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mastectomy

Jill1998
Community Champion

Re: mastectomy

Good grief Tess you and your hubby sound like you have had your fair share of calamity this year!I have not met with the surgeon yet but have been told I am having lumpectomy and sentinel node removed to begin with followed by who knows what as yet ,not had full report back from biopsy yet,just know grade 2 invasive cancer 15 mm tumour so far.
Tess1950
Member

Re: mastectomy

Hi Jill, Most inconsiderate of someone to put a barrel in a car park Woman Wink I am going up the city Monday and will definitely be on the look out in the car park.  Mind you even before I was diagnosed I turned into the car park and hit a wooden post.  So many people did it they have taken it down.  If a car was going out the same time as one was going in it was impossible to go in. My brain didn't work that day for sure.  I am doing too much but find it helps me cope.  This morning I sat down with a coffee and slept until my hubby came in at lunchtime. I didn't even get to have the coffee. Woman Sad Is your op on 24th of this month? If you don't mind me asking what are you having done? I read that you say when you are diagnosed it doesn't seem real.  Even after all this time I still have times when I cannot believe it.  Maybe I am slow on the uptake.  I was diagnosed when having the ultrasound scan before the biopsy was done. The person who was doing the utrasound scan went and fetched the Professor.  It didn't take rocket science to figure out what was going on so I stupidly said have you found something.  I always say the wrong things. Woman Wink My friend always tells me not to say anything as I always get it wrong.  Like a new neighbours baby.  I said isn't he lovely to be frostily informed he was a she.  In my defence the baby was dressed in navy.  My hubby always said you should never assume but I always do.  Have you got a Big C Centre in your area?  We have and I went in and they are so kind and helpful.  They offer so much like massage, make up sessions or just a peaceful place to sit and relax.  If you want you can talk.  It is based at my local hospital and after going round the car park umpteen times to try and park it is well worth the hassle.  My hubby now does the parking and will either leave me there or he is welcome to come in to. I can hear gentle snoring coming from the lounge.  My husband is 'watching' the tennis.  Since he broke his hip (silly man fell through a roof) he has been going into work but cannot do a full day and crashes out when he gets home.  We are a right pair.  It is amazing just how much this forum helps keep me focused and to know I am not the only one feeling as I do. Keep in touch.  Thinking of you.

Love Tess

xxxx

Jill1998
Community Champion

Re: mastectomy

I know what you mean about the privacy issue I think it's about having control about who knows about your very personal business, let's face it you don't have control over much else in the midst of this.Its like people who hardly know you knowing your husband is having an affair..
Jill1998
Community Champion

Re: mastectomy

Don't sit in the pond Tess you may get an ASBO!
Tess1950
Member

Re: mastectomy

Hi Maria, I switched off computer about 12 but did not go to bed.  Wish I had left it on then I could have talked to you. Did not pick Daniel up last night as he works Thursday and Friday until 5am and I draw the line at that and he has taxi.  Mind you I still didn't go to bed but kept pottering about. That is what I call it. Hope you are calmer today. I am beginning to think that being strong and in control is connected with cancer.  It is really weird but all of us look after everyone else and are in control. I sat down this morning with a coffee and my hubby came home at lunch or I would still be asleep.  I get so mad with myself and think I could have been doing so much.  Really it is our bodies letting us know we have to listen. Just done the dog walk and managed to get back to the car before the rain.  As I was having a hot flush I just stood there enjoying the cool rain. I did put my dog in the car first. Smiley Wink What I find hard is when someone asks how I am and they know which you can tell by the way they are. This just happened with a dog walker that I know and he said a friend of mine told him. I don't want everyone to know as I get embarrassed which doesn't make sense.  I think sympathy is hard to handle. It's stopped raining, and heat and hot flushes definitely don't mix.  I could strip off and sit in the pond.  That would be different and a sight for sore eyes.Woman Wink I had to smile when you said you were going to do short days working from home.  It sounds so like me.  We don't know what a short day is even if it hit us in the face.  We are really good at justifying why we have to do something. Keep in touch.  Thinking of you.

