I don't really know how I feel

After a WLE and Axillary node clearance on 20th May - results showed axilla all clear - great but no clear, margin tumor 1.8cm
Re-exicion on 10th June - got results on friday plenty of dcis and another tumor 1 cm.
Guess what - mastectomy on 15th July, elected for reconstruction next year in case oconlogist chanes mind and I will have to have radiotherapy.
Negative hormone receptors so will have 5 months of chemo and no tamoxifan for 5 years.
Even my consultant says things not going my way.
I just dont know how I feel keepin strong for family. Kept original diagnosis quiet until 8th May as daughter taking final exam for degree. Glad i did as she graduated last Thursday with a 2.1 B. Ed so proud of her.
Hope this makes sense as new to this.
Husband not taking it well - case of head in sand and everything will be ok
Anyone similar,

Sorry to hear that the original op was not sufficient to get it all. I can’t really offer anything with regards to advice or words of wisdom - I had WLE that got the lot and was slightly hormone receptive so it was rads and tamoxifen for me.

Sorry to hear that your husband is not coping well with the news - again I can’t offer any advice on how to handle that one cos I had mine removed 18 years ago (husband not tumor).

I can assure you tho that you will get loads of support for the ladies on this site - some of them will have had similar situations to yourself.

Well done to your daughter btw - you are right to be proud of her.

Hi
Sorry to hear you are having a hard time with the surgery. I had a WLE with full axillary clearance and got full clearance on the lump too so was very relieved. Hopefully you will get the “thank goodness its gone” feeling soon.

I didn’t tell my two about the surgery till a few days before cos they were taking AS’s and A2’s at the time [last year] so understand where you are coming from on that one and I named my OH MR Positive cos all he ever said was “your going to be fine, it will be fine”.

He has said a few things since its been “over” so it was definately ticking away in his head I just don’t think he could bring himself to say it out loud at the time.

As far as keeping strong for the family, I think we just do it automatically. I went to a relaxation group at my local BigC centre and the girl leading it said something about this being “me” time and I didn’t have to worry about anyone else for the next 30 minutes, I completely dissolved and cried and cried which was very therapuetic. i only ever cried badly in front of OH once, bless him, I totally lost it and he just sat there and didn’t say a word and when I finally shut up he said “I’ll put the kettle on”. Thanks goodness for cups of tea.

You are having a long haul and my heart goes out to you, stay strong, you will get there in the end.

AJxxx

Hi lizziemum…another lizzie here…

Slightly different dx to you, 2 cm tumour with DCIS, had a sample node removal of 8 lymph nodes, 2 positive, so back for total axillary removal, another one + so glad I did it.

You have been a brilliant Mum, shielding your daughter from your problem, and what a fantastic result, a 2.1. Rest on your laurels.

Hubbies…mine is a scientist, not one to engage his mouth before his brain, but found it difficult to express himself during my treatments. .Although he was 75 yrs when I was dx, and disabled, he took me to every consultation, tests, surgeries and follow ups - my gentle giant at 6’3".

He is an only child, parents also, so has no conception of wider families…and indeed, says I am his moon and stars…bit difficult to live up to , but know where is coming from. Your husband must be devastated and can’t find the words to say…men are wired differently, I believe, to us women. Give him some slack? He sounds wonderfu and will be there for you.

It is a long journey, but I feel you have the strength to get through it and come out the over side, as I have done, 5 yrs down the road now.
Come back here whenever you feel you need some technical information (I found bc like a foreign language at first), and most importantly, emotional support. We have all been there and know how it feels.

Take care,
Liz.

Hi AJ and lilac blushes
Thanx for replying so quickly. Its nice to know others are going through things.
Went back to work 2 weeks after first op and 2 days after 2nd but only for short time. Found it best way to cope.

Hi lizziecee
Even though he’s not coping well my hubby is with me all the way, taking me to all appointments. Whereas I have had the feeling all along that things wern’t ok he has felt every time that this is it, everything will be ok. I am asking him at meetings if he is ok…
Liz

Hi Liz.
I had a lump removed at the end of November but when I got the results a week later was told that I needed a mastectomy and was totally devastated. Was offered an operation two days later but just couldn’t get my head round that so into hospital on Dec 14th for a mastectomy and removal of sample of lymph nodes.
More results in Jan, all clear but due to only 1mm between the tumor margin and the chest wall I was offered 3 weeks of radio therapy then tamoxifen.
When all the tests started my youngest had just started uni and now at the end of treatment my eldest has just graduated also with a 2.1 but BSc going on to do a PGCE to become a Primary school teacher.
Congrats to your daughter - teaching is a great job to be in but then I am biased having done it for the last 30 years.
All the best as you progress through the various stages. Remember there is probably someone on here who is going through something similar to you or who was were you are now just a few months ago. There is plenty of support around, so keep on posting and reading.
Magsi

hi Liz,my tumour was hormone neg as well.Had 6mths of chemo and 25 rads as it had gone to my lymphnodes and there was a lot of vascular invasion. Its a scarey time but very doable.I’m nearly 5yrs down the line and feeling good!

