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SURGERY AUGUST 2018

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Re: SURGERY AUGUST 2018

Sending you hugs ElliesMum - always tough to wait for and receive results, especially if they're not what you were expecting/hoping for.  Presumably the good news is that the masectomy removed the invasive competent?  Maybe it was better that you didn't know about that part while you were undergoing the treatment as it might have increased your anxiety?  I know that it is horribly scary to be facing chemo but a lot of women say that the fear is worse than the reality.  But of course it is all sh*t and sometimes that's all you want someone to acknowledge isn't it?  So it is sh*t and I'm sorry you've been hit by this news at a time and place when you weren't emotionally ready.  Can you speak to your boss and maybe head home early so you can process the news properly? 

 

I'm facing the results fear too as I should get mine tmrw after my re-excision op.  I'm terrified they'll tell me that they didn't get clear margins and that I'll need an mx and chemo as well.  But I also just want to know so that I can start thinking about the next step.

 

Anyway, just wanting to send you a hug and good wishes ElliesMum.  We got you. xx

 

Community Champion

Re: SURGERY AUGUST 2018

Having a bit of a wobble today 😢 Got my results back and not what I was expecting. Having been told initially that it was all/primarily DCIS, when I had a positive sentinel node (micrometastasis) it was suggested there might be a very small invasive component present. Turns out the invasive component is 4.5cm! Freaking out now! I thought I had this all under control and new what I was dealing with...

Still waiting for hormone and HER2 receptor status on the invasive component (DCIS was ER-). I also know I didn’t get clear margins from the mastectomy. Informed that chemo is likely but not certain. So more waiting for results. I foolishly went into work today, thinking I could manage, but the phone call from the BCN has floored me! Sorry for the rant, just needed to tell some lovely people who would understand.

I hope you are all having a better day and that all wounds/breasts/nipples are healing well! Xox
Member

Re: SURGERY AUGUST 2018

Hi Michelle

Me too was told Oestrogen was weakly positive however they have told me I still need to take hormonal therapy for 10 years / tamoxifen for 5 then amorotose inhibitor following 5 years
I’ve started taking the tablets
X
Member

Re: SURGERY AUGUST 2018

Glad you got your dressings sorted Quaggie and pleased that everyone's nipples are more or less where they should be!
I also went to see my BCN today. She started talking about Tamoxifen but I didn’t think I was having that as at our last conversation she had said I had a weak oestrogen + link of 5/8. When I questioned her she said she’s not sure and I should ask the onc on Wednesday, but I think she knows more than she is letting on.
I’m HER2+ so have done Perjeta and doing herceptin for a year which has few side effects but all you seem to read about tamoxifen is the bad se’s Apart from lilac moons skin improvements most people talk of achy joints and hot flushes.
Sorry if you feel I’m making a fuss about nothing, I’m sure nobody wants to be told they have to take a drug for the next 10 years if their life I just really want expecting it.
X
Member

Re: SURGERY AUGUST 2018

Hi I had a mastectomy  with immediate implant reconstruction on the 6th August. Also a b cup originally. The new implant does sit higher and is wider than my real boob but the surgeon did tell me to expect this. The plan is to lift the other boob and add a small implant to try and balance them up at some point. I have the same problem with bras only fitting the implant side - I have been using a chicken fillet to pad it out but seems crazy to have been through the reconstruction and need a prosthesis on the good side so I will probably have to adjusted at some point. 

Member

Re: SURGERY AUGUST 2018

Ah, now I understand Lilac Moon. My incision is right round my areole too but I don’t think that means the nipple was taken off, just that that’s the neatest way to leave the scar.
Member

Re: SURGERY AUGUST 2018

Ladies, I did have my nipple back, it was just that I hadn't realised they were taking it off during the lumpectomy to then reattach it afterwards!
Poor old thing took the full power of the boosters during rads as well..........just as it was settling itself down to being slightly off centre.
Oh how I can laugh about it now!!!!
Member

Re: SURGERY AUGUST 2018

Hole not home... spell checker gone into overdrive !!!🤣
Member

Re: SURGERY AUGUST 2018

Hey Quaggie so glad you saw the nurse !! Finding a home wouldn’t be good... hopefully seeing the surgeon on Wednesday will offer even more reassurance.

Lilac moon when I took my bandages off and looked at my scar it was such a shock and I knew they had taken my nipple away ....

Stay kind to yourselves ladies..... hugs Wombat xxx
Member

Re: SURGERY AUGUST 2018

Ok, so I had a nice leaky blister and a bit of a hole under my steristrips but no infection, so my BCN just swabbed me with iodine and gave my some gauze to pack into my bra for now.  I see my surgeon on Weds so she'll check the wound again then.  She told me to go home and get some air to it - I better just remember to put a top on when the Amazon delivery guy shows up otherwise he's gonna get a bit of a shock! 

 

I'm glad I got her to take the steristrips off though as it was quite painful and I'd have freaked if I'd seen the hole when I was home alone.  Although probably not as much as if I'd found my nipple missing like you did LilacMoon!  That must have been a really weird moment.  

 

The BCN also said that most surgeons she's worked with in the past just use the glue to close everything up on an WLE rather than all the dressings my surgeon used (glue, steristrips, dressing) so then the patient could shower no problem.  Wish she'd tell that to my bloke! 