Love Tess

xxxx

Jill1998
Community Champion

Re: mastectomy

Thanks Jilly.I had a really calm day yesterday and I thought great things are getting better but today I feel rubbish and scared.guess that's the nature of it.
jillybee
Member

Re: mastectomy

Reading this thread ....oh,have I been there,and back.
One of my really low points was,what I call my freezer moment,when I was getting something out of the freezer,then struggled to get stuff back in,and getting the shelf in straight....well,I just cried and cried,stood there with all the contents round me.My husband heard me,was in the shed,by the way,came out and took over.Poured me a Gin and Tonic,which,as soon a his back was turned,I topped it up....HOWEVER,I THROUGH IT,YOU ALL WILL.......GENTLE HUGS
PS have walked of restaurant in tears,been quite sharp with some people when they try and advice me,cry at adverts,cried in the middle of a Saturday morning,feeling very low,but rung the BCC and they were marvellous........but,still maintained my sense of humour.......😀😀😀😀
Jill1998
Community Champion

Re: mastectomy

Hi Tess,hope you and I don't live anywhere near each other as the roads will be pretty dangerous at the moment!Yesterday I backed into a metal barrel, who put that in a car park.....If I see someone asleep at the traffic lights!You sound like you are doing far too much to me ,trying to carry on as normal is fine but not if it means you're are exhausted all the time.I have just realised that I am asking too much of myself and going to finish work sooner before my op and look after myself ,we are all so used to looking after others aren't we.Have a rest you and let other people look after you for a change.
Maria_B
Member

Re: mastectomy

Yes, results on 17th.

I am signed off until Tuesday, so I'm going to stay off until then. I just didn't want to miss this meeting. Stupid really.

Also I cancelled a work trip next week so I have an empty diary and I'm going to work short days from home. I'm tired tonight but a bit wired and can't sleep. Are you picking your son up later?
Tess1950
Member

Re: mastectomy

Hi Maria, You sound just like me.  We are ok and can cope and are brave and try and carry on as normal. Yes I do beat myself up as I am always in control but not this time. The hard part is realising that you cannot be in control and have to listen to your body.  Still getting my head round that one. Do hope you are taking your own advice and not continuing to go into work until you feel well enough. I have never been this tired before.  Fell asleep tonight with my head on the arm of the sofa.  Very stiff when I woke and my hubby said you have been asleep and I said no I was just thinking.  What a load of twaddle.  We went out to dinner tonight and I kept nodding off. I am like one of those nodding dogs. Fell asleep twice (that I remember) on top table at my son's wedding.  Luckily he nudged me awake. When I have the chemo I will have to master the art of falling asleep standing up.  At the moment if I stand up I can stay awake but I think after chemo there will be no hope. Good job I don't mind spiders as one has just got on top of the computer screen.  I am a softy and put them outside.  I probably squash them with the kitchen roll before they get there. Smiley Wink Tomorrow is another day closer to getting better so no room to be negative.  I now have to get in into my thick skull  that as well as laughing I have to cry and that it is a normal reaction. Always was slow on the uptake. Telling family and friends was really hard as you have to be strong to lessen their pain. I don't know who said it's a funny old world but it certainly is.  I have tried to think of some nipple jokes but can't sorry.  I'm known as boobie and when I have chemo I will be boobie baldilocks. You say you get your results mid June?  I am rooting for you and sending good thoughts.  My chemo starts on the 19th. Have to have blood test next week to see if everything is ok for it to go ahead.  Keep in touch.

Love Tess

xxxx 

Maria_B
Member

Re: mastectomy

Tess, I'm sorry you're having a bad time. We are all scared, distracted, and you are all not alone in crappy driving.

I went back to work yesterday for an afternoon, overnight dinner and meeting all day today. Too much, too quickly just 8 days post 2nd surgery. We're all great at giving advice to others about taking care of yourself, being kind to yourself, not doing too much too soon. Harder to put into practice for yourself. You know what you have to do, it's just hard giving yourself permission to just be.... not on top form.

Tess, don't beat yourself up for having bad days. We all do and it's okay to be angry, scared, crazy... Tomorrow we'll go back to "brave" face.
Tess1950
Member

Re: mastectomy

Thank you I will ring tomorrow.
Tess
Tess1950
Member

Re: mastectomy

Hi Jill, Had a lousy morning but gave myself a kick up the butt and being positive now.  You made me smile about scrapes on your car. My driving is not brilliant at the moment and keep forgetting to look and indicate when I change lanes. I have been lucky so far. Thursday and Friday my son doesn't finish work until 5am so he gets a taxi.  I picked him up at 2am this morning I was up and 6.45.  I don't think I will be able to do it when I have chemo and have told him.  I shouldn't be doing it now but we have to try and do what we normally do but I realise I can't as I am so tired.  I fell asleep at traffic lights taking him to work on tuesday. He woke me up and I shot off with bleeping noise and then realised handbrake was still on. I did feel silly but I do realise I could cause an accident. I have my sensible head on now.  That doesn't happen very often. I am the scatty one whose cat Simba is now trying to help me type. He will annoy me until I sit down so he can sit on my lap. I spoke to my mum tonight and she is still coughing up her Muesili. Bless her. How are you? You have had a lot of operations and gone through a lot.  I do feel for you. Take care and thanks, your reply really helped.

