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SURGERY AUGUST 2018

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Member

Re: SURGERY AUGUST 2018

It's good to hear from you Wombat Woo and I'm glad you are doing well.

You're absolutely right Karen, it has been a long road although probably longer for you than me as once I had had my surgery in August I didn't need any other treatment. I think the recovery time for a Diep is about the same as LD flap which is what I had and I still feel some discomfort even now after 3 months. It does improve, just very slowly. Don't try to do too much before you are able.

Sending hugs to you both x
Member

Re: SURGERY AUGUST 2018

Hi Linda

 

I'm still here (have swapped over to the Nov surgery thread mostly).  After my WLE and re-excision in August, I had my mastectomy and DIEP reconstruction on 21 Nov.  

 

I was hit really hard by the op, and had totally underestimated how ill and exhausted it would make me feel.  For the 5 days I was in hospital I felt like I'd made a terrible decision.  I'm home again now (have been for one week) and things are looking more positive.  I have a bit more energy, I've got my appetite back (partly at least) and I'm not in pain exactly, just discomfort.  I am almost walking 100% upright but my tummy feels very tight indeed.

 

But my wounds seem to be healing up nicely and the look of my foob is pretty good.  It's hard getting used to a boob without a nipple but in size and shape it's a pretty good match to my 'good' breast.  I haven't really looked at the scar on my tummy and new tummy button much as I find them hard to deal with, but that will come.

 

The hardest part is being reliant on other people for help.  After my previous ops I was able to do everything like normal within days, but with this one I've been told I can't do things like hoovering and laundry for the next 8 weeks.  It's been difficult to have people here doing things for me and I'm sort of looking forward to being left on my own for a bit to find my own speed/way of doing things.

 

It's been a really tough few months and I've still got to deal with the emotional side of things, plus wait for the path results from the op which I hope won't show anything unexpected.  But thigns will get better and i'm hoping that 2019 will bring the chance for me to return to some sort of normality.  

 

Glad to hear you're back at work Linda - hope you continue to recover and return to normal well too.  It's been a long road hasn't it?

 

Take care all 

Karen

Member

Re: SURGERY AUGUST 2018

Hi Linda
I am here though to be honest work seems to have taken over. I am doing well and beginning to feel the whirlwind has slowed a little Still getting tired easily but I guess it being wintee doesn’t help with that.
I too would really like to hear how everyone is getting on....
😘😘🤗🤗
Member

Re: SURGERY AUGUST 2018

Hi

 

Is there anyone still coming on the forum from the August Surgery thread?  I would love to know how you're all getting on.

 

I've been back at work for a month now, trying to get back to normal.  Please let me know if any of you are still out there.

 

Linda x

Member

Re: SURGERY AUGUST 2018

BR ... if you search the forum for the MonarchE trial there are other threads which mention it and there’s a link to the Macmillan community in one of them.

Hope your rads go well.

hugs xx

Member

Re: SURGERY AUGUST 2018

Hi Belmont Rose, I’m not surprised you are weary of treatment if you were diagnosed in December. I was diagnosed in March and have had chemo, surgery and currently doing rads with herceptin thrown in every 3 weeks and I have. Really had enough of treatment. The problem I find with rads is that you are there every day so it is a constant reminder of what you have been through.
I am curious how/why they say you have a 50% chance of it coming back. I’ve not heard of the trial so can’t offer up any advice there apart from do what you feel you can cope with.
Hope rads is going ok for you and that your seroma is healing. X
Member

Re: SURGERY AUGUST 2018

I've just come back from a meeting with my boss to discuss my return to work - I will be going back next week on a phased return!  I will be 10 weeks post op by then but I can't quite believe that it's time to go back already.  I do feel well enough to go back and I work in an office so I won't be doing anything too physical although I am expecting to get a bit of backache (I'm going to take my cushion with me).

 

Hope everyone else is healing well xxx

Member

Re: SURGERY AUGUST 2018

Hi all, good to see that you are beginning to think about ‘normal’ after 2-3 months... we are moving at such speed, ladies!

I am due to start radio this week, although as my foob is still suffering recurring seroma (feels like sleeping on a tennis ball!) and has definitely grown since they did the laser mapping, I won’t be surprised if it gets put off yet again... groan. 

Don't know about you but I am beginning to feel really weary of treatment now as I was diagnosed last December and have been going into Guys for sessions since early January. Hoping to be done with the main treatment by the end of this year, but am being considered for the MonarchE trial for abemaciclib as apparently my cancer’s more than 50% likely to return. Is anyone else considering this? Would be glad to see what you think about it...

Look after yourself, ladies - and keep cheerful. I couldn’t believe the sunshine today - and it’s nearly November ☀️☀️☀️!

Big hugs BRx

Member

Re: SURGERY AUGUST 2018

Hi Jane

Good to hear from you.  I'm glad you're trying to get back to normal and I know what you mean about not knowing what normal is.  At the minute I don't think I'll ever feel 100% normal - it is such a slow process.

 

I feel fine driving, albeit still with a cushion behind my back and I have to be careful when I'm turning sharply to the left.  I'm driving like I did when I was learning and wasn't allowed to cross my hands on the steering wheel!  I still feel like I have a really tight bra on even when I have nothing on.  Do you feel like that?  As for how I am emotionally, most of the time I feel OK but I do sometimes find myself wondering if I'm going to get it in my other breast as a lot of women on here seem to be on their second round.