lizzie…you are so strong… and feel you wioll cope. like me, feel we have to support our husbands…an oxymoron?
We are blessed in our suppportive partners. My much more intelligent husband than me, never opened his mouth at any of my consultantions…still can’t figure out why, but I am not a psychologist…He knows I am proactive about my health after some 38 yrs of Crohn’s.doesn’t care to discuss that disease either, but is always there for me, with a bucket and a bowl in times of flares. I could not ask for anything more;

Hugs in cyberspace.
liz

hi lizzie

sorry it’s such and emotional roller coster - changing goalposts is no fun at all - it can be quite a derailment - even if temporary

think you’ve just got to focus on the positives in your case …

  • the nodes were clear
  • they are getting the rest out on 15th July

so after the chemo and rads you should be fine

my OH doesn’t discusss it much either - he just can’t wait until “things are back to normal and I’m well again”. think eveyrne has their own way of coping

know it’s not easy
lots of love FizBix xxx
ps i am triple neg too - so have to have 4 x Epi and 4 x Tax and 6 weeks radio

Hi Everyone,
Thank you for your replies.
I think I was having a bad day when I wrote the above.
I have just had a meeting with my bcn and am ready to roll. She showed me what my prosthesis will look like and advised me the types of bras to buy for after the op. We has a nice long talk and everything seems to have fallen back into place.
My OH is going to see her tomorrow.
I am really proud of my daughter, but musn’t forget the other one (in case she reads this) she got a 2.2 last year in Accountancy and is also doing well. proud of them both. Also have a 13 year old son who appears to be coping well with everything ( he has a great guidance teacher at school who has being having chats with hime about me.

Again thanks for all your comments it made me feel better to have a moan just for myself.
Regards
Liz

Me again forgot to say that I found out today that I am negative for Her2 so that is more good news
Liz

Hi Lizzie

Sorry to hear you are having to go back for more surgery. I too had WLE with SNB on 6th june, as you, nodes are clear and apparently so is margin but they want to take more margin so another op on 14th july.
They havent said anything about hormone receptors, i dont see onc until september!!

I read this site daily but havent posted much cos really dont know how I feel.Its on my mind constantly but emotions dont seem to have kicked in, I,m not weepy at all, cried on way home when first told as I went on my own but havent since, keep thinking am odd cos I havent reacted the way everyone else is and this lack of emotion is scaring me!!!

Take care will be thinking about you.
Best wishes
Helen xx

Hi Helen
We are both in on the same day. My re-excision was done as a day case in at 8 out at 5pm.
I don’t seem to have reacted the same as others either perhaps it is a state of mind. I keep getting told that it will catch up with me but so far it hasn’t. Don’t worry you are not alone.
Good luck on 14th. I still don’t have a date for the onc but hopefully after this op.
Regards
Liz

Hi liz
thanks for that i was thinking it was just me!!!
I also get told it will hit me one day. both my son,s are leaving home in september which is when I see onc so am expecting lots of mixed emotions then, in some ways looking forward to it, less washing and ironing etc but will be strange having house just to myself!!!

Helen xx

Hi helen
Are your sons going to uni?
When my first daughter went I was miserable for short while
When second went year later I thought this is so peaceful - no junk lying around, washing up left, washing verywhere etc.
That was 4 years ago and my sons has taken over
You may find that you feel better with them not actually seeing how you feel, only hearing about it. I know ny daughters coped better over past few weeks when they were away from home.
Hope that makes sense to you.
I’m sure we will be fine…
Liz

Hi Liz

My eldest son (19) is going to preston uni and my youngest (16) is going to Army college in Harrogate.

I think it will be easier for them not being here when treatment starts, and as you say no junk, bedrooms will be tidy for a change lol.
Your daughters have done really well and sounds like your son as support at school through his guidance teacher, its good for them to talk about all this.

Hope it helped hubby to talk to bcn, sometimes think its harder on our families than us, cos while we having treatment and surgery were actually “doing” something about it while they feel useless cos they have to just stand by and wait (if that makes sense)

Helen xx

Hi Helen
Both your sons are going to busy in September at least you will have had your op and every thing will be decided by the time they go.
Yes thanks my hubby said he felt things made a lot more sense aftre seingthe bcn although he is still concerned about some things
Liz xx