neg so the may do bilateral mastectomy as precaution. I have started chemo and then rads. I also have two little ones both boys 11 mths and 2 and a half. and although they are your strength and keep you going it also scares me and saddens me as I worry so much for their future, I just don’t want to see them sad. Stay strong you will get trough this you have already proved to yourself that you can cope with a chronic illness. Good luck by the way I am 34.
Take care keep in touch
love
C
Hi C
I’m really sorry you have to go through this with such young kids - what a nightmare. I find that when I think of my 2 year old it pulls at my heart more in a way as he is so young, but then with my oldest I am more worried as he is old enough to understand. I think having to deal with all this with a 11 mnth old is horrendous, poor you. They are so dependent still. I haven’t told either of my kids yet. What can I say?
I’m afraid I don’t know what triple neg is but I know that I am dreading a mastectomy and what they find after that when they take the lymph nodes out. I will know more on Tuesday. I feel pretty upset with the breast clinic up here as I went there with bleeding from my nipple 2 and a half years ago when I was about to give birth and they said everything was fine. I continued to be worried but my GP just said: no, everything is absolutely fine, when now I read that they should have called me back after I had given birth. There’s little doubt in my mind that I wouldn’t have had to have a mastectomy if they had caught it earlier. Damn them!
The whole kids thing is what makes the whole experience such hell. If it was just me and my husband I’m sure I would feel VERY different (not that I don’t like my husband!!) I hate fear so much, I fear fear more than surgery probably, if you know what I mean…
Take care and stay strong,
L
Hi Flaxhigh
I am not in Edinburgh but Exeter in Devon. I was diagnosed with dcis, and have had to have a masectomy, because of the nature of it being close to the chest wall. I am seven weeks post op and am feeling, much better, the waiting is the hardest part, once the op is done, it somehow seems easier to deal with. This is a fantastic site, and we are all here for you, whether its information or a rant.
Take Care
Will be thinking of you
Sweetheart
Hi L
I know what you mean although I would not change them for the world I think that because mums are so protective if it was just me and my husband I would feel stronger to kick this bitch of a disease into touch. Iam similar to you I found a lump in my armpit when I was pregnant with my first, midwife said don’t worry just glands and you trust them so when it appeared again in 2nd pregnancy didn’t worry, how silly was I. They still say that it unlikely to be related as it doesn’t go from lymph’s to breast but as my lump appeared in a cyst form I think it is definitely linked but who knows and all in hindsight now. I feel really sorry for you I am able to hide it all from my two little ones but it must be so difficult with your eldest. Triple neg means that my cancer is not hormone receptive or Her2 receptive so after chemo and rads I have no treatment options you will get to know all of this I feel like i have read so much since dx 15/8 that I could be a bloody oncologist!!
Good luck for Tuesday and remember their is always someone hear to chat to, you are not alone.
with love
C
Thanks C and Sweetheart,
At the moment I am so exhausted (mainly due to my chronic condition) and I feel really bad because I just want to get through the day and have the children be asleep. I’m hoping this phase will end - maybe it’s the shock of diagnosis mixed in with the dread of what’s coming, but my kids are my life and yet at the moment I just want to be sort of left alone to lick my wounds… I seem to have to drag myself around to play with them. And I’ve never been away from either of them for more than a few hours and will soon have to be away for a whole 5 days! I know it could be much worse (and of course that’s what is at the bottom of my worry) but dammit, I could do without this…
Sweetheart - did they do the mastectomy under general anaesthetic? I’m terrifed of being knocked unconscious and they botching it and me ending up in a coma (you can tell I’m a worrier…!) Also, they said it was a 8- 12 week recovery. What does that mean? Have you got kids? If so, are you able to look after them yet? Do I need to get help in (my husband is at home (though not well himself - another story…) but we usually do fine together. But if I’m not going to be up and about for 6- 8 weeks…? At 7 weeks after your op, what are you up to doing, would you mind telling me? I’d like to know how much help to get in and for how long.
C - I really feel for you. Actually we should sue these people who have told it is just nothing…or chop of their breasts and see how they like it…!
Love to you both,
L
Hi Flaxhigh
It is perfectly normal to feel scared and confused following diagnosis and I just wanted to say that you are not alone in the way you are feeling at the moment, these are normal feelings and many people contact us at Breast Cancer Care, many of whom have said they have felt terrified and very low at some point but with help and support, you will begin to feel better in time.
Please remember that you are very welcome to contact our helpline for confidential support, a listening ear and any information that you may need during this difficult time.
The helpline number is 0808 800 6000 and is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
I hope you find this of some help.
Kind regards
Louise
Moderator
Breast Cancer Care
Hi…im not in edinburgh…in sunny stafford.
