Thinking I might want a bilateral MX instead?

[Katherine62]

Yay for Annie! XXXXX

[Brewster]

So pleased Annie that you are all done with surgery, take it easy xx Me next Friday , bring it on !

Maggie, know exactly what you mean re typing and reading the forum and husbands.... I do exactly the same 😄😄😄😄

[Annie25]

Many thanks everyone. Have had a really good night - so pleased that surgery is done and at the very least a large chunk of the cancer is out. Have started a new thread 'lava lamp drains' on the surgery pages

[keepmumsane]

O good stuff Annie!  Xxx 

Hope you've had a decent sleep.  Hugs

Pahahaha Maghie ...a forum dedicated to boobs.. 😉

Yeah its such a valuable part of our lives now. xxxx

[maggie59]

Yes, I have just tried explaining it but although he nods he really doesn't understand. Men eh?

Sleep well Annie and give us an update about how you are getting on tomorrow.

Maggie x

[Annie25]

I know exactly what you mean about husbands and the forum!!!

[maggie59]

Hey Annie, so good to hear from you!!!

I have been thinking of you and wondering how you are getting on.

Glad you are OK and back home.

Make sure that you take it easy. As the scars heal things get stiffer

Try and have a good nights sleep and let us know how you are tomorrow.

My husband has just come in (with a glass of wine!!) and seen me typing away - I keep minimising the screen so he cant see what I am doing (he doesnt understand how important this forum is to us) and I'm sure he thinks I am on some sort of seedy internet site - how funny is that??? As if ladies eh???

Rest Annie and let us know how you are tomorrow.

Lots of gentle hugs.

Maggie x

[Annie25]

Just back from op - have been given (by hospital - made by volunteers I think) a long cross body shoulder bag for the drain- seems to work v well . Iphone charger useful plus all Maggie suggested esp the sherbet lemons. Only in one night. Had mxt and 2 lymph nodes out- results in 2 weeks. Good luck to all dec chemo ladies

[maggie59]

I had it taken out on the morning of the day I went home so went home drain free!!

Was in hospital two nights (had my op at 2.30 on Monday - back on ward at 5) stayed that night, had first drain taken out the following day, stayed the second night then had the other one taken out before I went home late morning.

Having said that it might have been a tad early because I had some leakage (hope you havent just eaten dinner girls???) and had to go back to hospital the next day to have the dressing changed.

It didnt take long for them to be removed and they just stick an absorbent dressing over the wound.

Mx

[Katherine62]

who took out the second drain maggie? how did you manage that at home?

[maggie59]

Hey good news - surgery then chemo seems the way to go ladies

Things I really appreciated:

Phone

Charger

Ipad

Kindle

Bottle of squash for the revolting water - found this essential

Sweeties - sherbet lemons - YAY

Front fastening PJs - didnt really need them to be front fastening though as I could lift my arm, probably better than I can now.

Notebook and pen - but only because I had to take some work calls!!

Took wet wipes but didnt use them as was able to have a shower the day after the op - good this glue they use.

Drains - I had two. First one came out day after op and second one day I went home ie second day after op. Not a problem going to the loo or having a shower with them, just unhooked from the bed and carried them in. Kept forgetting they were attached to me though and walking off with them trailing 🙂 Think you can get bags to carry them in but they couldnt find any and I didnt really need one.

Funny isnt it how times change and technology seems to top the list 🙂

Great progress ladies - not long now!

Mx

[Katherine62]

looks like we'll be January buddies then!

XXXXXXXX

[Brewster]

Hi Katherine

Just to say my treatment plan changed twice and am now surgery first and then chemo so in same position. My surgery is next Friday and I can't wait !! Then chemo after Christmas. They have said that I should only be in a day or two, .. Am taking earplugs, sleep mask, melatonin and trusty ipad 😄

[Katherine62]

Oh I was going to ask, any tips on what you took in to hosp or what you wish you had?

And how did you manage drain etc afterwards? Does a DNurse come out?

[Katherine62]

yes They did Maggie, they're really comfy. I shall give up hoisting the old bangers up and let them enjoy some nice soft cotton support from now on.

Well done on the CT scan... we are all moving forward.

bug hug jxx

[maggie59]

Good that you are happy with their treatment plan Jane - at least they listened to your concerns and must have felt that this is the best course of action for you. As you say, go with the flow....

Demented elf!!! Conjours up all sorts of pictures! My 85 year old Mum and 20 year old son are coming with me on Monday to choose a wig - we will have such a laugh. Well you have to don't you?!

CT scan done - much easier than MRI and never even felt the canula go in - very gentle radiologist. She looked at my vein and said 'has someone been in here recently' - yeah just a bit!!! Fingers crossed for results.