 

Anyway, onwards and upwards with a stingy boob! 

Member

Re: SURGERY AUGUST 2018

Thinking of you Quaggie xxxx
I remember when I took my dressing off for the first-time after surgery, I didn't realise they had taken my nipple off (thankfully they put it back) and it was just a huge shock as id been lead to believe that it was just going to be in inceasion across the top of my areola.
But the body has an amazing way of mending itself, with the help of Bio-Oil and Aloe Vera moisturiser.
Check with your BCN about lotions to take the itch away. I took heyfever tablets for about a week after my rads had finished as my chest area was really itchy. No skin breakdown or burning, just the side effects working their way out.
Xxx
Member

Re: SURGERY AUGUST 2018

Dear Mavit xx I've been on Tamoxifen for nearly 4 months now and can pin point a few things that I have noticed.
Yes, i still get tired mid afternoon and right now its 20 to 3 and I could easily have a kip!! Thankfully Im working from home so won't make a fool of myself if I nod off. Not really the done thingvin an open plan office..........
I think Im using the Tamoxifen as a reason for weight gain but Im battling that with a diet and exercise.
Main point really is actually a good side effect. YES there is one!!!! My adult acne has really really cleared up and I haven't had any major spots for 2 and a half months. So glad, as without makeup I needed a paper bag........

Lilac xx
Member

Re: SURGERY AUGUST 2018

Quaggie, if in doubt, get checked out! Have your boob and excision area looked at by your BCN. You'll feel better if told "all ok, nothing to worry about" than "why didn't you ring us sooner" and any good BCN worth her weight won't mind, patient's care and health is foremost.

 

Wishing you luck for your results on Wednesday. I shoudl get my final ones on Thursday and see if I'm ER or PR postive or negative then will see oncologist for next step if there is one.

 

Agree about the dog Michelle, it is a good excuse, good for you and the doggie, but like Quaggie it would be me and my headphones. I guess one encouragement I could have is to walk to various local supermarkets and get fresh bread, fruit and veg each day!

 

xx

Member

Re: SURGERY AUGUST 2018

I my think your BCN will thinknyou are bothering her Quaggie, it sounds like the sensible thing to do to me, I hope it gets sorted.
That’s the good thing about having a dog they make you get out every day! X
Member

Re: SURGERY AUGUST 2018

Sorry to hear everyone is feeling so tired.  We're pretty hard on ourselves aren't we?  We're going through such a mentally and physically difficult time and yet the slightest bit of tiredness and we think we're being weak.  I'm trying to get out for a daily walk as well, just wish I had a little doggie to keep me company.  Usually it's just me and my headphones!

 

Am off to see my BCN today as i took the dressing off my boob after my re-excision and its started oozing again.  Plus it's itchy beyond belief.  I just want to scratch it all off!  I don't think it's infected as it's not hot or sore or anything but I want the nurse to take the steristrips off rather than try it myself.  I feel bad for bothering her as I know she's really busy but I'd rather it get done professionally.  

 

Back for my results on Weds hopefully.  Am really anxious this time.  Can't help fretting as it could mean a full mx or moving on to rads.  I hate living from appointment to appointment at the moment.  Am hoping that this one will give me a better sense of the next few months so I can get a bit more organised.

 

Wishing everyone well today - remember to be kind to yourselves! 

Member

Re: SURGERY AUGUST 2018

Thanks Wombat Woo, good to know and yes it is probably to talk rads, I just can’t help the nerves.

Jane, I’m with you in that the body needs to rest to recover but for my mental well-being I like to walk. I like to do a 3 mile walk with my dog and friends everyday. I did it all through chemo and it’s what has kept me sane and the anxiety at bay. Unfortunately my head and body need different things at the moment to help them! I’m back walking today after a week of taking it easy so I’m hoping I don’t feel totally exhausted later.

Mavit I’m not on Tamoxifen but have had the odd occasion of feeling light headed. I even checked my blood pressure to see if it was low but it seemed ok. I’m also getting flushes but not night sweats. My periods had been becoming irregular over the last 12 months and then stopped probably because of chemo. So I guess I’m in menopause?
My boob had two incisions and is feeling ok now but my under arm cut it still sore too. It seems to be healing ok but can sometimes feel stingy and I check that it hasn’t opened up but it looks ok. I now have pretty good movement of my arm but plan to start swimming after I’ve done rads. The top half of my arm is still numb too, I think this can take quite a while to come back to life, and parts of it may always be numb.
Xx
Member

Re: SURGERY AUGUST 2018

Tiredness is normal, whether it's from full on mx with recon, just mx, or WLE, the surgery is a trauma to our bodies and whilst bodies can heal many things on their own, they need a bit of help from us, and letting our bodies take over and rest is one of the best things we can do. Take any opportunity to snooze, nap or sleep where possible and let the body, and the Knitting Nannas inside, do their job. It's terribly frustrating though that we feel so tired and any activity, even small such as showering, can wear us out.

 

And that doesn't even cover the mental tiredness, stress and anxiety, but we have to allow time for things to resolve and heal, rest, gentle exercise and sensible eating. Many of which can be easier said than done but we'll get there.