Love Tess

xxxx

Sam_BCC
Member

Re: mastectomy

Hi Tess

 

As well as the support you receive here you might find it helpful to talk things through with a member of staff on the BCC helpline.  Here you can share yout thoughts, feelings and concerns with some one who will offer you a listening ear as well as emotional support and practical information.  The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator  

Jill1998
Community Champion

Re: mastectomy

Hi Tess,1am in the morning is the worst time of day all alone with your thoughts.I hope you are feeling more positive today.It is understandable that you have times when you feel like s***t ,you are going through a horrible traumatic time physically and mentally.Think I should avoid driving for a while, scraped the car twice this week so far,mind distracted.Have smeared muck into the cracks to avoid being found out by other half....
Tess1950
Member

Re: mastectomy

Hi Everyone, Why is it that one minute I am all positive and telling everyone I am fine and doing good. Then like now I feel c..p and just want to cry like a baby.  This is not me and it is scary.  How can you have so much support yet feel so alone.  I am sure some people think it is catching.  Time seems to stand still at every stage as it's always a waiting game. Family and friends have said go for the cold cap when I start my chemo.  I had made up my mind not to have it but because of what they said I agreed.  I feel I was pressurised. Does anyone have any experience of the cold cap?  All I have heard is how unpleasant it is. My oncology nurse told me about the cold cap and then promptly booked me a wig appointment.  He did say you can tell after the first treatment if it is going to work.  Has anyone had chemo where the nurse sits with you and slowly puts the drugs in manually?  I thought it would go through a drip.  Wish I knew where my head is at the moment as I'm all over the place.  I can't tell anyone but on here just how much I am hurting and what this is doing to my head. I am really frightened and have done some reading on my cancer types and it can come back.  This is such an awful path to follow  but I have to do it. I felt so down when I picked my son up from work the other night I could have rammed the car into a brick wall.  Now I know that is stupid but I just wanted to get the hurt out. Am I the only one that feels like this sometimes and I am going mad.  Please tell me how to get rid of feeling like this as it really scares me.  I can cope with anything that happens to anyone else and I am always there for them.  When something like this happens to me I am at a loss on what to do.  Everyone says I look fab and how strong and brave but they never see what is on the inside. Sorry to be a pain but definitely going through a bad patch and don't know how to handle it.

Love Tess

xxxx  

Tess1950
Member

Re: mastectomy

Hi Jill, you have had so much to cope with my heart goes out to you. I will be thinking of you reference the CT Scan. Hopefully surgery will follow quickly so you don't go through the waiting nightmare.  I start my chemo on 15th June and had chosen to try the cold cap.  I have very long hair and it does seem trivial but I don't want to lose it but with the type of chemo drugs I am on I probably will.  Did you feel vulnerable when you lost your hair?  I think it is harder to cope with emotionally as everyone knows you are having cancer treatment. It certainly is a roller coaster of a ride but like the roller coaster it will stop and we will all be okay. Sending you hugs.

Take care.

Tess

xxxx

lavendersblue
Member

Re: mastectomy

Hi Tess , thank you for your lovely reply . My problem is really that my present cancer is angiosarcoma and not breast cancer . I had breast cancer in 2008 , with chemo , rads and 5 years of Arimidex , but the rads treatment caused a cancer of my blood vessels , angiosarcoma . This was diagnosed on Christmas Eve 2014 , not the best pressie ever ...followed by my radical mastectomy in Jan 2015 , as only treatment seems to be surgery. Sadly after 4 months it has returned and how !! So now another mastectomy and further surgery to my scar tissue ... am so gutted !!
When do you start your chemo ? I am sure you will cope , I found it was ' do-able ' and I coped better than I thought I would ...I was terrified of being sick for 6 months , but I was not sick once ...they were brilliant with the meds to control it . I did lose my hair , but had the most amazing curls when it grew back LOL !! Almost made up for the being bald ...well almost ! I hated my wig , so wrapped scarves around my head into wonderful turbans with knots and brooches . It was how I coped .
Will let you know how things go tomorrow and if I get a date for my op !!
Hugs,
Jill xx