 

It does seem to be all about appointments doesn't it, although as long as my nipple behaves itself I haven't got any further appointments now until March 2019!  I'm seeing my boss next week to discuss my phased return to work and I will probably go back the week after.  I'm pretty sure I will get some backache as I spend most of my day sat at a computer but I'm going to take my cushion with me.

 

Lots of hugs to you and everyone else on the August thread (you've all been very quiet recently, hopefully it's because you are all doing well) xxx

Member

Re: SURGERY AUGUST 2018

Hi Linda, sorry for the late reply, trying to establish my new normal! Not quite sure what that is!

Glad to hear you're doing well and driving again. Any issues with that or anything else? How is your foob and any scars? Are you ok emotionally?

 

I'm driving ok as long as I'm careful not to open any of my car doors with my affected arm (eg I often put my shopping in the passenger footwell). Sleeping is improving, with my Tendercush cushion I can, for part of the night, sleep on my left foob side but mostly sleep on my right boob side. Seroma in my back seems  fully healed following a steroid injection 2 weeks ago. Seeing my doctor in a couple of weeks regarding return to work, not sure if I'm ready yet as will be seeing a counsellor for some counselling/therapy beginning November - partly BC, partly some other things. Also stil having physiotherapy which is great, and will be also trying Pilates starting beginning November - having also fortnightly reflexology to help relieve my restless legs. It's all appointments, isn't it? Seeing my consultant next for my next checkup and hopefully will get the results on my HER2 and menopausal blood test. On Tamoxifen but that may change to a different tab depending on blood results, no side effects yet fortunately!

 

Quaggie - sorry to hear things are tough for you, big hugs to you, Linda and all the other ladies xx

Member

Re: SURGERY AUGUST 2018

Hi Quaggie- fingers crossed it is just an itch !!!!

Tears are healing and meltdowns make you feel better ....

🤗&😘
Member

Re: SURGERY AUGUST 2018

Hi all

 

Just thought I'd pop in and say hi.  Good to hear everyone is doing well.  

 

I'm still weighing up the options I have for reconstruction after mastectomy - everyone (my BCN, my new consultant and the plastics surgeon) are pushing me towards the DIEP which is scary but does seem like it might be the best in the long run.

 

I've had a couple of emotional meltdowns when the team warned me off going to stay with my brother (see my other thread about my DIEP decisions), plus I've now been referred to the gynae oncolog team urgently as an itchy lump ... ahem ... down below, worried my GP.  So that's fun.  Waiting for an appt there so I'm anxious I'm heading down a new cancer road of course.

 

Anyway, taking each day as it comes.  Not much other choice really.  

 

Hope everyone has a good week xxx

 

Member

Re: SURGERY AUGUST 2018

Just got back from the breast care clinic and my new nipple is healing nicely and I don't need to have a dressing on it anymore.  I am quite relieved as at one point I thought I might end up losing it altogether!  I am slowly getting back to normal after my surgery although my BCN said that I could still have some slight discomfort for up to a year!!

 

Jane - I am driving now and thinking about going back to work soon.  Please let me know how you are doing.

 

Hope everyone else is recovering well xx

Member

Re: SURGERY AUGUST 2018

Hello everyone 

Really good to see you are all making progress and grabbing the chance to get back into normsl, everyday activities. It’s been such glorious weather recently, it seems a shame to be indoors...

 

I spoke too soon 2 weeks ago about starting radiotherapy! IVe been 3 times to Guys since then for them to pump c200ml Sedona fluid out of my foob to try to stabilise it for radiotherapy, all of which is extremely boring and time consuming. Last week I even got as far as lying half dressed on the scanner before they decided no! I’m now 2.5 months post surgery (full Mx, implant and aux clearance - 11 of 20 lymph nodes infected) so am a  bit concerned at the delay - I understand they normally want to get cracking on rads within 3 months. Anyone else had a seroma get in the way of rads and have any suggestions for getting the fluid creation to stop?

 

I’m also taking Letrozole - a few night flushes for the first few days and then all fine.

 

Meanwhile, let’s love the sunshine - we went out for a 15 mile bike ride yesterday to soak up lots of vitamin D! Look after yourselves, ladies - and keep smiling🤗🤗🤗

BRxx

Member

Re: SURGERY AUGUST 2018

Hello everyone 

Really good to see you are all making progress and grabbing the chance to get back into normsl, everyday activities. It’s been such glorious weather recently, it seems a shame to be indoors...

 

I spoke too soon 2 weeks ago about starting radiotherapy! IVe been 3 times to Guys since then for them to pump c200ml Sedona fluid out of my foob to try to stabilise it for radiotherapy, all of which is extremely boring and time consuming. Last week I even got as far as lying half dressed on the scanner before they decided no! I’m now 2.5 months post surgery (full Mx, implant and aux clearance - 11 of 20 lymph nodes infected) so am a  bit concerned at the delay - I understand they normally want to get cracking on rads within 3 months. Anyone else had a seroma get in the way of rads and have any suggestions for getting the fluid creation to stop?

 

I’m also taking Letrozole - a few night flushes for the first few days and then all fine.