 

Hugs to all the tired ladies here xx

Member

Re: SURGERY AUGUST 2018

Hi all , hope you all had a good weekend and recovering well.
I am in week 5 since my aux node clearance and getting movement back in my arm however the incision underarm still sore and front and back of arm still numb. I am able to raise my arm but not for long time as get really tired and still hurts .

I still feel very tired in myself and basically not doing much around the house .. seem to be either glued to the Telly or sleeping .

I seem to be suffering from hot flushes during day and night sweats ( obviously my tamoxifen is now kicking in) . Is fatigue a side effect of taking these tablets ? I also feel very lightheaded during the day and can’t seem to work out what’s causing that

Still awaiting appointment with the oncologist so that I can start with the Rads

Member

Re: SURGERY AUGUST 2018

Hi Michelle. I too felt really tired at week 3 post op. But now at week 4 to 5 I feel so much better. I had a lot of rather long naps. 💤
Good luck with your oncologist - planning for radiotherapy perhaps ?? 🤗🤗
Member

Re: SURGERY AUGUST 2018

Hi everyone sorry I haven’t posted for a while. I have been getting really tired, and having to sit around during the day which is unlike me as I am usually pretty active. I really have to pace myself which is very frustrating. I wasn’t expecting to feel so tired especially 3 weeks after the op, Lumpectomy and lymph clearance. Is anyone else with a similar op having similar low energy? I am very impatient to get back to normal I know, but my expectations were higher!
I see the oncologist on Wednesday for the first time since Chemo. I can’t help feeling nervous even though I’m sure she can’t have bad news after the good results from surgery. Oh well I will find out then I suppose.
Hope everyone is enjoying their Sunday evening x
Member

Re: SURGERY AUGUST 2018

With my DIEP surgery i eas told i may het some feeling back if the nerves knit but it could take 18 months. Also eith regard to size i was told the body will absorb some of the implanted fat so my boob will reduce but i assume that wouldnt apply to an implant.
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Re: SURGERY AUGUST 2018

Yes it is really weird isn't it, I don't like to touch it.  I was originally told that most numbness would disappear but there may always be slight numbness around the back scar and the top of my arm from the SNB.  I can't remember being told about the numbness in my foob but I have an appointment on Tuesday so I'm going to ask then.

Member

Re: SURGERY AUGUST 2018

Again something that varies. Because of the size of my boobs, my consutlant always said the new one would not be as big as the original remaining one so potentially next year I may have lipofilling (from my stomach) for the new one to bring it up to match the remaining one, or have the remaining one redcued to match the foob, or I may decide by then to stay "uneven". 

 

Linda, I too don't know if it's lack of exercise or doing too much. Vicious circle isn't it? I've been told off for doing things I shouldn't, but I know I'll get told off if I sit on my backside all day! Smiley Very Happy

Oh! And were you told that you foob will always be numb? It's such a weird sensation to touch it and there's no sense but there is enough pain and discomfort. It's the Knitting Nannas!

 

 

Member

Re: SURGERY AUGUST 2018

Jane - that's just the same for me, I often wake up in the night with backache and if I stand or walk.  It's difficult to know what to do for the best.  I keep wondering if I'm getting pain because I'm not moving about enough or because I'm moving about too much!

 

Elliesmum - I would just like to reiterate what Jane said about your foob being bigger than your real boob.  I have also had LD flap recon and mine is bigger than my real one.  Like Jane said, it is quite swollen but also my consultant told me that she would be making my reconstructed breast bigger than my other one because they tend to shrink after a while.  I'm not sure if the same applies to an implant reconstruction but it may do.

Member

Re: SURGERY AUGUST 2018

Linda, there's enough room for my bf usually, now I hug my pillow I tend to move less, and in fact when I woke up around 4am this morning he was actually hogging a fair amount of the bed!

 

I did order the pillow recommended by Quaggie (thanks!) and expecting it to be delivered maybe Wednesday, so will report back after I've used it a few nights. I'm hoping it will help my backache too as I wake up with backache some mornings but then I get really bad backache if I stand up for more than 10 minutes. 

 

 

Community Champion

Re: SURGERY AUGUST 2018

Hi Jane, thank you so much for your suggestion - what a good idea! I hadn’t even thought of “supplementing” my real side to even things out! The BCN mentioned that my reconstructed side will be a bit swollen for a while, but did concede that it would end up being a cup size larger than the real side. She suggested I wait 3 months to see how things settle down and then give her a call then. Given that I’m not sure what my follow-up treatment will involve (although I do know I will need radiotherapy, as I didn’t get clear margins), I would prefer to get control over the current situation now, if I can.

I will look into the knitted knockers and partial prostheses right away! Thank you again! This forum is wonderful 🤗👍
Member

Re: SURGERY AUGUST 2018

Hi Ellie, I don't know if it's the same when an implant recon or a flap recon, but initially a "new" breast will be swollen, at least that is for sure the case with a flap recon that I had, so my new one is currently swollen and will eventually reduce but even swollen it's smaller than my remaining breast. As said, I don't know if the same applies to an implant recon.

