38th tamoxifen - waiting for summer in the bus shelter

[Gigondas]

New thread.

Good luck for your last day betsy

welcome swallowedAFly but sorry that you are in this situation..what a shock for you.
notj that sounds a bit thing from your boss -what does 'back to normal " mean ?

Swallow, I am not up to date on treatment for dcis, as far as I know it is not considered cancer, but a pre cancerous condition. But it is good they have caught it early. What a shock for you. You are welcome here.

Notj, what a shame work are piling on the pressure. Are you in contact with macmillan? I know they have an employment section. They might be able to mediate for you.

Swallowed glad you found us
I found a lump myself and went to the gp who referred me. Had biopsy mammogram and ultrasound which confirmed it was cancer and then had to wait a week for more detailed results
Ive had a lumpectomy so far which I have to say is amazing scar is healing well and my boob looks the same as the other one.not that I'm really bothered but I was surprised ! I had a sentinel node biopsy at the same time which unfortunately showed cancer there too so my treatment is chemo then node clearance then radiotherapy then tamoxifen. Not everyone has to have all that though my friend who also had grade 3 only had a lumpectomy and radiotherapy
If yours turns out to be just dcis it will be easily dealt with
You do need to find out what happens next really are they ringing you ?

NotJ sorry about your hassles let us know if there's anything we can do to help x

swallowed DCIS is incredibly common, it is just most women don't know they have it. It may not even show up on mammograms or even ultrasound. When I had a mastectomy because they hadn't been able to get clear margins on my lump it turned out I had DCIS throughout my breast but it had not shown up in any of the previous tests. It is one of the question marks over the screening programme that even DCIS that does show up in mammograms may never go on to be a problem for a woman, and yet once diagnosed it is treated, which means many women may be being over treated. As you say you have even jumped the mammogram stage. The irony is that often the treatment is a mastectomy rather than lumpectomy as there isn't a definable lump that can be excised. I know several people who have had mastectomies as a result of DCIS and that is it, the end of treatment. HND who pops in occasionally had a mastectomy and reconstruction for DCIS.

Even most lumps are not actually nasty, and many of those that are are easily treated.

And for the record even if for the small minority of us where something in the woodshed does turn out to be really nasty there are plenty of us here who can vouch that even if the treatment isn't nice you get through it and have a really good chance of a long life. I had a really nasty lump 12 years ago, very aggressive and fast growing, a lymph node involved, mastectomy, chemo.

Nj I am not up with the legislation as when I was dropped by work after chemo I had to resort to a constructive dismissal case but you are now covered by the disability legislation. I would seek advice from Macmillan as they are very good at supporting those in employment. If I were your boss's boss I would be making sure your boss got a complete briefing on your treatment, it's effects, mentally and physically, and the long term demands in terms of supporting you in employment, and giving them training in how to handle it. That is as I understand it the minimum required in terms of employing those with a disability, asking when you are going to get back to normal is definitely not on, legally, let in terms of good management practise, let alone in terms of being considerate to a fellow human being, let alone morally .

Hi everyone.
Today's the day ... or at least the next day in the treatment. At lunchtime I'm off to have a port fitted and then have my first T-FEC chemo. Yesterday, I had bloods, weight (oh dear), height, MRSA, tests done and CT scan.
DH feeling rather under at the moment. From being a very healthy family ("we don't do sickness") we've changed into a family with good knowledge of the local hospital. DH had some hand surgery recently and has been fretting about full recovery from that; we still worry about DS2's CML even though he is living a very active life; DMIL is demented and now I have breast cancer. Just hoping that DS1 is OK ... he's out in jungle (literally) so we are concerned about him too!
Anyway, work is still being supportive, I'm now telling people when I get the opportunity (a mass e-mail would hardly be the way to do it). I've still got the sacroiliac pain I've had for 3 months so the thought of some extra pain from the port procedure isn't great. And then there's the effects of the chemo.
But, so many of us go through this nowadays ... and treatments and care are constantly improving. Its doable ... but not what I intended to do this summer!

