newly diagnosed - help

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i found out thursday 17th nov following test at breast clinic on tuesday that a lump i found was cancerous. i am having operation on 30th nov. told lumpectamy. i asked about mastectamy and was told its my decision and to have think first. my first reaction was to have breast off. but now having tried to read and research i just don’'t what it best thing for me. they have said same results with lumpectamy and radiotherapy. i have done nothing but read the booklets on this site, reading threads about absolutely everything.
some people may think this is drastic and they may not have had a choice in the matter. i am constant worrier about everything under the sun, and feel like having my breast off would re-assure me more.

i was in with doctor which seemed no time at all when she told me results, then i went and had talk with BCN for short while. she told me to go away and let it sink in and gave me a pack with some booklets in from this site. she had arranged to come and see me in the morning at home 9.30,but now i have go appointment through for pre-op in morning. so i am seeing her first at hospita at 9.00l before my pre-op and 10.15.

spoke to her on phone this morning to agree this new arrangement, and just felt like she was rushing me on the phone, as if she was trying to get off the phone. i have felt a bit like this on thursday when i spoke to her. when i came off phone, (mobile) before i even said anything my husband who could her conversation with me, said she always sounds as if she wants to rush off! i don’t know if its how she speaks, cos she does talk really fast. my husband she even talks over me on ocassion.

i feel so vulnerable and a lost what to do. i said would speaking to her for an hour be long enough, she said it was normally for patients. i asked if i would be seeing the doctor again before my op, she said no unless i felt i needed to (felt as if i wasn’t normal asking about these things wanting to speak to more people about it all).

she said she would speak with me again later if i felt i needed to after tomorrow. there is another BCN but i haven’t been introducer to her. i asked if i was able to speak to the other one as well if i was unable to get hold of her (she me her card last week with contact numbers and she seems hard to get hold of).

i don’t know whether to ring macmillan helpline or this helpline or what. i don’t think i like this BCN, i feel like just another number.

any comments/support/advice would be appreciated. i am 39 and cant believe i am having to deal with this. my husband is best in the world so that is good. i havent been to work since last week since tests, i have told boss will be off a while with op but thats it, nobody at work knows anything i have said i don’t want them knowing at present. my mum and dad know, but thats it.

please help. from sheffield/barnsley area btw.

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Hi tommyticklemouse

Welcome to the forums. I know that you will find lots of support through these forums but in the meantime, if you need to talk why not call our free helpline on 0808 800 6000. You will be able to talk through all your concerns and questions with our trained specialist staff and wont be rushed either.

with best wishes
Poppy

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Tommyticklemouse
There are some really helpful people on these forums and the BCC helpline,you should consider speaking to someone,it’s always better to talk than bottling it up.I have a really good supportive BCN team of three,all of whom find the time to discuss anything with me .I was initially told a lumpectomy would be sufficient but after a second mmamogram ,then a CT scan ,a mastectomy was suggested.This disease never seems routine or common to a number of people .There is always different treatments and different reactions by individuals.There is no reason why you should feel rushed by anyone and if you do,then tell someone,meanwhile take as long as you need to get your head round the options.My treatment and the changes in options all seemed to happen so quickly before I’d even got my head round the fact that I had cancer but at no time did I feel unable to discuss it with anyone of the team from the BCN to the surgeon himself.I’d be happy to respond if you want to Private message me or do contact the helpline.
Good Luck
Carole

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hi thank you so much for your message.

what was your dx and what treatment have you had/having.

thanks for offer to message you, i may well take you on this if thats ok.

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Hi TTM
I’m almost at my 1 year anniversary but very much remember what I felt like then, very similar to you. But my situation, had more than one and on both sides, made my recommendation a bilateral mastectomy. I read lots and decided I’d rather go with lumpectomies, so a bit different from you. But it is such an individual decision. And because of my symptoms - one doc said ‘more complicated than serious’ it took 3 months before I had surgery. This timescale made me a bit anxious at the beginning but I eased up a bit. If you’re unsure about what surgery to have don’t let anybody rush you. If you’re sure about wanting a mastectomy then make sure they understand your feelings about this.

I also felt a bit like you about the BCN’s, I never had just one, I think I had 4 in total over the treatment, and never felt I had that one-to-one relationship that I think its supposed to be. It may be my perception, but I also felt they were just too busy.

Great you’ve got a good husband, mine too has been fab through this. You’re a good bit younger than me, its really tough to be only 39.