 

Have you considered a softie? Either a standard prothesis which your BCN should have told about - or you can buy in M&S - and I think some health authorities will give a free one, or try a Knitted Knocker - honestly they're fab. They're free but welcome a donation, and you can choose what size you want and what colour, and with or without a nipple. I ordered a couple before my op and when the swelling as gone down will be using one to fill out my bra!

 

https://www.kkukciowix.com/

 

Your question is not silly at all, how we feel with our femininity is very important to our recovery.

 

Community Champion

Re: SURGERY AUGUST 2018

I hope everyone is healing well! Good to hear you’re starting to heal now, Susie.

I have a quick question for those who have had a mastectomy and reconstruction. It seems a bit silly to ask this, given the far more important aspects of treatment and recovery that we’re all dealing with(!), but it is niggling away at me. I had a single mastectomy with immediate implant recon 2.5 weeks ago. My reconstructed side is a lot bigger than my “real” boob. I have/had small breasts (B cup) and I completely understand that it is difficult to match things perfectly. I didn’t think the mismatch would worry me at all. Cosmetically, it doesn’t. It just feels a bit uncomfortable... I can’t find a bra that fits and doesn’t squash my reconstruction side. If it fits the reconstructed side, it provides no support to my real side. I know it sounds silly, but it is annoying me and is a bit uncomfortable (I’m also probably focusing on trivial matters to try and take my mind off waiting for final results 🙈).

Anyone else in the same situation? Any suggestions? Can you buy a bra with one B cup and one C/D cup? 🤷‍♀️ 😂
Member

Re: SURGERY AUGUST 2018

Susie, Good luck with the next stage of your treatment x I joined the forum just before starting rads as up until then I couldn't bring myself to look at, read, or even talk openly about my diagnosis, i just couldn't face it.
However, started rads in June and literally found the best support ever from the lovlies who were going through treatment as well. This forum has been just fab and although we all have different treatment plans its clear at the end of the day that basically underneath, we all have the same hopes and fears.
Rads is totally doable.
xxxc
Member

Re: SURGERY AUGUST 2018

Hi all
Hope everyone is doing ok.
A quick update, antibiotics worked but still hot red slightly blotchy noob and small seroma. Saw surgeon Friday 7th Sept he's happy with progress dosent need draining but he keeps telling me to get good supportive bra.
I have and been wearing them all day and comfort tops at night.

Will be seeing oncologists next week so i pop in the radiotherapy forum next all the support and advice from you lovely people is a great help.

Hugs to you all...onward to the end..xx
Member

Re: SURGERY AUGUST 2018

Jane - I'm surprised there's any room in your bed for your bf, it sounds like it is full of pillows! 

 

Quaggie - thanks for the pillow tip, I didn't know pregnancy pillows existed so I may look into that although I did actually have quite a good night's sleep last night with my one pillow at my side. 

Member

Re: SURGERY AUGUST 2018

Lovely to have an evening at the theatre Quaggie - so glad you enjoyed it.

 

I rarely go, but last time I went was about 2 or 3 years ago I think, and I saw Simon Callow, who was doing a one-man show about Shakespeare.  I was 'entertaining' an Austrian lady who was passionate about Shakespeare, so we also did The Globe tour.  I enjoyed both outings, even though I would never have chosen them for myself. xx

 

 

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Re: SURGERY AUGUST 2018

Quaggie. So glad you enjoyed King Lear. I imagine Ian McKellern was an absolute dream to watch. Xx
Member

Re: SURGERY AUGUST 2018

Hi Quaggie, thanks for the pillow tip, that sounds fab and I shall now go and do some online investigating, could be a great option! I can snooze lying propped up in bed on the v-shaped pillow with a normal pillow below it and one on top of it but I tend to slide down the bed eventually, or my bum starts to ache, and putting a pillow under my knees doesn't really help, hence the "hug a pillow" act!

 

Glad you enjoyed your trip to the theatre, and King Lear, and especially with Ian McKellern - he is a most marvellous actor and although good on TV, I imagine much better suited to the theatre than TV (although never seen him in the theatre). A bit (a lot?) of pampering goes a long way even if tiring. Sofa and books are right at the top of the chill out list I think!

Member

Re: SURGERY AUGUST 2018

Linda/Jane - I've found that buying one of those full length pregnancy pillows as been a game changer for me getting some sleep. I always sleep on my side and having to sleep on my back for the first few days post-op was torture (no real sleep had).

When I could sleep on my side I invested in the 'summer infant maternity pillow' from Jo Maman Babe as it has the bit for your head, the bit to cuddle down the side so you don't roll onto your bad boob and a bit that goes between your knees so your hips are comfy, and it also stops you rolling onto your back. It's been the best thing I bought and I might keep using it even after I'm fully recovered (although I live and sleep alone so have nothing else to snuggle with!)

Anyway, just thought I'd throw that out there in case you were looking for ways to get more comfy.

Lucky you having beauty therapist daughter! I've never been very glam but even I could do with something to make me feel a bit more pampered right now. Although I have booked a free oncology massage with a London spa place that I got through Ellie's Friends which I'm really looking forward to.

I feel completely shattered after my trip into London to see King Lear last night, but it was totally worth it. Amazing performances , I feel so privileged to have seen Ian McKellen in the role. I'm a huge theatre fan and not being able to book stuff was driving me mad so I feel happy I got to see something so wonderful. Today is all about sofas and books though to recoup the energy expended.
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Re: SURGERY AUGUST 2018

Ha ha, I don't think my little fat legs would enjoy 5 miles walking! Not yet, anyway!