Good luck lily hope it goes well today

Hello everyone I'm back pulling my head out of the sand. I apologise for not being around, before work has been manic and two weeks ago my beautiful friend lost her 4 year fight against the bowel cancer. The sun shone for her last Thursday when she got us all to wear pink as she left us in her flower and fairy covered coffin. We then drank prosseco and ate pink cakes as we remembered her 100 watt smile and ability to giggle on even the worst day.
So I have really got to get on with this tomorrow is Op day. Had my pre-op assessment on Monday a little bit scary as I have never had a DVT risk assessment before and apparantly I'm fairly high risk for that due to varicose veins and previous leg surgery.

One thing I'm finding really difficult and in fact as yet haven't started is as I am a single parent I have been asked to write a letter of wishes for my DD should I not make it to the other side. I am finding it really hard to know what and how to put it. I am very lucky in that there would be a not inconsiderable estate for DD to inherit and I have trustees in place for it, but I need to detail what I would like them to use the money for (mainly to prevent ExH having uncontrolled access to it to fritter it away). I feel a bit of a wimp not even able to write a letter of wishes when the beautiful girl was able to plan every last detail of her funeral, but today I will man up and do it.
The hospital has Wifi so I will be able to log and read all that you have been up to tomorrow.

It's only 9.45 and so many posts..!

NotJ, was he just being male and stupid when he said that, or was there an underlying threat?

Yay to KitKat for sleep.. I'd say definitely steroids weren't helping. I was like a hamster on a wheel with them.

What a shock, Swallowed, though as the others have said DCIS is v.common. They're not too sure on percentages, but think it's only in about 10% of cases that it turns malignant. The problem is they don't know what triggers that. As Copt says lots of women have it and it's never a problem. I had a relatively small, but highly aggressive lump, but also extensive DCIS so had mastectomy, chemo, rads and am now on tamoxifen. I'm three years on now though and totally fine again.

Lily, sounds like a heck of a day. Will be thinking of you. Hope it all goes as smoothly as it can and wishing you no side effects xx

Lone your head must be spinning. So sorry to hear about your friend. I haven't a clue how you write that sort of letter. Have you a trusted friend who can act as guardian/ custodian. Someone who knows you well, so would know what you want. you will be fine tomorrow though. Honestly, I know it's scary but we've all had ops on here and all are v.much still here. Will light a candle for you and burn it bright.

Betsy, have a good last day at work. Hope it's not too emotional and they at least buy you a cake

How are you MAS?? Hope the tingling's not too bad and wishing you no nausea.

Got to go and see surgeon later so she can check her handiwork. I predict howls of outrage, as my breasts still don't match. Not quite sure how or why, as she put in a far smaller implant on the preventative side, but it's still bigger than the cancer side.

dashing by to say hello - lots of love and kind thoughts to lone for tomorrow and very sad to hear about your friend- send-off sounds very lovely though.
Loads of good luck to you lily - will be thinking of you.
smee ! hands ok,prickly but ok- just feel really dried out and like a husk !
swallowed -as there others have said,DCIS is v common and very treatable,so that's good.

lone I am so sorry you lost a friend. I understand why those who have the responsibility of being trustees might ask for a letter, and why you, who has lost a friend to Cancer might be struggling with issues of mortality, and being involved in medicine yourself albeit animals, might be struggling with being a patient, I gather that they are the worst , but the chances of making it to the other side tomorrow are overwhelming, not unakin to making it across the road without being hit by the proverbial bus. I didn't ever get around to writing that letter though I have always had some very strong views about how DH would need to be supported and supervised in parenting my girls, because though I had odds of 40% of not making it, I knew that Even if it all went pear shaped I would have time to do it properly having had chance to think about it fully, and be in the right frame of mind. Even my friend who had one of the shittiest prognosis going had four months (and was told it might even be as long as ten years, it happens). I hate to use this word but if you do find yourself facing death, and you don't any more than we all do, it is a bit of a journey and you do come to terms with the prospect, realise death isn't as scary as our society makes us think and planning your funeral is actually quite cathartic. However it is really scary at first because you have all these feelings to deal with. I am sorry but I don't remember the exact details of your biopsy but they would not have waited this long if there was any indication this was anything that is not entirely treatable.