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hi sheil, thanks for your message.

will see what BCN says tomorrow and makes anything a little clearer. My husband is the best. he isn’t really happy with this BCN either, he says its as if just on a conveyabelt (sorry for spelling never had to spell that word before ha ha). i think he may be something tomorrow when we see her about it, i hope it goes ok.

did you have any other treatment after op or taking anything now.?

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Hi TTM
my initial dx was probably a v.small tumour could get away with lumpectomy & rads but at the clinics review meeting which they have weekly to discuss all new cases,the radiologist thought she’d seen more and wanted a second mammogram and ultrasound ,which I had a week later.She took a needle biopsy at the same time and when I went for the results was told there were about 3foci.It was a lobular cancer which is like a spider and has legs that spread out ,not a good analysiswhen it’s inside your body but I understood from that what they meant.I went for a CT scan to make sure it was only in the one area(breast)and after that it was recommended that I have a mastectomy on the right.I had a tissue expander inserted at the same time to allow for an implant later on.It turned out to be three foci 50mm,20mm and 1mm.The surgeon said they got it all and there was nothing in the lymph nodes but to be on the safe side he wanted me to have chemo and rads and hormone blockers for five years.The oncologist last week on the other hand doesn’t think the chemo is necessary because I had good margins so The two specialists have to talk this week and decide which way to go.The mastectomy has been ok so far no recovery problems to speak of ,just in a quandry at the moment until I know which way they are going to proceed.Had the op at the end of Sept.Hope this is of some use but you need to ask as much as you need to as often as you need to ,to feel comfortable about the way forward

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hi caroleog

thanks for further info. changed BCN today to other one after a little chat about things. she seemed nice and went slow with me. she said not to worry about that i have swapped BCN’s and it wasn’t a problem. speaking with her again thursday to see if have got any further with my decision. she says i have right up until day of op if i want, but thinks it would be better to decide before then so i can prepare myself for the op knowing what i will be having.

keep in touch with your progress.

TTM x

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Hi TTM
well went for another fill into my expander today.Half way there apparently but how can they possibly get any more in there,boy is it tight.
Well still no further with future treatment except the consultants had spoken together.The oncologist was confident that because there was no glands affected that the mastectomy had got it all and chemo and rads wasn’t needed.
I told the surgeon that I’d like to punch the air but I don’t want it coming back in a few years because they hadn’t given me chemo this time.He’s promised to speak with his own oncologist to make sure they all agree with the way forward so I still have to wait a little longer to know for sure
Hope you feeling OK and coming to terms with things
Carole

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hi carole,

glad your expander treatment went well! i don’t think i am brave enough for anything like that.

it sounds frustrating about the difference on opinions regarding treatments. this is one of the things that i am dreading and worrying about. its seems these ONCs and surgeons seems to sometimes have difference of opinions about it. i am definately going question every little thing. i want to make sure that i get whats needed. i have read many threads on here where they have said about this sort of problem. make sure you are happy with the consensus.

i am getting on a lot better with this BCN for sure, i hope it continues. i have my op this week and am getting scared now. i want it other with but am dreading it also. i hope i can come home same day, they have said there is a good chance i will - cross fingers. i can’t stand the smell of hospitals. got some button down PJ’s other day and got one of these cropped top sporty type bras thingys. went to M&S and found post surgical section took one in to try on and assistant took me in changing room and then asked if i had bought one of these before - i said no - so she said wait a minute i will get some other lady to come and help/chat about whats best to get. i had all on to stop myself crying. anyway lady came and did help me giving me some advice as to what to get to start with - ie stretchy crop top thing as appose to proper surgical bra to start with. i still can’t believe this is really happening. i keep waking up at stupid oclock and then can’t get to sleep. BCN said to go to GP for sumat but i am going to leave it a while first. she said not sleeping tablets but something for anxiety or sumat which might relax me. what are your thoughts on this?

take care
TTM x

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Hi TTM
I didn’t have a problem sleeping.On the odd occasion ,I just took two paracetamol and went out like a light.The fear of whats coming is far worse than the actual thing,believe me,whether it’s a lumpectomy or mastectomy.Mine ,the latter, there was no pain ater the op,I was just numb ,still am in places.The hardest was finding a comfy way to sleep but I used a pillow under my bad arm and that helped.I went down for op at 4pm friday afternoon and was out of the hospital before lunch on the saturday.Hospitals arn’t the best places to get sleep.Came home with the drain in and district nurses came out for a few days before it was removed .No pain with that either just a quick cough and it was out.
Try and stay calm and in control.You’ll be fine really .I’ll be thinking about you .Anything else you want to know just ask
Best wishes
Carole

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thanks carole - wish i could sleep - still up at this time! went out for a walk round block and some fresh air about 10.30. its doing my head in, hopefully might feel a bit better once op is over with. i should be having op during the morning so with any luck they might let me home. BCN says theres a fair chance, think they like you to get up and about and off home asap by the sounds. suits me.
your
try and get off to bed now i think and get some sleep hopefully. thanks for help and support.

keep in touch with your progress. take care.