Did your bras arrive Jane and do they fit OK? Very glam eh?? I plan to use them as sports bras when this is over.

[Katherine62]

WELL!

Back to plan A, op on Monday.... some of the results aren't back, they've had a meeting and done their talking and decided surgery first, chemo later.

I'm okay about this. If that's what my team thinks then I'm guided by them.


Just had my v long thick blonde hair chopped off. I look like a demented elf.

But that's okay too. today ladies i am going with the flow.

XXXXXXXXXXX

[Weeannie1]

Hi jane,

I'm a bit claustrophobic, so got some diazepam to take just before my MRI from my GP. Made it much easier and I didn't panic at all. Only thing is that you can't drive yourself to or from the hospital, but OH was coming with me anyway, so that wasn't a problem for me. Hope you get the same relief if you choose that route. Take care, Ann x x

[Caroline60]

Take some eye masks with you. thats how i got through this. 

[maggie59]

Being on your front isn't as bad because you can't see that you are enclosed and you are looking down through a hole in the table! It is very noisy though and the table vibrates a bit. Took me a while to realise that though, I thought it was me shaking!
Good move re the sedation though, it will just make the whole experience easier.

[Katherine62]

yes, they are going to dangle the offending boob through a hole and MRI it so they can get exact measurements.

I am v claustrophobic so i may ask for some sedative before going into the machine.

XX jane

[maggie59]

Hi Jane
Seems like a sensible solution and one I would have considered myself had I been given the option.
No one realised that my lump was 55mm! Does that mean you won't have to have the nodes removed?
Hope you are feeling better now and well done to you for going back and looking at alternatives.
Glamorous consultant sounds as though she should have your best interests in mind!
We will probably be starting chemo around the same time. Do you have to have any more scans first?
Mx

[Katherine62]

thank you Sam... having a bit of a wobble and a good big cry at the moment.

love to all xxx

[SamLee]

Sounds like you have got a very sensible consultant, as you will read from my post yesterday, that is exactly what I had.  My lump initially was 50mm and by the time I had finished chemo it had shrunk to just scar tissue so that made removing it incredidly easy.  I them had rads as insurance.

As the consultant has said the chemo will also mop up any stray cells anywhere else and also give you a few months breathing space without having to deal with the whole treatment plan and decisions in one go.

You can then make a more informed decision/choice after the chemo has done what it is designed to do.

[Weeannie1]

No, not got a date for surgery yet, still at the planning stage. Went through all my treatment earlier this year, but just can't settle with having had a lumpectomy, so have been passed on to plastic surgeons to have a bilateral MX. Prob won't happen for a couple of months, since mine will be classed elective. Now to make the decision of what type of reconstruction to go for. Am definitely swaying toward a DIEP flap, but am gleaning lots of info from the lovely ladies on this site.

Oops! Appear to have replied to a thread that's disappeared. Ann x x x

[Katherine62]

Thanks Ann, How are you getting on with it all? Good day or bad day?

[Weeannie1]

That sounds a positive plan. You then get the best of both worlds. Good luck with the chemo and I hope all your side effects (if you get any) are minimal. Take care, Ann x x x

[Katherine62]

Right.

Seen my very glamourous and impressive consultant today about my 11mm lump and lymph node involvement.

She understands that once this is all over, I might well want a bilat MX. So what she suggests is:

start chemo now, for 6 months, moniter tumour to check it's shrinking, and everything on course, or alter chemo if nec, then BMX with rebuild at the same time if I still want it. Thant would mean no rax.

I'm thinking this might be the way forward for me. The advantage is... start chemo sooner to get cracking on any possible cancer bits, she says it will take care of roving cells AND anything coming out of lymphs.

She was absolutely positive that chemo then op is just as good as op then chemo.


Any thoughts?

jane

[Katherine62]

Thanks all. I will report back tomorrow!

XXX

[Weeannie1]

That sounds a very good idea. Hope all goes well and you get all the info you need to make an informed choice. Best wishes, Ann x x

[maggie59]

Excellent news!
Let us know how you get on...
Mx

[Brewster]

Good x hope it becomes clearer for you

[Katherine62]

Well good, just had phone call...........I'm going in to discuss things with my consultant tomorrow.

XX

[Katherine62]

Thanks everyone.

I know that she feels she can remove the lump with LWE but to me that still leaves a lot of breast tissue that has been close to the cancer and then the radio would happen AFTER the chemo.

I don't know (who does?) but I am really thinking I would be relieved to have the whole breast gone. I guess it is all down to what makes us feel most confident.