 

Meanwhile, let’s love the sunshine - we went out for a 15 mile bike ride yesterday to soak up lots of vitamin D! Look after yourselves, ladies - and keep smiling🤗🤗🤗

Member

Re: SURGERY AUGUST 2018

My new nipple has finally stopped bleeding and looks a lot better than it did on Tuesday, it is scabbing over nicely.  I think it  might be the antibiotics that did it.  My BCN put on another dressing and I have to go back next Friday for it to be checked out again.

 

Hope everyone is doing ok xx

Member

Re: SURGERY AUGUST 2018

Wombat - For me, I only need the cushion behind my left shoulder blade and down the left side of my back, where my dent and seroma are - my seatbelt when driving does not really rest of my foob. On the subject of seronma - it was drained AGAIN today (that's been done every week for the last 7 weeks!) and finally had a steriod injection to try to prevent any more fluid build up now that the wound under my foob on the scar has healed up (couldn't have steroids whilst on anti-biotics or not healed wound). Next surgeon appointment is not for 3 weeks - hurrah - apart from physio I may have a couple of medical appointment free weeks for the firfst time since May/June!!!!

 

Linda - I'm on Tamoxifen for 5 years, and still wiating for my HER2 results which will be yet another 2 weeks Smiley Sad  But surgeon is hopeful and optimistic that won't come to needing any other treatment such as chemo). Having a blood test tomorrow so the oncologist can check my menopausal state as that may suggest if to consider an AI like Anastrozole instead of Tamoxifen. I just need to hold out for another 5 weeks to be one year period free Smiley Happy

 

I was not asked about physio, was just visited by the physiotherapist on my 3rd day in hospital after my mx/recon and she told me I would see her 6 weeks after op - I'm glad she did - she's lovely and I must say the physio worked a treat last week, felt so "free" and "loose" at the weekend although a lot more "firm" and "tight" today - too much walking for retail therapy! Roll on tomorrow's physio. The daily exercises are helping too.

 

Also have booked myself in for reflexology next Monday, not through my insurance (as all other things are) but via a recommendation. I have other issues apart from my foob including restless leg syndrome so hoping reflexology might relieve that and/or my other issues.

 

Keep at it ladies xx

 

 

 

Member

Re: SURGERY AUGUST 2018

Hi Jane and Linda. When I started driving again I found a small cushion or a folded up scarf under the seatbelt next to my boob was really helpful at first.
🤗😘
Member

Re: SURGERY AUGUST 2018

It sounds like you're doing well Jane.  I think I will have to get myself in my car and have a go at driving.  I will also be taking a cushion with me for my back as this is what I've been doing when I've been in the passenger seat.  I'm sorry to hear that you have to start taking Tamoxifen - do you know how long you will have to take it?

 

I asked my consultant about physio yesterday and she said that they only refer people if they are struggling and she obviously didn't think I was.  I might look into it later on if I don't think I'm improving well enough because I can get it for free as I work for the NHS.

Member

Re: SURGERY AUGUST 2018

Linda - make sure that your BCN and/or consultant do the follow up on your weeping nipple. I'm sure you will. Hope it gets sorted soon. Other than that, how are you doing overall?

 

My first drive went well, round trip of 6 miles to the supermarket with OH. Put one of my tit pillows (which is quite a flat one but softly padded) behind my back to give a bit of relief to my dent and seroma area. Drove again yesterday alone but only 2 miles for my monthly manicure and was ok apart from forgetting to not be careful when I put my handbag in the front passenger footwell and felt as if my arm had wrenched.

 

Same again today, trip to the GP for monthly checkup due to some other issue I have - she was impressed with my new foob although concerned with my "healed wound" under my foob on the side which is a bit red and inflamed although I think it's where my bra band is and that's possible irritating it. Tomorrow I will see my consultant and have him review the healed wound, and hopefully will be my last seroma drain with then a steroid injection to stop the seroma. 

 

My GP also gave me my first prescription for Tamoxifen which I shall start taking tomorrow.

 

Hope everyone else is doing well.

Member

Re: SURGERY AUGUST 2018

Well my new nipple is still bleeding and weeping even though I've had a dressing on it for the last week.  My consultant didn't seem too concerned and didn't think it was infected but has given me some antibiotics just to be sure.  I'm back at hospital on Friday for a check up.

 

Hope everyone is recovering well!

 

Jane - how did you get on with your first drive?

Member

Re: SURGERY AUGUST 2018

Thanks Linda, and good to hear you're doing well but that the nipple is ok when you have your appointment. 

I was lucky with my nipple, it was spared as was most of my breast skin so I still have the blue dye from the SNB and my original moles from way back!

 

Totally agree with your statement: "The discomfort and tightness seems to get a bit better each day although I don't really notice unless I think back to a week before and realise that I am getting better."

 

It's still a long road though, there are still things that I can't or daren't do, such as open the kitchen drawer where the cutlery is, it's quite a heavy drawer, or lift anything too weighty. Even putting the laundry in the washing machine can tire me out some days but yes it's improving. I might stop the regular painkillers for a few days and see how it goes. Going for a short drive today, will let you know how I get on.