TTM

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Hi TTM
hope you got some sleep last night after all.I got a bit more info from my BCN today re the different thinking between Oncologist and surgeon.My biggest foci of 5cms had a gap of 3mm good tissue in it so Surgeon sees it as 1foci ,onc from path report sees it as 2 foci, a 3cms and 2cms ( I think 4cms is the marker for chemo).Also good clearance from margins .It’s on agenda for this afternoons discussion meeting so she’ll phone me later.
I’ll let you know .thinking about you for tomorrow.Stay calm
Carole

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managed some sleep but not a good nights sleep.

a bit more progress/info for you today then which is good. hopefully things will get moving soon with the rest of your treatment. i hate all this one doc thinks this, the other thinks that.

i am fairly calm at minute, will be flapping though in about 5 minutes. i keep looking at clock thinking not long now.

anyway BCN rang me first thing this at 8.15 because i hadn’t got back to her yesterday as she was worried. i had a bad day though and just got even more confused than ever. anyway she asked if i would have another session this morning with her so i did. i have agreed to have a lumpectomy on the basis that i can come back to them and say its not working out for me and i want a MX. she said this was ok to do last week in fact she suggested it to me, (i didn’t realise this was possible, i just thought i would have missed the boat and then they wouldn’t do one because i wouldn’t actually need one if know what i mean!!) the consultant surgeon even came in for a while to speak with me and things and confirm that this was option for me to do. i think they are worried i would regret it doing it straight away without going for lumpectomy first. anyway thats the state of play.

she has also suggested to have some counselling after op at some point which she thinks will be very beneficial for me. i have said i will try it, so she has referred me today just to get the ball rolling.

do you know yet if any what tablets medication you will be taking???

i don’t know yet. but i am thinking tamoxifen may be on cards. she has asked me about having children (as i haven’t yet - have been married since i was 21 but just never really known if we wanted them really). anyway she mentioned this to me last week and said that they wouldn’t want me to get pregnant whilst on medications which would obviously be for a long while and by end of it would be significantly less chance of getting pregnant at 44/45 - in fact not sure if they actually affect fertility anyway. even though we haven’t thought whether we definately wanted kids, it seems weird that this will have decided it for us really. i think she was just checking if this would be a potential problem.

thankyou so much for thinking about me tomorrow. sorry for waffling on above!

TTM x

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AH sweetheart, I feel for you. I had my lumpectomy the day before my 40th birthday on the 5th september. I too kept it quiet and only dad, brother and OH knew until finally I had to tell work.
I wasnt given the option for a masectomy, my lump was 1.4cm grade 3 and the 4 nodes that they took out were clear. On Monday i have no 4 of 6 sessions of chemo and then 4 weeks of radiotherapy and then have to decide whther to take tamoxifen for 5 years.
I have been angry for soo long and not wanted to talk to anyone, the only way i could communicate with friends without biting their heads off was by email.But this site has been a god send and a comfort and i come on it regularly.
Im not sure what to say to make you feel better because i know at your stage i couldnt take it all in and didnt want to talk to anyone but if you want to ask me anything than i will answer as honestly as i can
Nina xx.

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hi teecass/nina

thank you for your message. thats s**t the day before your 40th. how is your chemo going, is it really tough? are you deciding about tamoxifen because of the pregnancy thing too (hope that is not too nosy don’t answer that if you don’t want to).

To be honest they should said lumpectomy to me, it was me that mentioned MX and they said if i felt that strongly they would do this, but obviously wanted me to think about this properly. well been thinking ever since, not knowing whats best thing for me.

i dont know about other treatment until after op. apart from radiotherapy.

i still haven’t told people about it - i don’t know if thats a bad thing to do or what. i can’t face it yet not until i got op done, and i know what else is happening. i can’t cope telling people repeating everything over and over. couple of bosses know at work but thats it and they have told people not ask why i am off and they are unable to discuss it. i have 2 close work colleagues/friends at work - and they have been told that i will contact them when i want to. one has since texted and just said she hopes i am ok and just wanted to send her love - she obviously hasn’t a clue why i am off. mind you i think they have said i will be off for a fews weeks - which they know it will be longer but they have just said that for now.

haven’t spoken to any friends outside of work.

how are you feeling now a few months on since your op and your initial DX.