Tess1950
Member

Re: mastectomy

Hi Jill, so sorry to hear what has been happening to you I can understand how petrified you must be.  Waiting is the worst and the uncertainty. Time seems to stand still  I feel so much for you. My friend's mum had a very aggressive form of cancer and was told by the Consultant that she had one hell of a fight on her hands. She had chemo first to shrink the cancer and then a double mastectomy.  She managed to get every infection going. She then had radiotherapy, injections and is now on tablets.  She is 74 and she made it.  She told me you have to be prepared to give up a year of your life and you will get through it.  It is horrible and she told me you will cry but you will also laugh and you will get to the other end. I looked at the type of cancer she had and it is very aggressive but she made it and looks fabulous now.  My cancer is more aggressive than they thought and the combination I have is rare.  I told the Consultant I like to be different but you can't say I am so scared and frightened I might not make it.  He treated my friends mum and he told me he would make me better and I have great faith in that. I will not let this horrid thing in my body beat me.  It has no right to be there and I will do whatever it takes to get rid of it.  I do wonder if they should have done a double mastectomy then, but the chemo should kill anything that is left. I am very brave and put on a good show but you have to have an outlet to express your true feelings. My hubby is fantastic I have named him Pingu after he broke his hip, I don't tell him everything as he is probably more scared than me but won't admit it. We lost a friend to cancer.  When I went for my results my friend drove us and when I was called in my husband froze.  My friend is the one whose mum had cancer and she followed me in. My friend is very supportive as her mum and sister have been through it but talking to fellow comrades really, really helps and you feel you are not alone.  We can relate to each other and understand that's what makes it so good.  We can also make jokes that other people would never understand but we all have a common bond.  My hubby's new name for me if and when my hair falls out is cooti deriving for bald as a coot. That bit will be hard as my hair is very long so will need lots of humour. Hair loss does seem trivial but I wonder if we focus on the things that we can recitfy by getting the cold cap or a wig. We do have some control but only in small areas. Maybe that is why we focus on such things. Hair loss is not such a big deal compared to everything else but I thinking it's the end of the world.  Silly really.  I hope you understand what I mean.

I feel for you so much and send you lots of big hugs.  Please contact me again.  Do let me know how you get on tomorrow and when you have your op. I will think of you and send good vibes your way.

Take care and take one little step at a time and you will get there.

Love Tess

xxxx

lavendersblue
Member

Re: mastectomy

Hopeyou don't mind me joining your thread , I had my first mastectomy in Jan this year , and am still sufferinfg from a haemotoma caused by the removal of my drain . Had it drained once , but it has re-filled and is back to being uncomfortable again ....
Infortunately my recent biopsies show that my angiosarcoma has returned in my scar tissue , and my other breast so now waiting for second mastectomy . Could be this week or next . It is the uncertainty that is so stressful .... I am terrified .....and that is made worse because I don't have a certain date for my op !! I got a letter saying it was on 4th , but I need CT scan first , and that is only tomorrow 3rd June .....so op probably postponed until the 11th ..... but don't know for certain .
Everyone says ' How brave and cheerful you are ' , when really inside I am a quivering jelly of nerves and terror , like you say it really is Hobson's Choice , I feel I must carry on as normally as possible for the sake of my poor husband , who has been wonderful . But it really is hard ....especially as I am not even sure that this second mastectomy will rid me of my cancer ....it has returned within 4 months so I have a very aggressive form . It is only on this wonderful forum that I can really express how terrified I am ...so thank you all for being here .
Hugs,
Jill xx

Tess1950
Member

Re: mastectomy

Hi Maria, non of us are brave but everyone thinks we are.  We have to do that to protect those we love but inside we are really scared sometimes angry and sometimes we pretend it's not happening to us.  It is being able to say how we really feel to each other that I believe keeps us going.  No we don't have a choice.  My hubby said you don't have to have chemo but I don't really think he had thought it through bless him. He just didn't want to see me suffer anymore but there is no alternative.  I will do whatever it takes to get better not because I am brave but like you it is hobsons choice.  We are in the same boat so we do understand which helps me a lot. I tend to joke and mess about alot if I didn't do that I would go mad. Sometimes though I wish I could wake up but it isn't going to happen.  I will get better and so will you but yes it is very hard to put on what people say is a brave face. My son had told quite a few people at his wedding and people were so kind I just couldn't handle it.  When I left with hubby I got a round of applause.  Have you ever seen a rabbit run in a long dress.  That was me and I kept tripping over it. That would have made a good have you been framed clip. I always wear long dresses but I kept tripping up in this one.  Still can't work out why as cannot drink on my medication. Perhaps I thought I had had a drink.  Smiley Wink You may think I keep funny hours.  I am waiting for my son to text me when he finishes work. I then pick him up.  I am mad as I get up at 6.30.  Or I should say hubby wakes me with a drink and keeps talking until I come round. Hope you are okay. Let me know how you are? Thinking of you.

Love Tess

xxxx

Maria_B
Member

Re: mastectomy

Tess, I will be sure to let you know.