So I wouldn't approach this as your last letter but as a draft that in all likelihood, providing you are not hit by a bus, you will tear up and rewrite many times over the years to come. As you know Cancer isn't one disease but many and what happened to your friend is not comparable to you.

nj thought after I posted that I was probably jumping too quickly to fighting talk (well I would wouldn't I being a brave little soldier who has fought Cancer ) after my own experience. I agree with smee may just be thoughtless talk, may not have been meant as it sounded to you when you are feeling vulnerable, and may just require a word to clear the air.

lily hope it goes well, one treatment down is a treatment nearer to getting it over with.

kitkat glad you slept.

EMIN enjoy your wig, I still have mine, it is like a small dead animal in the cupboard next to my bed

gigs hope you had a restful night. Rads are always a tiring marathon, short sharp ones must be exhausting, thinking of you.

Smee I am a very organised person and the lovely mumblechum from legal had helped me draw up a will with guardians and trustees in it so legally everything is tied up. It is just telling them what I want they money spent on or not.
Copt I know the numbers and yes it is losing the beautiful girl that makes it harder, just very sobering to have a trustee approach you and ask you to write the letter just in case.
The hardest thing is I know rationally that having the op is the surest way to ensure that I am around long term for DD, but there are risks with any anaesthetic and any surgery so that slight risk that I might not be around and would have to leave DD to her twunt of a father who systematically puts everyone else above her is a very hard thing.
Anyway working all night tonight, then have to take car to garage in the morning so that should take care of any thinking time left.
See you all on the other side.

Very tough to know what to write then, Lone. Keeping busy makes sense until tomorrow. No point telling you not to worry, but we will most definitely see you on the other side. I will be thinking of you.

thank you for the reassurance and shared stories. i'm feeling like a bit of a panic merchant now. my surgeon rang me back today and it seems he may have overalarmed me yesterday. he spoke to the other surgeon who specialises today and called me back saying that the guy said to tell me to stay calm and that from what he's been told of the results so far it may well be something that doesn't need actively treating at this stage and it may just be a case of investigating, ruling out other nastiness and then me having regular screening to keep an eye on it.

so weird how mixed the info on dcis is as one site i unfortunately looked at yesterday said it is always responded to with surgery but the stuff my friend read said it sometimes didn't need treatment i would prefer to believe the latter.

my surgeon is now getting it across to the other guy in writing to formally refer and then he will get in touch with me with an appointment where he can go through it and explain it all to me. think my surgeon was a bit out of his depth which he did say to be fair.

i am crossing everything that it is just the dcis. apparently my breasts were full of fibroids, cysts etc and generally not very healthy tissue but i don't think that has a bearing on this as such as people can have fibroid disease without it being serious itms.

i would never have even known this thread was here - guess you only know when you need it and thank goodness it's here when people do!

Hi ladies, hope you are all well. I have been referred to the breats clinic for the 3rd time in the last 8.5 years. All the same breast oddly enough. 1st time was a lump while breastfeeding which they decided was a fatty lump, last year I had some slight puckering on the skin which checked out fine and now I have a strange spot on my nipple (on the end where the milk would come out - stopped BFing 5 years ago so not that) which is about the size of a small pea and seems to be filled with fluid. Went to the GP hoping he would drain it but he had referred me and the clinic just called with an appt on 9th July. Not too worried but I have other health things going on with dizziness, lower blood pressure etc so feeling a bit anxious. Thought I would come back as you are always so supportive here :)

I can't keep up with everyone so apologies to everyone I've not mentioned I'm thinking about you all x
Angry feet sounds like they are keeping a good eye on you and fingers crossed it will turn out to be nothing
Swallowed that sounds really good news
Lone good luck tomorrow hope all goes well and I'm really sorry about your friend x
Betsy hope your last day went ok I sobbed after mine. How are you feeling about tomorrow ?
Lily how did it go today ?
Gigs I hope your back is not too bad and mini gigs is giving you some sleep
Ruby lovely day again have you been knitting outside again ?