TTM xx

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Aagh! It’s got to be a quicky as batts about to die on the laptop.

It’s the chemo that can cause infertility. I don’t think Tamoxifen does - but it’s the 5 year delay that increases the risk of infertility the older you are…

I was 33 when diagnosed in May - we’d just started trying for children. Had to have chemo immediately and have just had my op and started radiotherapy and Tamoxifen.

Will reply more tomorrow when I get some more battery power. It’s beeping at me now!!

xx

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hi sandytoes

thanks for that. any other info would be good. i have heard of zoladax as well (not sure if thats correct spelling). do they put people on that as well tamoxifen?. BCN mentioned it, but its all just maybe’s and possible’s at minute - she doesn’t know. she is just mentioning things that might be coming up, may be to get me thinking about it now so its not a surprise maybe. i think she was initially just finding out my feelings concerning children because she knows we haven’t had them.

hows the tamoxifen going? seen lots of comments about it and side effects. hope you are ok following your op and radiotherapy is going ok.

take care xx

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Morning TTM (love the name, by the way!)

WARNING! I AM NOT A DOCTOR SO PLEASE CHECK EVERYTHING WITH YOUR ONCY!

So,the biggest threats to your fertility are chemo and then the delay caused by Tamoxifen. Some oncs believe that using Zoladex during chemo shuts down and therefore protects the ovaries - others don’t. Mine didn’t want to use Zoladex as if any cells had escaped and were in the ovaries they wouldn’t have got zapped by the chemo. Zoladex in conjunction with Tamoxifen is again to shut down the ovaries - but this time not to “protect” them as Tamoxifen doesn’t attack the ovaries, but to reduce the level of oestrogen in your body. Again, some oncs believe this - others don’t. Mine doesn’t - but I got a second opinion who does, so I’m going to ask for it anyway to see if I can stand the side effects.

It is good that your nurse has made you consider the child thing - and I would think about it long and hard as it might be possible to freeze eggs or use Zoladex if you think you might want children. One of my friends has just decided at 43 that she wants children - all through her 30s she was adament that she didn’t want them!! It’s alot to take in and work out your feelings, but initial reactions might be telling. Mine was pure panic at the thought of maybe not being able to have children…more than my health at the beginning (I know - stupid, as of course I can’t have children if I don’t beat this etc).

I’ve found Tamoxifen fine so far. Not sure how long it takes for the side effects to kick in. I do get achey joints in the morning or when I sit still for a long time - kind of like an old granny - but that’s it so far. Just bear in mind with this forum that it’s mainly the people who are suffering and have ailments and need to offload that are on here - you don’t get threads entitled “I’m crusing along - no SEs for me”! I also had a relatively easy time during chemo - but felt bad mentioning it on here as lots of other people were suffering so much. However, I have since met other young women my age who also sailed through and never felt the need for the forums. I was expecting awful things having read the forums in advance - and was pleasantly surprised!

Don’t tell everyone until you’re ready to - as you’ll then have to talk about it and news will spread!! And then will follow well-wishing advice (most of it rubbish as from people who’ve never been through it) and tales of “you’ll be fine, my hairdresser/neighbour etc had it and is FINE”. Poop to that. Doesn’t help when you’re feeling worried.

Hopefully you’ll have a better picture of the plan once you see your onc. But think carefully about the children thing - as it’s unfortunately now not a simple case of coasting along and maybe you’ll change your mind next week/month/year…

x

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hi sandytoes (the name is from our first cat we had, his name was thomas but he had us wrapped round his little paw and walked round like lord of the manor - so we used to refer to him as SIR thomas tickle mouse! very silly i know!)

thanks for that inform anyway. much appreciated. can i ask when you about zoladax and tamox combo - about some oncs recommending and some not - so you sought a second opinion. was this second opinion from another onc at same hospital or a completely different hospital? i just wondered cos i have seen a couple of people mention before about asked other oncs opinions on things before deciding things.

my husband mentioned to BCN at time of discussion about freezing eggs cos he read on here about people doing it. but she didn’t seem very positive on this - i can’t remember what she said exactly, but as if its a difficult process to go through and/or not very successful?

thats a good point about people on here with their side effects etc and people who don’t have any probs don’t come on at all or don’t like mentioning it.

i will think carefully about the children thing.

x