Ive only just turned 31 and was diagnosed in december last year after I stamped my feet to get some lumps removed as the booby unit had sad they were nothing to worry about due to my age…however i still want them out. I went up to the booby unit before my 30th…however as it wasnt urgent as such i was left til december the 1st…had a lumpectomy and got a phone call 4 days later and was diagnosed with stage 3 breast cancer and the doc could feel something dodgy with my lymph nodes. After the initial few minutes of shock sinking in…the practical side of my head kicked in…right…what now…i had my mastectomy and lymph nodes removed on the 15 december…i went in on the friday morning…and i was home on the sunday afternoon. I took it easy for the first week…no heavy lifting at all on that side…no cuddles on that side from my girls and slept with a pillow under my arm to make it a bit comfier. I did my exercises and was healing well when i went up to the hospital to have the dressing etc removed. When my eldest started back at school in the january…I did the school runs…and the nursery runs. Just take it easy for the first week…and just do what you feel you can do, if it hurts STOP…but dont overdo it. You do need to do your exercises YES it will hurt like nothing has hurt before but its very important that you do the exercises. I had 25 lymph nodes removed and 5 came back manky…oh joy. You will have nerve damage to your arm…your armpit will feel like someone elses cos you wont be able to feel it…and very probably a lot of your underarm will be numb. Sometimes feeling comes back…and sometimes it doesnt. Most of my underarm feeling has started to come back…yet i still cant feel my armpit…which considering i was extremely ticklish is great.
I had 6 months of chemo and then 5 weeks of radiotherapy, and am now on tamoxifen. Its a long road, but its dooable, just doesnt seem like it at the time.
Take it each day at a time Explain to your kids as much as you think they can understand. Inform the schools/nursery so they can keep an eye out on your kids and know if they are going to be and why they are upset.
My advice is as soon as you come round…have a look at your wound area, you wont be able to see anything as you will have a dressing there (which is tiny by the way, completely rubbish…about the same size as the middle of an ordinary plaster) When your dressing comes off, have a look, keep looking. It does get easier as you look at it. I didnt hide myself from my kids if they saw me getting dressed…and with a four year old you dont exactly get a choice. My kids dont bat an eyelid. They chose my wigs or rather ‘magic hair’ when i had my wigs. They came and sat on mummys bed when mummy had a ‘sore tummy’ on chemo days and generally kept me going. Although my husband has been really good through all of this…i dont think i wouldve got through it all without my girls. They gave me a reason to get up everyday, they gave me a reason to try and do things for them and with them…instead of crawling under my duvet and not coming out EVER.
Thanks Louise for telling me about the helpline.
Oh buttons - what a nightmare. Thanks for telling me about what to expect with the mastectomy. How old is your other girl? I haven’t said anything to the boys (my 2 year old is going to miss me over the 5 days they said I had to be in hospital - but otherwise won’t understand too much). My other son who is five and a half definitely knows something is going on so I am going to have to say something pretty soon. I don’t really want him to know the C word - not sure why as he won’t know what it is. I’m also rather worried about telling anyone at all in case they talk about it in front of their kids and then the kids say something to my son in the playground. God, I’m worrying about every detail here…ridiculous. You have been through the mill. Are you going to have reconstruction? I would like it but don’t know yet if I’m going to be able to have it at the time of surgery. Will know next week.
I can definitely see the advantage of getting under that duvet and not coming out…it’s like a juggernaut and I can see it approaching…
L x
Hi again Flaxhigh
Just wanted to let you know that Breast Cancer Care have writtten a publication called ‘Talking with your children about breast cancer’, there is a section for under fives which you may find helpful to read. It can be downloaded via the following link:
breastcancercare.org.uk/docs/talking_with_children_0.pdf
Best wishes
Lucy
Moderator
Breast Cancer Care
Hi
I agree with L it is a rollercoaster ride. My youngest child is twelve, and whilst undergoing tests I did not tell her anything, when I had my dx I sat down and explain everything to her and she reacted very well. She was due to go to the big school in Sept, and my op was due the same week, so I asked to change the op. Went in couple of weeks later, the school were fantastic when I told them, they also had a councellor there and she was brill both to me and my daughter. Rachel my daughter then decided that as oct was think pink month that she wanted to fund raise, so on her own she organised a cake stall, in a new school where she did not know very many people and raised £80, yours are much younger, I also have a 2 year old grandaughter, we told her that Granny had a baddie, then showed her, six weeks later I went to get my falsie and she and my elder daughter came with me. She sat watching facinated, then she said Granny has a new booby, we then went shopping and she told anyone who would listen that Granny had a new booby, it was quite funny. Somethings I still find difficult and accept offers of help when I can,t do them, and yes it is very frustrating, but the op is not nearly as bad as you think, I too was terrified of the anthesetic, but I ended up walking down to theatre chatting to the nurse. Don’t remember anything then till back in ward. My dressing was like a thin line of tape along the masectomy scar and the snb scar, covered with a large transparent dressing about 3inches by eight inches and this was left on for 10 days, Only had one drain and this was taken out on day four, it hurts and bit but is soon over, came home on day five, found I was quite tired, so went and had a nap whenever I wanted, still get a bit tired but have a rest and then am fine. I go for rads planning on Fri and then have three weeks of rads, luckily I did not need chemo. I hope this helps
Love Heather
Hi…my girls are 8 and 4…and obviously 7 and 3 at diagnosis lol.