Just thinking about what JillyBee said about being "brave". My husband keeps saying let me buy you a present for being brave, and I'm like a, I don't want something to remind me of having surgery (I've got the scars for that ) and b, I'm not being brave Last time I blubbed like a six-year old when they said he couldn't wait with me....

Do people think we're brave because most of the time we just want to carry on as normal? Or because we don't want to upset the people we love by showing them when we're scared?

Brave sort of implies you have a choice, and basically it is "hobsons choice" . It's like we're stuck on a train and we wait to find out where the next stop is going to be, and hope we get to our chosen destination and can get off the damned thing.

Sorry about this. I'll try and think up some nipple jokes for tomorrow x
Tess1950
Member

Re: mastectomy

Hi Maria, I thought I had replied to you but don't think I did.  My memory is going or gone.  The tiredness is awful.  At my sons wedding on Saturday he had to nudge me twice as I fell asleep eating. It is so frustrating and embarrassing.  They say the chemo will make me tired so I will probably fall asleep standing up.  I read the paper standing up so I don't fall asleep.  It's called a coping mechanism. I have to wait until 15th June for my first chemo so like you I am playing a waiting game.  That I find is the hard bit.  Before time used to fly by but waiting for certain things to happen and it seems forever. I look at it if time is going slower I will have more time to do things.  That is if I stand up. Smiley Wink I will be thinking of you and wishing you well in your results.  Let me know how you get on? Take care.

Love Tess

xxxx

Tess1950
Member

Re: mastectomy

Hi Jiilybee, Thank you for your reply.  You sound very strong and brave with a good sense of humour.  I explained to Ali about my mum and she won't change but there is always hope.  She did make me laugh because she said she coughed so much she broke her heart.  I laughed after I had come off the phone but she does believe that is what happened.  If I try and explain she wouldn't listen.  Bit like the Muesili. I think even when you are okay the breast team will always there for you so don't worry.  That is what I was told even after you are given the all clear and you still need to talk they would be there. It is comforting to know that and it does help.  Also talking to all you brave, funny strong and lovely ladies really helps me.  I feel normal again not that I ever was. Take care and let me know how you are getting on.

Love Tess

xxxx 

Tess1950
Member

Re: mastectomy

Hi Alison, I am so so pleased and happy for you that you do not have to have anymore treatment. Three cheers HIP HIP HURRAY! You have to celebrate.  Having cancer does make you appreciate everything much more and not take anything for granted. You shouldn't feel guilty as you have suffered enough.  I will come out of this fighting fit  as the world isn't going to get rid of me for a long time yet as I have so much to do. My mum has always been a loner even from a child.  She has a heart of gold but won't let anyone get close to her.  She has had so many offers of help from people she barely knew.  They even visited her in hospital.  She then panicked and was rude to them as she prefers to be on her own now my Dad has died. I am the complete opposite of her and think I take after my Dad.  I think he loved her so much he adapted to her way of life which to me is alien. I accept how she is and will respect her wishes but she is so so wrong but I realise there is nothing I can do.  I ring every night and go up every week to 10 days.  When we saw her Sunday it was hard as my hubby is like a penguin (I have named him Pingu) and I am still sore and have limited movement from the mastectomy.  We managed between us to drive there and back but it was hard and we were really glad to be home. I still keep saying she needs a doctor maybe one day she will forget herself and say yes.  There is always hope. You take care of yourself I couldn't be more pleased for you.

Love Tess

xxxx

jillybee
Member

Re: mastectomy

Tess,your mum sounds as if she may have a degree of depression....but as you say,doesn't want to see a doctor.To be honest,she probably would not want your news on top of coughing and bringing up Muesili.....😀Ali,understand how you feel,when you get the all clear you feel a bit flat,as who is going to look after you now?everyone says you must be relieved etc....in fact,you feel like rubbish....pop the boob on,ensuring it doesn't rise to your chest,fall through the bra or get lost.....mine ended up in a bed in the garden,got caught up with the sheets in the washing.
I am still plodding along......just the breast care team are just so wonderful I dread it when I am told I don't have to go back.....have had so many set backs,lost count.However,have fab friends and family....and so much to look forward to....as you lot do.Love this forum...take care,gentle hugs.Someone mentioned having a thread suggesting the good things that come out of having BC.....I can name a few.....despite the crap times....☺️☺️☺️
Ali1962
Member

Re: mastectomy

Hi Tess,

 

Thanks for your message. I hope you are feeling OK today.

 

I got the best news this afternoon - no need for chemo. Although the tumour was HER+ the oncologist said it was too small for chemo to be worthwhile. So that is my treatment over. The relief is amazing (I've been blubbing on and off since I heard) but also a twinge of guilt for all the lovely ladies on here who haven't had such good news.