I've had a better day today, must make myself go out even when I don't feel like it as it does make me feel better. And I have robbie and olly to look forward to on Saturday ( senses no one shares my excitement on this ! )
What's for tea ?
Lasagne and garlic bread here

Hi Swallowedafly. Much depends on the sort of DCIS you have. Breast cancers aren't just one thing. Loads of variation. Some are politely behaved and can be treated just with something preventative like Tamoxifen and monitored. Others are rudely behaved and need surgery etc. Usually a lumpectomy unless people want the full works. So the specialist will contemplate it all and come up with a Cunning Plan.

Angryfeet, welcome! As nice as it is to meet you, I shall hope that yours is a short visit to the thread due to you finding out it's something else. Meantime, ask away and have something off the trolley. There's always plenty of and and various snacks for those waiting.

Keeping everything crossed for those having treatments soon...

Waving to Angryfeet. I hope you won't be here long too.

Hope Lily's okay and safely back soon.

Betsy, bet you feel totally drained after last day. Maybe a treat's in order.

No Gig?? Hope you're okay and back's easing up.

No time to post more, but really hope all those on treatment are okay-ish. Sunny here, got DB and DN coming to stay later, so am hoovering and making up beds. So rock an'roll..

thanks amber - a cunning plan will be good. i'm actually thoroughly BORED of my breasts! seem to have talked and thought about nothing else for ages.

Hello all,

No outdoor knitting today, I'm thoroughly tired out after my second session of the Macmillan course. It was interesting, all about goal setting (SMARTER goals), doing a gratitude diary and also talked about our feelings. Probably not much that would be hugely useful for me to share tbh! :) I ended up sleeping for a couple of hours when I got back.

Lasagne and garlic bread sounds lovely malt, not sure I'm having dinner as had a very late lunch after course and now not very hungry! Glad you managed to get out today.

AngryFeet welcome but hopefully you won't be stuck with us for long as it'll be something harmless :)

lonecat sorry about your friend :( the letter sounds difficult, have you managed to write anything yet?

notJ grrrr at boss!

lily hope today went well.

Waves to everyone, sorry I'm too sleepy to post more, but hope you've all had a good day, love to you all x

malt you are not alone! I'm going to see Olly and Robbie on 5 July. I've seen Robbie before, with Gary too, DH has a threesome bromance with them He was brilliant, a real showman. A friend of mine teaches in the school he went to and he is remembered as one of those pupils who plays up all the time but you can't help but like, it was hard to keep a straight face when telling him off.

Angry Welcome but hopefully this is a temporary stop. I'm sure the GP referred you because they know what they are doing when it comes to dealing with pesky breasts as well as rogue ones.

swallowed I had breasts that were like bags of marbles, and often painful. I thought at first that the other breast must be as full of DCIS as the rogue one but within days of starting Tamoxifen it became soft and squishy, no problems in 12 years, so I really don't worry about it.

It is Big Copt's 21st today. she is on the other side of the world but I am about to crack open the champagne as I think I deserve it after the 36 hour labour 21 years ago

Yay copt !
I've seen take that twice they were amazing and saw Gary Barlow in concert at our local theatre earlier in the year this will be the 1st time I've seen robbie on his own but the solo bit he did with take that last year was brilliant he's such a showman
Where are you seeing him ?
Going with my best friend
Ruby glad the course was good put your feet up now

Evening, ladies.

It's been a while since I first came by for some handholding and advice (years, in fact!) but if I could just stop by tonight please....like AngryFeet, am off to see Breast Surgeon tomorrow to check on some misbehaving lumpiness. Or thickening, in fact.

Always come away reassured in the past, but same old butterflies zooming around as every time is a new time. iyswim.

Makes me feel better just posting, so hope that's ok? (I promise not to eat too many of your snacks...ish...)

Meant to say happy birthday to big copt must be hard not being with her x