XXX

[SamLee]

Don't know if this will help/ease your mind etc, but when I was dx in 2010 the lump was huge.  I had chemo to shrink first but was told I would need mx as wouldn't be able to shrink enough.  However it did shrink and then my surgeon said I would only need lumpectomy.  I was very cynical because at that point had got my head round a mx and having recon etc.

My husband actually asked the surgeon outright - "what would you recommend if it was your wife as we want the best long term survival" and he said he would recommend lumpectomy followed by radiotherapy as it was the same survival outcome.

I think we are all geared to think along the lines of chop it out as quick as possible so it can't come back, but that isn't always the case and can sometimes cause more trouble. 

As my surgeon said to me, you wouldn't have all your teeth pulled out just because one needed attention and he could have made money out of my treatment as I had all my treatment privately.

Remember also that once you have had a dx of BC you will always be monitored closely so if anything does appear later down the line it should be picked up very early indeed.

[Brewster]

Hi Katherine

I am not quite in same position. Diagnosed TNBC but because I can't have radiotherapy then they have advised mastectomy and am going for bilateral due to high risk of BC. Developing in left side. My personal view on this is to get rid of as much tissue as possible is the best way to minimise recurrence. Although recurrence can still happen..... I have grade 3 and so am not prepared to take any chances at all. It's entirely a personal thing but I was in no doubt at all about my surgery which is planned for 28 November.
Whatever you decide will be right for you

Best of luck and keep us posted

Sam xxx

[Katherine62]

Thanks all

Just thinking I will never trust my breasts again and would be happier to stick some socks down a bra! I would be happy to wait for recon, I just feel very strongly, at the monent, that I want them both OFF. BUT I don't want to wait any longer for my surgery than I have to. I shall just have to wait and see what my Surgeon says.......... assuming she ever calls me back.

Jane xx

[valdermossa]

hi there

im also at the crossroads to go for the bilateral mx , although at the end of the day its up to , nobody else.

i decided before my results i have high grade dcis , but dont want the risk of it comeing back.

my surgeon understood , so if yours insists you dont need be refered to a different doctor.

makes me mad , its such a very dificult time for all of us, we dont need the added pressure of someone telling us something else.

if you dont get the answers you want , theres a complaint help line through to the nhs, i was worried earlier this year and they were wonderful , and i got my hernia asap.

so hang in there you have to stick to whats best for you in the long run, and most of all give you the best possible chance that this wont come back

hope that helps.

feel free to get in touch anytime, us girlies need to stick together

regards deborah x

[maggie59]

Gosh Jane, that is a difficult one!
To be honest it never occurred to me and I felt happy to go along with what the consultant suggested as he was so confident that it was the right action.
I am hoping that I will be very closely monitored from now on ( although having said that my lump didn't show up clearly on the mammogram or ultrasound) and will be on hormone therapy which presumably stops it forming in the other breast?
Good luck with your decision...
Mx

[Weeannie1]

Hi Katherine,

I had a WLE last December for a grade 2 ILC. My mum had breast cancer way back in the 80s and underwent a radical mastectomy. She was the first person I knew who had survived cancer. My aunt (mums sister) had died 6 years previously of bc. My sister & I were given annual mammograms from the age of 35 because, although we don't carry the BRACA genes, they suspect a genetic involvement (a number of other female relatives on mums side have also died/had bc). On diagnosis I was desperate for a mastectomy, but was told that a WLE was being offered and that, because I wanted reconstruction at the same time, I might have to wait 8 weeks or longer for a mastectomy. Not happy with having this disease in me for one minute longer than I had to, I opted for the WLE. On the day of the op, I was still in a quandary as to whether I wanted to go ahead, but did in the end. To cut a long story short, I ended up having to wait 6 weeks from my original op to have another op because they didn't get clear margins. Was totally gutted that I hadn't stuck to my guns with my original choice. This has affected me to the point that I am now waiting for an elective bilateral mastectomy. If I could rewind a year, I would def go for the mastectomy. This is only my experience, and you may go ahead with the WLE and not feel the way I did, but my gut instinct is that if you're considering mastectomy now, you'd be best to go for it. All the best with whatever choice you make. Sending big hugs, Ann x x x

[Katherine62]

Morning all

Booked in for lumpectomy and node clearance but I really am beginning to thing i'd rather go for a bilateral MX instead. They only just found (ie nearly missed) my 1cm lump which is already grade3 and there's some in a lymph node they biopsied. I'm thinking, perhaps there's another one they have missed which will hit Grade 3 before they find it? If i had the healthy breast off now, at least I'd keep the nodes, and I'd be perfectly happy to wait for reconstruction, if any, until after chemo.

I've left a message for my surgeon to call me (although she was adamant that a Lumpectomy was all that was needed) and hope she'll listen.

Has anyone else had these thoughts prior to first surgery?

love to all
jane xxx