 

When I was diagnosed I found telling my mum the hardest part - she's nearly 80 and very active but she has lost 2 close friends to cancer over the years, both at around the age I am now. But she has been fantastic - supportive and helpful without letting me know how worried she's been (although I can tell). It must be so hard for you coping with your mum when she doesn't want help.

 

I've become a virtual recluse since I was diagnosed - most of my social life revolves round my business (I'm self employed) so it's been pretty lonely, but hubby has been brilliant. Now I'll have to slap on the fake boob and face the world again!

 

I hope your chemo isn't too hard and that you come out the other side, fit, well and cancer free. I'll be following your progress.

Love, Alison

 

Tess1950
Member

Re: mastectomy

Hi Jillybee, Thank you for your reply. It helps that others understand.  You must be so strong to have had 15 ops.  You must also have a good sense of humour to get you through.  I was the one that cared for others and I never ever thought it would happen to me.  I was a carer and for some bizarre reason thought I was invincible. I have degenerative back problems and am in pain but I can handle that and didn't let it stop me doing things even though sometimes I shouldn't. My mum had pneumonia over the christmas period and was in hospital for about six weeks.  She has always been active and very independent.  She has always said that if she can't look after herself that is the end as she will not let anybody else do it.  If she is not up to making a drink you don't get one.   My daughter travelled 100 miles to see her and that is what happened.  She won't use her inhaler and her breathing is bad.  She is also coughing all the time. I do have to laugh though because she is the only person that coughs up muslei and not mucus no matter how many times I tell her it's mucus. She also has blocked tear ducts which they can't treat and that is occurring most days now so she can't see. She doesn't mix and the only one she will allow to do things is me and I'm 100 miles away.  I cannot get the doctor without her permission and I said I would and was told don't you dare I will not let him in. If she was stronger I would tell her but she is so poorly that she has no idea anything is wrong.  My hubby has broken hip and she can see that and she finds that hard. I think I have to accept that there is nothing I can do but be there whenever I can as you can't help someone who won't help themselves. How are you doing now if you don't mind me asking.  Thinking of you.

Love Tess

xxxx 

jillybee
Member

Re: mastectomy

Tess...oh this does resonate with me....not the wedding but people's reactions.Told I am brave really gets to me,and also being told to rest.....well,just cry....I know my body..an ex nurse,and have had,to date 15 lots of surgery related to breast cancer......looooooong story.
All I can say,just carry on loving your mum,if you want to tell her,do....she may well know anyway,mums pick up things.How would you feel if it was your daughter.....just a thought.
Go with the flow,eat chocolate,and take care....you will get through it.☺️
Maria_B
Member

Re: mastectomy

Hi Tess,

The wedding sounded good. My aunt is 91 - I'm her closest family and she's always saying she wants to go... It's hard really.

Op went okay I guess. No results till mid-June Breast looks horrible. I'm more tired than last time.

WLE is sometimes called a lumpectomy or breast conserving surgery. They try and cut the cancer out, with a margin of healthy tissue around it. If there's cancer right at the edge of what they cut out, then they will either re-excise to try and get clear margins, or you have a mastectomy.

Good luck with what comes next x
Tess1950
Member

Re: mastectomy

Hi Den,

Just thought I would get in touch to see how you are getting on with physio and massage? Is the pain easing with the treatment? I do think it is hard as we or I don't know what to expect so don't know if it is normal or not. Women more so than men just put up with pain and get on with it.  That is probably what you did as you thought it was normal.  I think I am making sense. Do let me know how you are?

Take care

Tess

xxxx 

Tess1950
Member

Re: mastectomy

Hi Maria,

Many thanks on your good wishes.  How did your op go? How are you feeling? Have you had any results from your op yet? Sorry it's like 20 questions.  I have got another one.  You said you were going to give the WLE another shot.  What's that? I am not into all these technical terms as I am a beginner but I starting to learn.  I sent Ali a reply with my results.  Still taking it all in.  It is real but it helps doing other things and putting it to the back of my mind or the brain does overtime.  My poor little brain can't handle that. I do try and make a joke out of everything as it is a good way to cope. Thinking of you