 

Physio was arranged for me, in fact the physio came to see me in hospital 2 days after my op, had a quick chat and arranged my first appt there and then! Maybe have a chat with your BCN and/or GP and see if one can be recommneded to you, that is on the NHS so won't cost?

 

Take care, have a good weekend xx

Member

Re: SURGERY AUGUST 2018

Good to hear from you Jane.  I was just thinking about you earlier as I knew you were getting our results yesterday.  It's good news that you don't need to have any treatment apart from the Tamoxifen.

 

I am doing ok thanks.  The discomfort and tightness seems to get a bit better each day although I don't really notice unless I think back to a week before and realise that I am getting better.  I'm not sure if my nipple is still bleeding as I had a dressing put on at the beginnng of the week and was told to keep it on until my next appointment which is on Tuesday.  I'm hoping it will be ok when my consultant takes the dressing off then.  I'll let you know.

 

It's good that you're seeing a physio.  Was this sorted out for you through the hospital or is it something that you have sorted out yourself?  I only ask because nobody has mentioned seeing a physio to me.  I am doing my exercises and try to go for a walk every day and have started doing a few more things round the house (nothing too physical) but I haven't tried driving yet.  Are you managing to do a bit more?

 

Best wishes to everyone xx

Member

Re: SURGERY AUGUST 2018

Wombat - I definitely agree with ElliesMum, any question or concern, we should contact our BCN. I have no hesitation in doing that. They don't mind, they have our best interests at heart, and they will know if something is odd or not.

 

ElliesMum - good to hear you're slowly getting there despite the trials and tribulations. It's not easy is it? That's such a shame you could not go to Australia but hopefully you can do that another time, but your health is important and your little one needs you. 

 

My latest news is that I actually have some, both negative and positive.

I've been my surgeon every week since my op 6 weeks ago, partly for a recon check up, but still needing my seroma in my back  aspirated weekly. Looks like it might be a steroid injection for me next week if I've built up yet another good quantity of fluid by next Wednesday - sure feels like it already since aspiration just 2 days ago.

Infection under my foob on the scar was healing after wearing dressings for a while and having anti-biotics, don't need the dressings any more and let it "breathe" as much as it can under a bra/croptop, but will have it looked at again next week to be sure all good.

I think my foob is starting to increase in size (it was "made" from LD flap muscle/tissue/fat, no implant) whereas was smaller than my remaining boob, will monitor that till next Wednesday's appt and see what he says. It looks great from the recon but a bit square in shape!

 

Started physio yesterday, she's impressed with my mobility and arm movement already, so will be seeing her weekly for a while, have daily exercises to do, and she's recommended a colleague of hers who does Pilates classes for BC ladies so will give that a go at the end of October (have to wait 10 weeks after op).

Pain and discomfort is somewhat lessened and more mobility but still on regular painkillers for another few weeks.

GOOD news is that FINALLY, after 6 weeks, my results are back. ER+ 8/8 and saw my oncologist last night, she's told me to take tamoxifen for 5 years - will see my GP on Tuesday to get that prescribed - more as a prevention to reduce risk of BC in my remaining (real) breast but with aim of reducing reoccurence in my foob although unlikely as all was removed in the mx, but within the 51mm of DCIS was 0.4mm of invasive. So tiny that a) no results for HER2 as below 1m so no chemo needed (hurrah) and b) if I don't get on with the tamoxifen after a few months to year, then, with her agreement and permission, I can come off it and we'll take a gamble as I'm low risk. As I'm mid-menopause she thinks Tamoxifen is best but I need to have blood tests to confirm menopausal state (so happy that I haven't had a period since last November, and very erratic before then).

 

Linda17 - how are things going for you - as we're are LD ladies from a similar date!

 

So I wish well to all the ladies on here, lots of hugs and best wishes for swift resolutions, recoveries and pain free days. Wishing you all a lovely weekend.

xxx

 

 

 

 

 

Community Champion

Re: SURGERY AUGUST 2018

I’ve been away for the forum for a little while and have just read through some of the latest updates.

Wombat, if your breast still isn’t feeling back to normal do get it seen to by the breast care nurses. I had my wounds checked as part of my pre-chemo assessment earlier this week and was told off for not getting it seen to earlier. I had been changing dressings on the drain wound (the only wound yet to fully heal) regularly and thought I was being sensible. It wasn’t infected but was still leaking fluid - and I also feel like I’m carrying it around at times, as you describe. It turns out that my body is still making too much fluid, causing the heaviness and preventing the drain would from healing. Cue more surgery (yesterday) and a delay of a week in starting chemo. As well as a telling off! So please don’t hesitate to ask your BCN team 👍

Quaggie, I’m so sorry to hear that you’re still in limbo. This whole progress is rubbish, isn’t it! I keep getting thrown curve balls too, so you’re not alone in having to navigate an obstacle course. In terms of deciding what recon options you might want, I can only share my own experience. I went for an immediate implant recon, as I wanted a quick recovery time (have a little girl at home who needs cuddles!) and wasn’t sure how I would feel going flat. This was also the option recommended by my consultant. In retrospect, I wish I had gone flat. Lack of clear margins and lymph node involvement mean that I will definitely need radiotherapy (with a risk of capsular contracture), and the time taken for the final wound to heal has ended up delaying the start of my chemo. I’m happy enough with the cosmetic result - there is a slight mis-match in size, but it’s not very noticeable in clothing - I just wish I wasn’t worrying about the ongoing infection risk and other complications at this stage. Good idea to speak with people and think about all of your options ahead of time. Also worth bearing in mind, as some other ladies on here have indicated, that you may not have the right body shape for all recon options (many non-implant recon options were ruled out for me from the get go).