My youngests nursery were the first ones to know…and were great about it…they promised not to say anything to her about it but to give out cuddles as and when and if she got upset…but shes a stubborn madam and hasnt batted an eyelid through all this. My eldest…well…i sent a letter into her school teacher…informing them of my diagnosis and that under NO circumstances was the word cancer to be mentioned at all. All id told her is that mummy had a manky boob and the doctors were going to take it off, but mummy would be asleep and wouldnt feel it. She was happy with that. I was furious as the following day of picking my eldest up she came out of school quite upset…so and so says you have cancer like her mummy are you going to die…you dont have cancer do you mummy?..well what do you say. I didnt say yes and i didnt say no…found out that the teacher had paired the two of them up together as support for each other…which i can see her well meaning effort…but didnt help much that day…i was livid…and the teacher knew about it the following afternoon put it that way! Most kids hear the word cancer and think the worst…well who doesnt…whereas id got my girls into thinking that it was just a bunch of naughty cells who were being really naughty and not doing as they were told…which worked for us. Now the other school run mums knew what was going on with me…but we had an unspoken rule…all chat about it stops on the kids coming out from school. Kids are resilient and bounce back pretty quickly, and deserve a lot of credit with how they do cope with things. My pair have been great. My youngest has caused smiles and bits through the year…mostly oh god ground swallow me up lol…my mummy only has one booooby…your mummy has two…in the incredibly quiet voice that kids havent quite grasped lol.
I was offered immediate recon with the mastectomy…but i wanted to get all my treatment done first and then i could have time one to deal with it all, and two to think about it…and im still changing my mind on a daily basis. Ive had to have a hysterectomy 3 weeks ago…they took the lot and several layers of fat as well…so the idea of having reconstruction where they take it from your tummy is seriously being forgotten about lol…cos it bleeding well hurts…childbirth is a piece of doddle in comparison is all im going to say lol.
As much as hiding under the duvet is incredibly tempting…thats IT winning…well thats the way i see it anyway. Ive carried on as much as i could trying to keep things as normal as I could…yes I got tired and went up for afternoon naps, and some mornings i couldnt get out of bed etc…but gave myself a kick in the bum when required and got on with it. Im a stubborn mare…im going to win, it wont…and i wont have anyone tell me different!
Try not to worry about what others will say…end of the day thats not important what they say or think…youll develop an incredibly thick skin as this road goes on…whats important is you and your family…so take it easy and try not to worry about all the small things. Easier said than done i realise that.
Many thanks for your comments, all.
Buttons you have put the wind up me about reconstruction.(I did natural childbirth and that was agony -admittedly they incuced me) I thought I would go for it if it was thought suitable but now I realise that means dealing with two rather than one wound. Frankly, I can’t make the decision about what to put in my son’s lunchbox at the moment, never mind make these kinds of decisions. My mind has gone kind of mushy. I definitely am not going to use the C word with my kids. I don’t think it is necessary at this stage.
But Buttons - or anyone - I put a notice on the DCIS thread asking about why when I was given a DCIS diagnosis on Friday they told me that they are doing ‘staging’ and that they will get back to me with more information on Tuesday. Does this mean I am going to get a new (worse) diagnosis? And if so, why tell me I have DCIS (and give me a leaflet)? And if I’m not getting a new diagnosis, what the hell are they doing ‘staging’ for? I want to be stage 0, which I think DCIS is - will I now get a worse diagnosis. I am going mad with worry about this. Any advice would be gratefully received. And SORRY in advance to those already have a worse diagnosis - I I know I am being a scaredy-cat but I just need information to ease the waiting…
Many thanks
L xx
Hi L
I was diagnosed on 1st November, and have just returned home from hospital today following a mastectomy and full node removal.
All of your worries and concerns are perfectly normal. I still do not know anything - all I was told at diagnosis was that it was definitely cancer, and that the lump was 3.5 cm, and mastectomy was the consultants preferred option given the size of the lump, and the fact that they were reasonably (??) certain it had spread to lymph nodes. I was given the choice of having chemo first to attempt to shrink it - but quite frankly didn’t think I could sit about for 3 months waiting!