Love Tess

xxxx

Tess1950
Member

Re: mastectomy

Hi Ali, how are you coping? Is your next appointment Tuesday? I have been thinking of you. Let me know how you get on? I saw the Consultant on Wednesday and the cancer is more aggressive than they thought but he assured me he would get me better.  With the 2 types of cancer they found it is unusual to be HER2 Positive.  I told him I like to be different.  I start chemo on the 15th with a cold cap but still not sure if I am doing the right thing by going the cold cap route.  I do love my long hair but is it being vain in wanting to keep it?  It does seem trivial compared to getting better.  If I had elected not to have the cold cap I could have started treatment sooner. On Saturday I decided that I would have the treatment without the cold cap and my appointment came through the same day so now don't know what to do.  My son got married yesterday and he had told quite a few people and I found that very very hard.  They were so kind but I couldn't handle it. The Toastmaster was following me around and really looking after me.  At the moment I fall asleep at the drop of a hat and having the meal my son had to give me a nudge as I nodded off a couple of times.  It is so embarrasing.  We left early and everyone gave me a round of applause.  I was just so emotional and found it so hard.  I know people are kind but I know it sounds awful but I don't want them to know.  I feel so vulnerable.  I went to see my 94 yr old mum today who lives 100 miles away and she does not know.  I can't tell her as she is not well and has given up and hopes she doesn't wake up in the morning.  She will not see a doctor and without her permission I cannot get her a doctor. I know she is very old but life is still worth living and you can't give up.  I so wanted to tell her but felt that the shock would be too much. I just wanted her to know that life is worth fighting for whatever your age and you should never give up on anything. Nothing is impossible if you really want something it will happen. I couldn't have children but I have  a wonderful stepdaughter and she is the daughter I never had and we are very close. We apopted two boys and we are a very close family.  To me nothing is impossible. My son has just put a tie on our labrador so she can have her photo taken. She looks so funny but is so gentle you can do anything with her. It's good to laugh.  You take care.  Thinking of you.

Love Tess

xxxx   

Lucy_BCC
Member

Re: mastectomy

Hi Tess

I am posting a link to LCIS information and the 'Understanding your pathology report' booklet from BCC hope it helps:

http://www.breastcancercare.org.uk/upload/pdf/lcis_jun_06_0.pdf

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/understanding-your-patholog...

Our helpliners are on hand to talk things through with you on 0808 800 6000 weekdays 9-5 and Sat 10-2 so do feel free to call


Best wishes
Lucy BCC

Maria_B
Member

Re: mastectomy

Tess, Hope your appointment today brings some clarity.

Ali, good news on the clear margins

Good luck to both of you on the next stage in your journey
Tess1950
Member

Re: mastectomy

Hi Ali, I got all my results at once.  I have IN-SITU CARCINOMA: Present, DCIS AND LCIS Grade High.  Still don't understand it all and can't find out what LCIS is.  That was 27mm.  The other one was 37mm Invasive + DCIS. I also had Vascular Invasion Present together with Perineural invasion. I am also HER2 Positive.  It is very complicated.  I have been trying to make sense of it on the net but sometimes it can be frightening but I wanted a basic understanding so I could get my head round it.  I do know that I had two types of cancer.  I had to be greedy. Today I have been up and down like a yo yo but have to wait until 4pm tomorrow.  Hopefully the Consultant will then explain in pigeon english so I can understand all of it.HER2 are present in about 1 of 5 breast cancers and have too much of a growth-promoting protein called HER2. Tumours with increased levels of HER" are referred to as HER2 Positive and have too many copies of the HER2 gene, Like you my nodes were clear which is a relief.  Did you get a copy of your report? I asked for a copy and have learnt a little from what I have read.  They do say sometimes a little knowledge is a bad thing and it is when you have a down mood.  It is hard for you to wait another week to see what the outcome will be.  I feel for you. Time normally flies by but when waiting for results it just goes so unbelievably slow. Tomorrow morning to relax I am taking my dog on the beach.  That is my chill place. Literally most of the time and I dress up like an eskimo.

Hope this information helps.  I'm rooting for you and hope time does go quick.

Take Care,

Love Tess

xxxx

Ali1962
Member

Re: mastectomy

Hi Tess,

 

Well, back from my results appointment and it's mixed news. They found a 3.5mm invasive bit amongst all the DCIS. Clear margins and no nodes, thank goodness.

 

Now have to wait for a further test (HER, I think) and for the oncology team to decide whether to recommend chemotherapy or not. So another week's wait - I shall go mad!

 

I hope you are doing OK. Thinking of you.