Thank you all for continuing to be such a source of support, advice and kindness. When I was told by the oncologist that I would need to start chemo as soon as possible - and that I couldn’t delay for 4 weeks to go on a trip to visit family in Australia that had been booked months earlier and that I was really looking forward to - I was upset. But I managed to pull myself together and remembered the fabulous support that you ladies continue to provide, and I realised that I can do this. We can get through whatever rubbish they throw at us!

Love and hugs to all! Xox
Member

Re: SURGERY AUGUST 2018

Hi Wombat Woo, this isn't something I have experienced but I have heard of ladies who have had mastectomy’s having an itch on the removed boob. I’m not sure about the heaviness though, maybe you should check that out with your BCN. X
Member

Re: SURGERY AUGUST 2018

Morning ladies! This may seem like a strange and unimportant question - I had a WLE and my nipple was removed. My boob I think now looks like moomin.... my question is my boob feels really heavy and I often find myself ‘carrying’ it and my non existent nipple is itchy... has anyone else experienced this ???
Thank you 😊
Member

Re: SURGERY AUGUST 2018

Hello Annie, Love those Big Girl Knickers and to hear the good cheer coming through your voice! You are amazing to be reaching out to us - I salute your courage and determination. Keep the good days coming, sending lots of love, BRx
Member

Re: SURGERY AUGUST 2018

Wel done, Quaggie, you sound as though you are pulling through the worst of the worry. It’s amazing what the mind can cope with, isn’t it?

 

If it’s any help to know, my Mx and implant seem now to be behaving (6 weeks post op) and 3 weeks of radiotherapy lie ahead. Having felt very emotional about losing the breast, I’d had it for 50+ years, the new foob looks ok - a bit pink still, a neat scar across and no nipple but not a bad comparable shape. And I feel so well, I keep doing more than I perhaps should - just so longing to get to a stage when I don’t have a hospital appointment booked!

 

i also agree with the wise person on this thread that the experts really don’t know exactly what they are dealing with or, for neo-adj chemo, what’s worked until they open you up. I’ve definitely had contradictory or at least changing advice as a result, so although I no longer think my consultant team knows everything, I do believe they are always aiming for the best long term outcome.

 

Good luck with your decision - whatever you go for, it will be he right one for you.

Big hugs to all

BRx

Member

Re: SURGERY AUGUST 2018

Thanks to all your lovely ladies for your kind and supportive comments. They really helped me get through a difficult couple of days. I'm still processing the news and emotional about it all but it's starting to sink in a bit.

I'm still waiting to get an appointment with the plastic surgeon who would do any sort of reconstruction if I take that path and apparently they run a sort of ‘show and tell’ where I can go and meet women who’ve had reconstruction to discuss the issue and take a look at what they look like. Sounds a bit like a weird peep show but I guess it’s a good idea and it will be nice to talk to people who’ve been through the process.

Once I’ve done a bit of reading up from the leaflets my BCN gave me, I’ll also post a question on here and canvass views and experience from the women. This community is such an invaluable resource isn’t it?

I’m also meeting a Macmillan nurse at a local charity next week, and then seeing my counsellor so I can deal with the anxiety and emotional side of all this.

I’m mostly just frustrated at still living in limbo land. I had left my job just before my first op and had hoped I’d be in a position to look for a new job by now but don’t really feel it would be a good idea until I know what sort of recovery I’m looking at from this surgery. I also just want to book a holiday and fun things!!

Anyway, thanks again all for all your lovely comments and support. I’m going to be re-reading it all as I start making decisions about what’s next.

Hope everyone’s ok today? Autumn is definitely upon us xx
Member

Re: SURGERY AUGUST 2018

Sorry to read your post Quaggie, send you huge big hugs and hope you can make a decision that feels right for you. There's tons of posts on here and each lady has her own experiences and recommendations. Peronsally I am 90% happy that I had a LD flap recon at the same time as my mx. I owuld have preferred a DIEP but surgeon ruled that out. I was adamant I didn't want implants and knew I couldn't cope with looking down and seeing only one breast if I'd not had a recon. For me, I made the right decision even though it's a long hard slog. 

 

Fully agree with Feenix's post - use the "Someone Like Me" threads, talk to your BCN, ask her to show photos of other ladies who have had recon or gone flat. 

 

Wishing you all best and hugs x

Member

Re: SURGERY AUGUST 2018

Hi Quaggie

Thought I’d pop on from May surgery although I do qualify for this thread as like you I have had consecutive surgeries. I started off having WLE/snb in April then going on to rads but,  then had to decide about re excision because of undetected dcis. I’m glad I had the re excision, May, as it showed more dcis...although I wasn’t happy when I got my results and knew I would need a mastectomy. It is difficult, but treatment changes with results as it’s only when the histology is done that they really know what they’re dealing with. Being told about recon totally threw me off kilter and I was really stressed thinking it through, even delaying surgery for a week. In the end I had no recon which I had thought I would do initially when looking at my options. It was what I was most comfortable with and for me it was a case of getting rid of the dodgy boob first. I am 7 weeks post op and I can say it’s been an easy recovery compared to my first op...wle/snb. I adjusted quickly and I’ve been out and about from day one.