Doesn't sound like you're doing anything wrong, it's just unnatural to be so "lazy" but as my BCN and consultant reminded me, it was a major op and that takes time to recover from. Really realizing that now.

 

I'm sleeping more on my right side with my left foob resting on my pillow. Imagine a pillow is usually horizontal across the bed. I have my pillow lenghtways on the bed and effectively cuddle up to it, and it creates a protective barrier between me and bf! So horizontal pillow in normal position on the bed, with v-shaped pillow on top of that, then vertical pillow on that. I try not to lie on my back too much if I can as gives me backache and makes me snore!

 

You are so lucky that your daughter is a beauty therapist, you've no excuse to not look glamorous even if you may not feel it! 

 

Oh, I didn't mind the stockings, they will just be better in the winter when hidden under long trousers and boots. As soon as I'm fit enough to travel to the south coast to see my parents or my bf's parents, I will be wearing the stockings for the car journeys as the journeys are 1.5 and 2.5 hours respectively. So don't throw yours away, keep them for long transport journeys.

 

Member

Re: SURGERY AUGUST 2018

Hi Jane

 

I'm pleased you didn't say you've been for a 5 mile walk or something similar otherwise I would've been worried that I was doing something wrong.  I know what you mean about feeling guilty watching watching our OH doing everything and not being able to help.  I stopped wearing the lovely stockings about 3 days ago and it was great - I hated wearing them!

 

My surgery was on my right breast which is the side that would be next to my husband in bed.  I was surprised to hear that you've been sleeping on your front, I don't think I could do that as it would be too painful.  I've been sleeping on my back which, to be fair, is also quite painful - we can't really win can we?  Actually, I did manage for the first time last night to sleep on my left side for a while which I couldn't do before.

 

Hope you get to your manicurist soon - I'm lucky that I don't have to go out to get my nails done as my daughter is a beauty therapist! 

 

 

Member

Re: SURGERY AUGUST 2018

Hi Linda,

 

Our similarities are amazing but as expected cos of same surgery. Glad you're slowly progressing too but it's a long hard slog isn't it. Even when we feel we are up to doing something, it's tough and then realizing, or being told, it shouldn't be done. Or just sat there feeling useless and guilty when the OH is doing everything. Everyone tells me off! My friend came round earlier for coffee (she had the same op a few years ago) and told me off for putting both my arms round to hug her, as it meant I lifted my left arm a bit too much in her opinion, and she offered to make the coffee until I assured her I'd filled the kettle only just enough and was using my "good" arm to lift it!

 

I've only been out for a few hospital appointments and one short walk of 10 minutes to the local supermarket. Missing not be able to drive. Planning to do some short walks so that I can build up to walking a mile to my manicurist's house so I can get my nails manicured and gelled! See if you can at least go for a short walk up and down your street, not too far from home, take your husband with you if necessary for company/comfort. Hopefully even if you've not been out much you have now been able to remove yuour surgical stockings?

 

Not sure what side you had your surgery on and which side of the bed you sleep but my bf hasn't knocked me once in his sleep, even though I'm sleeping on my front with my operated side towards him.

 

Hope your recovery cointinues to go well x

 

 

Member

Re: SURGERY AUGUST 2018

Quaggie, the T-Rex arm made me smile. Im the same, always have my noob protected. Even when out and about with my boyfriend I walk on his left and slightly behind, he's my boob guard!!!

Thought Id just drop by and offer an insight to how it can feel 4 months after surgery. I was thinking that at least that way you lovelies might at least know what type of things to expect. I know we are all different but a bit of inside knowledge is a grand thing.
I had a WLE and 3 lymph nodes were taken at the time as well. Margins and nodes all good. I do a lot of yoga and the day after surgery I had a home visit from the hospital at home nurse, I was already able to move my arm freely. I did have a large area of numbness in the general area of where my blip was and also around my SNB wound. This slowly wore off over about 6 weeks. Fast forward to now and i am 9 weeks post rads.
I still have a tiny bit of tenderness just to the left of where my blip was, some nerve pain every few days (feels like hot pin pricks) and around my scar from the SNB it can sometimes feel like Ive pulled a muscle. But all in all things have settled down and the rad tan only appears when Im hot and bothered.
So just a simple overview really of whats happened all these months down the line. Hopefully those of you who have recently had the same procedure as me can now know what kind of things to look out for over the next few months of recovery.
Sorry if I've gone on!!!!!!
Good luck all of you xxxxxxx
Member

Re: SURGERY AUGUST 2018

Jane - I've just read your post from this morning and it was good to read because nearly everything you said is the same for me, I suppose it would be as we have had the same surgery.  I also tried to reduce my painkillers and was told not to by my consultant.  I'm trying not to do anything apart from my exercises but it is hard although my husband is being really strict with me and won't let me do anything.  I'm also sleeping with a pillow at my side and still find it quite unconfortable when I'm laid flat in bed - my husband is sleeping in the spare room as he's scared of knocking me in his sleep.  It sounds like you had a fairly good experience having your op done privately - I think I was quite lucky because I also had a private room even though I had mine done on the NHS although I don't think my food would've been as good as yours!  The only time I've been out of the house is for my hospital appointments and I would love to go out for a walk but I don't know if it's too early - have you been out yet?