 

Ali

Tess1950
Member

Re: mastectomy

Hi Ali, I too felt like you do and I was and still am swollen from mastectomy.  I only had 4 nodes out did you have all your nodes out? The GP put me on antibiotics and said infection but the Consultant said swelling fine not infected as it was not red.  Swelling will go down but I am still swollen. My friend teaches exercises and has been showing me the correct way to do them and that has helped me a lot. I am also a total control freak and have to organise everyone and it is very difficult to change.  My hubby sometimes says I can do this myself you know or you don't have to protect me as I can look after myself but I still do it. My friends say it's because I care about people and I do and you are probably the same.  You are a giver not a taker.  I do think that this is what is so difficult as we are not in control and like the cancer these feeling are alien to us.  It seems to me like being on a rollercoaster that is out of control and you go from one stage to the other not knowing what is going to happen.  You go Tuesday for your results and I am rooting (think that's the right word brain doesn't operate very well these days) for you. I went to give my dog a treat and got a poo bag out to give her.  At least it made me laugh. I go Wednesday to find out when all my treatments start and I must admit that one minute I am positive, the next scared, worried just all the wrong sort of emotions.  I hide it to try and protect family and friends as they think I am doing really well.  I tell my hubby and one special friend whose family members have gone through it.  I actually tell her more than my hubby as I am in my protective mode. Thinking of you and understanding what you are going through.

Tess

xxxx

Ali1962
Member

Re: mastectomy

Hi Tess, 

 

Thanks for the message.  Getting very wobbly as results day looms. Trying to keep positive but also very frustrated that I'm not healing faster. Still swollen and sore from the Mx and not up to doing much - which leaves lots of time for Dark Thoughts. 

 

As a total control freak this is difficult for me! But I will get through it.......Smiley Happy

 

Ali

FizzB
Member

Re: mastectomy

Doing half marathon for Breast Cancer Care in October - yet another good reason for not having my nipples reconstructed!! 😉
jillybee
Member

Re: mastectomy

Good for you,running the half marathon.I ran the BUPA 10k in London last year,for our local BC unit......went past Breast cancer charity,and in passing told them I had prostheses ...therefore wouldn't get nipple rub......😊😊😊
Maria_B
Member

Re: mastectomy

And my next roller coaster will be at Disneyland
Maria_B
Member

Re: mastectomy

Hi Tess and FizzB. Thank you both for being here. Just started using the stern-wash and antibiotic nose ointment which just shoves it in your face that another op is coming. (Tuesday)

When this bit is "over" I'm going to run a half marathon for Breast Cancer Care. In pink. In a VERY supportive sports bra.
FizzB
Member

Re: mastectomy

Hi Tess, I think you're right; I'm sure it's what the phrase "roller coaster of emotion" was made for! Health wise I'm all ok thank you. I was diagnosed with DCIS last November, bilateral mx & LD recon in January & now pretty much back to "normal". I have been very lucky with my cancer journey. I still find myself given to ups and down though. Only yesterday I was sobbing one minute when I found out I'm not able to donate blood anymore and then raging round the house when my mum told me she was surprised because I "didn't really have cancer". I work with teenage girls and my usual mantra with them is "this too shall pass" ... I've been using it a lot on myself as well!!! And thankfully, it does. Failing that, a good walk & a large gin!!
Tess1950
Member

Re: mastectomy

Hi Lisa, many thanks for your reply.  Yes feelings come and go but they do pass.  One minute I am angry then sad then eventually I am back to my normal dizzy self. The emotions at times are very strong and it even feels unreal.  I suppose that is a coping mechanism pretending it's not happening. How are you?  If you don't mind me asking what have you had or having done?

Tess

xxxx

Tess1950
Member

Re: mastectomy

Hi Ali, Have been thinking of you and wondering how you are?  Not too long now for results.  It is hard but try and stay positive.  I hope you manage to do something nice this weekend if you feel up to it.  Good luck for Tuesday. Let me know how you get on?

Tess

xxxx

FizzB
Member

Re: mastectomy

Tess, I would say it is normal to feel however you are feeling. It's a unique & horrid time. This will pass. I promise.
Lisa
Tess1950
Member

Re: mastectomy

Hi everyone, do you ever have a down day when you feel so angry and alone and hurt so much. I don't understand why I feel this way as all my family and friends are being so supportive.  At this moment I just want to get in the car and drive as far away as possible.  Trouble is I think I am running away from myself.  I am usually so positive and in control.  Please let me know that it is normal whatever that is to feel like this.

Tess

Tess1950
Member

Re: mastectomy

Hi Guiliana, no I did not have reconstruction.  I am a smoker unfortunately (trying to stop) and that was not an option until I give up.  I do not want a reconstruction at the moment but if I stop smoking and change my mind I can have one,  Smoking delays the healing process. One of the reasons for no reconstruction was that I am 64 and have never had big breasts anyway.  My hubby loves me whatever and no one can tell at the minute what I have had done.  Probably may guess when I have the chemo. What did you have done?  How are you now?

Tess

xxxx

Ali1962
Member

Re: mastectomy

I walked down - and quite a long way too as my hospital is a right mish mash of old and new buildings.

 

I had dressing gown and slippers over hospital gown and the nurse who walked down with me took them back to the ward for me.