Like you, if my initial mammogram, ultrasound and mri had picked up my extensive dcis I would have had a mastectomy in April rather than August but that’s just the way it goes sometimes. It just feels like a long haul on the surgery side, and I had lots of delay getting results through. It’s definitely not easy as you wonder if you’ll ever get to the end and move on. 

Talk to your bcn, use the ‘Someone like me’ service on here, ask questions on these threads or pose a question yourself. There’s also Flat Friends, a closed Facebook group for women who have had mastectomy and no recon.

hugs xx

Member

Re: SURGERY AUGUST 2018

I really am sorry to read this Quaggie. Truly.  Thinking of you and wishing you strength.  

Hugs aplenty x

Member

Re: SURGERY AUGUST 2018

Oh Quaggie, it is really, really s***. I hope you manage to get your head around everything and get the advice you need,

Nicola xx

Member

Re: SURGERY AUGUST 2018

Hi Quaggie sorry to hear you didn’t get clear margins. I had chemo first which obliterated my tumours so instead of a mastectomy I had lumpectomy and full node clearance so I don’t have any experience to add. I hope you can get the answers you need and soon, a chat with a BCN sounds like a good option if you have one you can relate to. Sending you a hug x
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Re: SURGERY AUGUST 2018

Oh Quaggie. Sending you great big supportive hugs and thinking about you. The lovely ladies on here have given you advice but I don’t have the experience of reconstruction to help. But know I am thinking of you and do keep in touch and let us know what you decide.... 🤗🤗🤗🤗
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Re: SURGERY AUGUST 2018

Hi Quaggie. Sorry that you have had such long drawn out process but it is not easy to know what they will find until they get in. With my first mastectomy 17 years ago they found more cancer in it that wasn't detected so this time i went for the mastectomy right from the start as i couldn't live with that doubt after the first one. The rest of the breast was clear but i am still glad that it was done.

 

My first mastectomy i didn't have a reconstruction so this time i had them both done with a DIEP. I talked through the options with a surgeon and he advised this was the best optionfor me and would give the best result. This was dependant on my body shape and the LD was not possible as i didn't have a lot of fat there but i did have plenty on my tummy. I asked about implants on the basis it would be quicker and shorter recovery but he told me there was a higher failure rate and i would need more operations in the future as they had a limited life. I think every surgeon will have a different idea but you just need to talk and find out what the options are and what is right for you. If you want it over with for now then why not go for no recon and take that option later if you want to. I lived with one breast for 17 years and it is not the end of the world.

 

Sending love and hoping you get the information to make the decision that is right for you. The DIEP is a very big operation and you really need to be sure you want it to make that choice. I think i made the right choice for me.

 

xxx      

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Re: SURGERY AUGUST 2018

Quaggie - I'm realy sorry for all that you've had to go through and I know exactly what you mean about being bewildered having to make a decision about whether to have reconstruction and what type of reconstruction if you do.  I felt exactly the same.  I think it was the hardest decision I've ever had to make.  In the end I opted for the LD flap recon which I had 4 weeks ago.  I was lucky that I knew someone who had had it done and was able to speak to them about it but even once I had told my consultant what I wanted I was still wondering if I had made the right decision!  (I am a very indecisive person).

 

Good luck with your decision xx

Community Champion

Re: SURGERY AUGUST 2018

Hi Quaggie, sending a big hug as you have definitely been through the mill. I think it's very normal to feel how you do feel at the moment. It's the uncertainty, isn't it? I was lucky in that my margins were clear and so I had a WL E with full LN clearance, and to be honest the chemo was nowhere near as awful as I thought it would be. I think I'd built it up in my mind, especially as you only hear the bad stories. Not a walk in the park, but very do able. I did, and do, trust my consultants , and their success is my success. My tumour didn't show on my mammo either, so a real surprise when I found a lump. However , with the help of my wonderful team, including a psychologist who is working with me on my anxiety issues, I am soldiering on. Being 71 and stage 4 doesn't mean I'm ready to give up, although some days are harder than others . You need the big girl knickers, Quaggie. Get them on and you'll be good to go! 🍀. Have you a BC lead nurse to discuss concerns with? You can a,so change consultants. Your body - your decision. Good luck. X

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Re: SURGERY AUGUST 2018

Hi Quaggie, I had my Surgery on 13th September. I felt exactly the same as you. Told just lumpectomy on right breast, rads and tamoxifen. Then after MRI I was told mastectomy, because hey found two others. The Ultrasound did not pick them up.
lymph node biopsy and no rads just Tamoxifen. Luckily I didn’t have to go through a lumpectomy first. I’m waiting for my biopsy results but it will be another 3 weeks until I get those. But yes I became so doubtful and started to lose faith in my consutlant. I lost my father to prostate cancer 18 months ago and they kept changing the goal posts with him. I had that memory to contend with as well. But as my sister who’s a gp explained, our tumours are so small that’s why they don’t pick them up until we go under the knife and get the biopsy. We have to keep faith in our team, that they’re looking after us. They’ve caught the buggers and they will get the right treatment for us. I’m constantly stressing about the node biopsy and what if I need chemo? Well if that’s the treatment then that’s the treatment. But things have changed over years and they now weigh up if further treatment is worth it. It could turn out for example that having further treatment would give us a 5% chance of it returning. If we didn’t have further treatment it would have a 7% chance of it returning. Would a 2% chance be worth it?
Regarding Mastectomy, mine was a week ago. I had immediate reconstruction with implant. The reason I went for the implant is I wanted a
Shorter operating time and shorter recovery. My surgeon has done an amazing job and compared to my left one, it is slightly bigger and higher. But there must be huge amounts of swelling and it will drop. I also had 2 reductions in the past so I’ve got to be careful with how many surgeries I can go through.