 

Tigermum - I'm really sorry to hear that both you and your husband are going through cancer treatment at the same time, that's really unfair.

 

Best wishes to everyone x

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Community Champion

Re: SURGERY AUGUST 2018

Quaggie, I’m so sorry to hear you’ve been having a bit of a tough time with things. I think it’s totally normal to have a wobble - or five - at this stage of treatment! Many of us are still digesting the news and to see such a young public figure pass away from the disease is really shocking. Good on you for heading out to the theatre! I hope you had a fabulous time 👍

Waiting for results is so frustrating! I’m not the most patient person at the best of times 🙈 and had been told I would receive results at my appointment on Tuesday this week. I saw the surgeon and he is pleased with how everything is healing... but my full results aren’t back yet. I have to wait another week! Oh well. I did get my drain out, which is something. So pleased that is gone now!

Tigermum, it sounds so tough to be dealing with this rubbish at the same time as your husband! Hopefully you can arrange your treatment plans so that you can support each other.

Thanks Jane, Christine and Linda for updating us on your progress. It’s really helpful to hear how you’re going and more details about your recovery.

I hope you’re feeling better soon, Mavit.

Love and hugs to all! Xox 😘
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Re: SURGERY AUGUST 2018

Hi Tigermum. So sorry to hear that you are both going through this. Talk to your BCN and your oncologists there may be support available for you both from Macmillan to help whilst you both have treatment and a form of care package may well be available. The main thing is to ask for help and not try to struggle on alone. Your GP may also be able to assist.
I hope it all goes smoothly for you both 🤗
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Re: SURGERY AUGUST 2018

After being diagnosed in January, and surgery delayed for family and other reasons I was put on Letrozole in March. Finally I was able to get my surgery booked in for 20th August. I saw my surgeon today and was told that the right breast mx was relatively successful, in that he removed 7 cancerous lumps and a total of 3 out of 13 lymph nodes were also cancerous. 

Because of the spread I was told that the oncologist wants to see me to discuss chemo, radiotherapy and hormone treatments. Previously we had hoped that chemo would not be necessary. But I will have to discuss it at the appointment. 

What is playing at the back of my mind is that my husband has stomach and liver cancer and is probably due to start another round of chemo in Novemebr. It would mean that we are having chemo at the same time and not knowing how we will cope as it is just the two of us. 

 

Not really hoping for an answer here, but I just need to get it off my chest somewhere where people will understand. 

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Re: SURGERY AUGUST 2018

Hi Jane.

I used private medical insurance too and i did have a breast cancer nurse but a loss of communication on a change over to a new one has left me without one now. A few calls and i am sure i could find out her name and have the contact. The main advantage i think was that the chemo was done in a much less crowded room but i think most of the treatment would remain the same. My reconstruction surgen told me me the same hospital and team would do the work if i was nhs as to private but of course i did get my private room.

 

Like you I was on the verge of the meopause so hormone treatment needs to be decided. I was positve for everything and see the oncologist next week to find out the nest step. This should be letrozole as far as i am aware.

 

Recovery from surgery is slow and steady. 3 weeks after the DIEP and have dressings on for another week. Things are improving but movement is still not easy. Getting out of bed ad off a low chair take time. I am not allowed to do much at all but do want to start a few things from week 4. I am not good at seeing things that need to be done and not being able to do them. Using a vacuum cleaner may be out of the question but i have started grabbing a dustpan and brush for odd bits. I want to get back to doing the shopping but heavy bags are a few weeks off yet. My fridge is full of fresh food bought my husband that keeps needing to be binned as he buy too much. Lovely he has made the effort but he is not used to it.

 

Sleeping on my back still and proped up but not sure how long i need to do that for. Control pants and sports bra 24/7 are needed for 6 weeks post op so i still have 3 more weeks of that unfortunately. My skin needs to breath and is very dry and itch even though i use moisturiser.

 

All the best to everyone and a painfree recovery

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Re: SURGERY AUGUST 2018

Quaggie - enjoy King Lear !!! Hope you don’t need to nap half way through 🤣😴

Jane - hope your doing well - I didn’t use my medical insurance as I wanted to make sure I had a breast care nurse and access to all the support networks, but it sounds as if you got all this too.... 👍

It is definetly autumn today a real chill in the air - I might have to have a nap under a blanket today 🍁🍂

🤗😘
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Re: SURGERY AUGUST 2018

Hi all

 

Just catching up on everyone’s news. Sorry for the long post but wanted to touch based with everyone’s messages! 

 

I’m struggling emotionally a bit at the moment.  The first few days after my re-excision I felt completely exhausted and awful - much worse than I had after my initial WLE/SNB - but I suspect that is because after the first op I really took it easy, whereas after this second one I was trying to do everything as normal as I’d felt so well just before.  I have to keep reminding myself that even now I’m not even a full week post-op so not to try and do too much.

 

My boob is hurting a bit more too, but I guess reopening the original wound is pretty harsh on the nerves so I’m trying not to worry too much.  And take the painkillers when I need them.