I did ask breast nurse why they hadn’t told me more ie type, stage etc etc as I thought they were hiding something from me. The response I got was that all health boards do things differently - some run detailed tests on biopsy sample, others don’t - they wait until they have the entire tumour to run tests - which is what my health board do.
So I now have to wait will Wednesday of this week to be told exactly what it was (or is??) that I have and what they plan to do next.
I have to say the mastectomy was not as bad as I had feared - and I got a pre-pre-med cos I was soooo terrified of the op itself!
I have 2 kids, one of 21 and one of 9. We have spoken quite openly with them about it - obviously in more detail to the older one, but the 9 year old understands what cancer is (although she did initially associate with it dying and nothing else), her school were told and they have looked out for her but she is apparently discussing it quite openly with her friends (actually told one of them that it was ok, it just meant that mummy would look like daddy on one side, and a normal mummy on the other lol!) - it’s suprising what they can comprehend. I have a copy of the ‘talking with children’ booklet - and it is very good, I would recommend it. It is all too easy to confuse them with other words and jargon sometimes.
Good luck with your treatment - please keep us informed. The people on here have been a tower of strength for me and I’m sure they will be for you xx
Margaret
Hello
I am in my 30s and have a 2 year old. My parents live in Edinburgh and I know there is a Maggies Centre there. I have been to my local one and found it a great help. They do women’s groups and other courses. Chances are that you would meet other young women there. Even if it does not seem your sort of thing to go to something like that, be bold and visit to check it out.
My 2 year old has been brilliant although it is really hard for him when I have been in hospital. He helps me check whether my hair has grown in any more over night and confidently tells me that it has. He also enjoys helping me put on the moisturiser that I have to ward against the side effects of Xeloda.
Sinclair
Thanks so much for your replies. It’s a bloody nightmare that’s all I can say. I’m taking a crash course on something I just don’t want to know about. I’ve got to make all these decisions and I can hardly think straight. Thanks Sinclair about telling me about Maggies centre. I don’t know who they are for - I’ve - so far - been told I have high grade DCIS but I do have to have a mastectomy in the next three weeks and also I might have invasive cells. I don’t know what half of it means - but I’m learning…
Love and hope to you all
L
everyone feels like that at the beginning. It gets easier once you get your head round what is to happen to you.
Maggies is for anyone with any type of cancer and their friends and relatives. They have a website, search maggies cancer Edinburgh and you will get it.
I’ve had mastectomy too and did have spread to my lymph nodes under my arm - they were all removed.
It’s a nasty business, but there is life beyond diagnosis, just a different one.
Take care
Hi
I am not from Edingburgh but am 40 with two young children 3 and 5. To be honest they are what are getting me through this. They have been great. My 5 year old girl seems to be ok - teachers happy with her - have not usd the C word but she is fully involved upto her understanding. She keeps asking me if I am ok! My 3 year old boy - well he has become a real mummies boy only wanting me and not at all happy if we mention hospitals. Having to tread carefully with him - he has also been waking at 0400!!! every morning to check I am still in bed and alright.
I am trying to make sure on good days we have some real fun so hopefully on bad days it will not be too bad for them.
I have had a wle and snb and a mastectomy with immediate recon - now on chemo had two lots - out of 6. The 6 weeks of rads and then tamoxifen. Looking forward to the end of april 2008!!
Take care, love
Anne x
Thanks for both of your comments. Anne, I don’t know what a wle or a snb is…What was your initial diagnosis and how come you were able to have immediate recon when you are now having chemo. Is it because you knew before the mastectomy that you would need chemo? I was told that I might not get a reconstruction if they found cells in my lymph nodes. It would be horrible to go for one, wake up and think you’ve got two breasts and then see you still only have one and realise that this is because you have invasive cancer.
Did you ever consider not having recon (I’m trying to decide which way to go) or were you sure you wanted recon? What kind of recon did you have? I’m thin so I’m not sure what options are open to me anyway. I used to have a tummy that they could have used but these last 2 weeks or so I’ve lost loads of weight - typical!
Love,
L
I had recon too from my back. I am also thin and small chested - which seems to work well if there is not much in your back. The plastic surgeon will pinch you and tell you what could work. I found it a nightmare deciding whether or not to reconstruct. Did you see this weekend’s Sunday Times? It has photos of women who have had it done in the magazine. I had immediate reconstruction and had all lymph nodes removed at the same time. There are also pictures on cancerbacup website that might help. It is a really personal decision and one you will not be able to make until you have spoken to the plastic surgeon. Mine has worked well so far but I fully respect the fact that lots of women chose not to do it. There is lots of advice on old threads that may help. Try searching for reconstruction. Good luck.