Have you got a BCN, who can help you out at this time? Xxx
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Re: SURGERY AUGUST 2018

Hi all

 

Hope everyone's well - people have been a bit quiet recently so I'm hoping that means everyone is recovering well and out getting on with life and fun.

 

I'm feeling a bit bruised and low today as I had my follow up from re-excision op and was told that they still didn't get clear margins, with DCIS still present, so I'm now going to have a mastectomy after all.  I'm gutted and rather depressed by the news as it feels like the last two months and the last two ops were a waste of time and I might have been better off having the mastectomy straight away as at least by now I'd be on a better road to recovery.  

 

I also just don't trust anything the surgeon tells me now.  He told me at the time of diagnosis I'd only need one op then radiotherapy, then I'd just need the 2nd op and rads, and now the mastectomy and probably not rads. But I know that even the mastectomy doesn't guarantee clear margins and that if that doesn't happen then chemo might be an option.  So I feel constantly on edge and, yet again, don't know what the next few months look like.  The uncertainty is driving me insane.

I'm also bewildered by the options they've laid out - mastectomy without recon, mastectomy with implant recon and mastectomy with recon using my own fat.  I don't know where to turn right now.

 

I know this is all because it's new news and hard to process.  I'm waiting to hear about an appt with a plastic surgeon to discuss the recon options but at the moment I just want it gone and am erring towards not having recon.  I just want my life back.

 

Sorry to rant - am home alone and feeling vulnerable and scared.  This stuff really is s**t.

 

K  

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Re: SURGERY AUGUST 2018

Hi Belmont Rosie. I think we have to just trust that they will throw everything at the cancer and just cross are fingers. My tumour was small and nothing in the lymph nodes but it was a grade 3 tumour and I was told there was still a risk of it turning up in lungs or bones in the future. I want the treatment finished but i still have herceptin to finish plus letrozole and possibly zoladex which will go on for a few years yet. All we can do is take each day as it comes and live a little more than we would have done before we were diagnosed. Go on a few holidays and create special moments now but not expect the worst at every turn.

 

All the best.

xxx 

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Re: SURGERY AUGUST 2018

Big hug to you too, ElliesMum. Never nice to get disappointing news...

 

I had the same today, or at least that’s what it felt like at the time but only a few hours later I seem to have accepted it. Having previously been told I had responded well to 8 sessions of chemo, and my surgeon had said he’d got everything out with a full mastectomy, I was feeling I was in the home straight... but my oncologist said today that the sheer size of my tumour at 11cm and cancer intrusion into 11 lymph glands means that I have more than 50% likelihood of the Big C popping up somewhere new - and more serious - in the future. Bleeding heck... all this while I’m feeling pretty well - had cycled 10miles to and from the hospital! 

 

So my new mantras are Live for Today and probably also Spend a little Time & Money on yourself. What’s not to like?!

 

Chin up, keep thinking positive - it’s what we owe ourselves at the very least

BRx

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Re: SURGERY AUGUST 2018

Hello Nicola & all the fabulous ladies of Surgery August 2018!

I think it’s actually quite difficult to predict recovery rates - in my experience the surgeons & BCNs deal with symptoms but don’t tell you what to expect. So for what it’s worth, here’s my rundown following a full mastectomy (tumour 11cm) & lymph node clearance (11 lymph nodes cancerous) on 1 August:

* Fitted with 2 drains for 1.5 weeks

* 1 drain for further 1 week - for all this 2.5 weeks, felt v uncomfortable because kept tugging on the tube but otherwise interrupted nighttime sleep and naps during the day. Took it easy with lifting etc 

* Last drain removed at 2.5 weeks post op despite still producing 90ml per day - foob looked relatively normal apart from redness and a bit of heat

* Foob gradually got bigger over following week - I assumed this was as a result of drains coming out

* Over next 2 weeks, foob became positively Kardashian - not painful but really quite uncomfortable but kept going with walks, minimum housework/cooking etc!

* No change 6 weeks post op, although doing rather more activity-wise (out of boredom!) Eventually went in to see BCN and consultant at 24 hour notice - they took out more than 660ml and I went from overripe melon to wrinkled prune in 15 mins! At last I understood why my consultant had talked about inflating the implant ;-) as most of the foob shape was my liquid!!

* A week later has all filled up again so in tomorrow for a further draining

 

The point of the above is to say better to take it easy and avoid the oedema if you can than have the bore of being pumped out and the risk of infection. Your partner/family won’t be able to argue with that and don’t beat yourself up about not doing much. The scar may heal quickly, but the inside takes rather longer ;-)

 

Hope this helps, look after yourselves everyone

BRx

Member

Re: SURGERY AUGUST 2018

Hello Nicola & all the fabulous ladies of Surgery August 2018!