 

But the thing that really took the wind out of my sails this week was the coverage of Rachel Bland’s death.  She was only a few years younger than me and I had started to read her blog and thought our initial diagnosis and reactions were very similar (although she was TN when I’m not).  I had been feeling ok that day then the news popped up on my laptop and I just had a bit of a meltdown.  I’ve seen a lot of women on the younger breast cancer Facebook group I’m on react in the same way.  We hear so many positive stories about recovery so such a public loss is hard on us all.  I’m thinking of trying to write something in my blog about it to try and make sense of my feelings.  So crappy and sad.  

 

Also really worrying about my results next week - I hadn’t been too anxious after my first op as no-one had warned me that another op might be an option but now I know that a might be facing a mx and possibly chemo I just can’t get the anxiety monsters nibbling at the back of my brain.  

 

Anyway, just going through everyone’s messages:

 

ElliesMum - glad you’re feeling so good post MX, hope that is continuing.  I think we all play the ‘why me?’ game especially if you avoid risk factors but it can just be down to one dodgy gene that you yourself can do nothing about!  I try not to blame myself.  As my counsellor said ‘is there any evidence that a liking for chocolate causes breast cancer? No.  Then don’t blame yourself’.  And no, nothing from surgeon yet.  I don’t think they can tell during the op about margins but have to wait for pathology results.  Think I will hear next Weds.  Yikes!

 

SusieOne - how’s the infection and seroma now? do you feel a bit more comfortable? Is your Friday appt for any results or just to follow up on the infection?

 

Mavit1 - how are you?  Your last message sounded like you were struggling a bit which is totally understandable after all you’ve been through physically and emotionally.  I’m with your GP on not worrying about the weight thing for now. I know it can be depressing to feel you’re not like you were but you need to let your body deal with the healing and then you can focus on regaining weight levels and fitness.  I think the body and brain can only deal with one thing at a time well.  As you’re feeling low have you investigated finding a counsellor locally to talk to?  Someone who isn’t a family member or friend?  I know us Brits are useless at ‘talking therapies’ but I do think it can be really helpful - even if it just gives you a space to cry/shout/stamp etc - whatever you need to release a bit of pressure.  Also, I’m just sitting about doing nothing at the moment so if you want to PM anytime just coz you need a vent then do feel free! 

 

Nicola - how are you doing now?  Glad to hear you’ve been out but yes, expect to be knackered by things that wouldn’t have bothered you before.  You’ll get to the place of feeling less exhausted pretty quickly but only if you also allow yourself to rest up when needed.  I totally get the feeling about wanting to protect yourself in busy places.  I used to commute to central London until just before my first op and had no problem barging through crowds at busy tube stations but now I am much more cautious and anxious.  I’ve developed what I call my ’t-rex arm’ in which I pull my arm up in front of me to protect my boob.  It’s silly but it offers some comfort.  

 

Linda - congrats on getting all your dressings removed.  So glad you’re happy with the way it looks and it’s made you feel so positive - those days really help.  Hope the pain has eased a bit by now.  Managing it is tough but two friends who are a GP and a pharmacist have told me that the best way is to take the pain meds regularly rather than just as and when you feel it.  It means your brain can pre-empt the pain.  

 

Jane304 - really interesting to read your full story.  It’s hard to come in at the end of along forum thread and read everyone’s background.  Interesting to hear that you haven’t had hormone results already despite all you’ve had done.  I got mine after my first biopsy so was told from day 1 that no matter what treatment followed I would need hormone therapy (probably Tamoxifen).  Totally get the emotional meltdowns too - I can be fine for days then have a simple thing throw me and I end up a sobbing heap.  And lucky you with the private healthcare - you certainly get the best food! Although my GP friend did say that the NHS cancer care is the best in the country and that cancer patients always get priority for everything! 

 

Right, that’s enough from me.  I’m giving myself a complete resting at home day as I’m off to a marathon 3.5 hour theatre show this evening.  Seeing King Lear with Ian McKellen.  I’d booked it back in January so I was damned if I was going to miss it! 

 

Sending strength to you all - keep on keeping on!! 

K xx 

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Re: SURGERY AUGUST 2018

Hi Linda, thank you ☺️, I managed out again yesterday but it totally knackered me! I suppose it’s like folk have been saying, we’re all unique therefore our recovery will be so too. Hope you managed your walk 😊

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Re: SURGERY AUGUST 2018

First of all, sorry to all you ladies that I had intended to reply to your posts of your progress but events rather ran away with me and I got focused on other things. Briefly reading though seems many things have gone well for you all but I need and want to do a deeper read of your posts. The community spirit is so helpful to us all but I have give more and get off my lazy backside - more of that later!

 

So, before I settle down and have a good read of your stories, below is the summary of mine, bit longer than intended but gives all the info and maybe some of it may resonate with you or give you comfort that how things are going are usual, etc, you know what I mean.

 

Read/comment as you wish.

Cheers!