I think it’s actually quite difficult to predict recovery rates - in my experience the surgeons & BCNs deal with symptoms but don’t tel you what to expect. So for what it’s worth, here’s my rundown following a full mastectomy (tumour 11cm) & lymph node clearance (11 lymph nodes cancerous) on 1 August:

* Fitted with 2 drains for 1.5 weeks

* 1 drain for further 1 week - for all this 2.5 weeks, felt v uncomfortable because kept tugging on the tube but otherwise interrupted nighttime sleep and naps during the day. Took it easy with lifting etc 

* Last drain removed at 2.5 weeks post op despite still producing 90ml per day - foob looked relatively normal apart from redness and a bit of heat

* Foob gradually got bigger over following week - I assumed this was as a result of drains coming out

* Over next 2 weeks, foob became positively Kardashian - not painful but really quite uncomfortable but kept going with walks, minimum housework/cooking etc!

* No change 6 weeks post op, although doing rather more activity-wise (out of boredom!) Eventually went in to see BCN and consultant at 24 hour notice - they took out more than 660ml and I went from overripe melon to wrinkled prune in 15 mins! At last I understood why my consultant had talked about inflating the implant ;-) as most of the foob shape was my liquid!!

* A week later has all filled up again so in tomorrow for a further draining. Am hoping that the body will give up pumping out fluid after another couple of goes so that I can start radio!

 

The point of the above is to say better to take it easy and avoid the oedema if you can than have the bore of being pumped out and the risk of infection. Your partner/family won’t be able to argue with that and don’t beat yourself up about not doing much. The scar may heal quickly, but the inside takes rather longer ;-)

 

Hope this helps, look after yourselves everyone

BRx

Community Champion

Re: SURGERY AUGUST 2018

Thanks for all of the lovely hugs 😘. I’m feeling a lot better now. My boss has been great and would be happy for me to go home, but now that I’m feeling more pragmatic about it all I’ve decided to stay at work and get what I need to get done completed anyway. (I’m not very good at “resting”!)

It is such a rollercoaster ride, and your wonderful comments got me over the bump. Thank you again.

Great news, Linda, that there were no nasty surprises and the surgery was a success. Onwards and upwards! 👍

Best of luck, Christine and Quaggie, for your next set of results. I wish you both the best of luck for positive outcomes!
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Re: SURGERY AUGUST 2018

Hi everyone

 

I had my post op results appointment with my consultant this morning and it was good news!!  It was just DCIS and none of the horrible cells had escaped so the mx got rid of it all which means I don't need any further treatment.  I was told that this would be the likely outcome but I don't think they know for definite until they get it out so it was nice to have it confirmed.  She checked my reconstructed boob and my wounds and said it all looked fine and then said she didn't need to see me for 6 months!  I was quite shocked at this as I thought I would have regular check ups although I know that if I'm worried about anything I can contact my BCN.

 

Jane - My consultant said that I will have the numbness for quite a few months but it will go, however there could be a slight bit of numbness that will always be there.  Hope all goes well at your appointment on Thursday.

 

Thinkng about all of you waiting for results/treatment xx

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Re: SURGERY AUGUST 2018

Another big hug from me too elliesmum. It just throws rubbish at all of us in every direction and all we want is for the end of treatment and not yet more. I do agree that at least the invasive cancer has been found and removed but i know it will take a while for it all to sink in and the worry and some anger will need to be processed. Rant as much as you need to all of us on here as we have all been there in some way through this.

 

Oncologist appointment today to see what the next step is and hoping for good news. Determined to get all the information I can about risks of a return of the cancer versis the benefits and side effects of the anything new. Research has shown me that letrozole can thin bones and then some sort of infusion is required every 6 months. The nusrse talked about another lady that had to have a chemo port put back in for the infusion which i am not happy to do. Hated the port as it was so visible and uncomfortable but accepted it for chemo but am not prepared to have it put back in for 5 years as i want to forget the cancer and not be constantly reminded of it. I know my situation is complicated with not being able to take some drugs due to risks related to my leukemia  drugs, so i need to find the best combination for me mentaly as well as health wise.

 

Hugs to everyone

 

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Re: SURGERY AUGUST 2018

Sending you big BIG hugs Elliesmum, and lots of positive thoughts - we're all here for you. You've come this far, you can deal with next steps, keep being strong and know you're not alone and have faith in the medical profession that they'll deal with invaders. Feel free to rant anytime. We all know what it's like waiting for results and wondering what they will be, it's fear of the unknown and fear of the known but that's natural. Crossing fingers for you and if possible go home from work, put yourself first and try to relax. Hopefully there is someone that can be with you to give you a real hug but you have many virtual ones from us. xx

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Re: SURGERY AUGUST 2018

BIG HUG Ellie’s mum... this cancer stuff is scary and let the tears come... hopefully they now know what they are dealing with and the treatment plan will be what you need to deal with it.... I agree with Quaggie it can be a pile of poo, know that we are here for you and sending positive thoughts and hugs of support Wombat xxx🤗🤗