 

 

May 2018: Diagnosis DCIS 5cm left breast

21st June: SNB 3 lymph nodes removed, all clear

16th August: Mastectomy and LD Flap reconstruction left breast

 

Hospital stay was 7 days/6 nights. Recovered well from op, was in surgery for 6 hours and in recovery room for 3 hours, so back in hospital room at 11.30pm. Eating well from first morning after op. Had catheter in for first 36 hours. Medication during stay was Oxycodone, Gabapentin and Paracetamol. Had a very high temperature 48 hours after op, blood tests showed no issues but was put on IV Antibiotics for a couple of days then moved to AB tablets. Had 3 drains – first removed on day 5, second removed on day 6 (very painful removal), third removed on day 7, the wound of which then leaked and burst (very messy!) resulting in very large padded dressing applied. Discharged later that day.

 

Since then have been resting as directed, and napping a lot during the days. Found a reasonably comfortable sleeping position after a couple of nights at home (combination of lying on/cuddling v-shaped pillow and normal pillow so lying on right side to rest the left side on the pillows). Taking paracetamol and codeine tablets every day but will switch from codeine to ibuprofen when codeine runs out, as advised. I had actually stopped taking painkillers regularly so only when I felt the need but consultant and nurse told me off yesterday and said I must take them regularly until further notice. Also wearing a bra 24 hours a day, even for sleeping (although tend to wear a crop top for sleeping), to give support to the new boob even though it’s fully numb, as is part of my back from the LD flap and I have a very visible dent in my back!

 

Dressings were all removed one week after discharge and a seroma in my back has been drained 3 times since discharge (28th August: 300ml; 31st August: 100ml; 5th September: 50-60ml and will probably need more drainage next week - consultant says this is normal). Bruises have healed well, scars are looking good (one across the left side of my new left breast - fortunately skin and nipple were spared - and a long one from under my arm round to the middle of my back).

 

Really trying to follow rules about NO housework etc but find myself doing little things. Again, was told off for that, as that has contributed to the pains/discomfort along with lack of painkillers regularly – and it was always told to me that pain/discomfort would last for quite some time as it was a major op). So back on the regular painkillers (every 6 hours) and doing almost nothing at all, unless it’s very, very light activity (boyfriend has been extremely good at doing all the housework and he’s the chef in our house anyway – and he’s my chauffeur to/from appointments). But I am doing the exercises three times a day and will be seeing a physio at end of September.

 

Got most of my histology results yesterday: DCIS 51mm of which 0.4mm was invasive. Evidence also of Lobular Neoplasia (LCIS). Still waiting final results to see if receptors are ER or PR. Will be seeing oncologist in 2-3 weeks to discuss potential hormone therapy as risk of BC in right breast occurring is 4 times higher than someone who has never had BC. Expected hormone therapy might be Tamoxifen or Anastrozole, but to be discussed with oncologist, as I’m going through my natural menopause since a couple of years.

 

So summary is: all is as expected so far, pending results on receptors next week and what that might entail as any next step. Everyone (friends/family/medical staff) tell me I’m doing very well. I’m not having too many emotional meltdowns but they do crop up every so often but only for about 5-10 minutes at a time. Have a weep, get it out of my system and move on. Despite the pain and discomfort am  enjoying the time to read, watch lots of TV and rest, and not having to work for at least another 2 months (was always told by my consultant that I would need 3 months recovery).

 

One other thing I will add. I was lucky enough to have medical insurance through my employer so all treatment is breing done privately. I loved having my own private room at the hospital (I'm not good socially or where there's noise) and a really good food menu (it was more like a hotel despite the medical stuff!). As is the case with all medical staff, whether private or NHS, they were all totally lovely and I have so much respect for all they do.

 

Finally, I have no regrets having had a mastectomy with reconstruction. Size of the DCIS ruled out a WLE and the recon, although smaller than my remaining breast, at least gives me a good cleavage when in a bra and top, when I look down at myself! (My OH was right when he said I'd most likely not be happy being flat on one side). My consultant has suggested possible lipo-filling next year to bring new breast up to size or have breast reduction on the right breast. Will see how things go.

 

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Re: SURGERY AUGUST 2018

Hi everyone

 

I had all my dressings removed today and was told that my wounds are healing nicely.  It also meant that I got to see what my new boob looked like without anything covering it - I must say it looked pretty good really, just like my real one but a bit bigger (apparently it will shrink slightly).  I also got to see my reconstructed nipple for the first time and that looks pretty good too.  So all in all a pretty good day today.  All I need now is to get rid of the pain and not to feel exhausted just going up and down the stairs!

 

Nicola - I think it's great that you've managed to go to the shops only a week after your surgery!  I'm two weeks post op and can't really do much at all.  I haven't been out of the house yet (apart from my hospital appt) but I'm hoping to walk round the block soon.  I'm not too worried though as like my consultant said it's like having two operations in one go (mx and LD flap recon) so I suppose the recovery will take longer.

 

 

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Re: SURGERY AUGUST 2018

Hi

Thanks for the replies ladies. I ended up going out but was quite nervous, couldn’t believe it. Last Monday was the day before my surgery and I swam 40 lengths, cleaned the house, picked up my mum from the train station 17 miles away and went out for lunch. A week later and I’m worried about going to a couple of local shops 😂. I wouldn’t have managed walking to them all so drove instead. By the time I got back to the house I was sweating and took your advice Quaggie, I had to go for a wee rest, but I did feel accomplished. Isn’t it strange how much cancer changes things, and so quickly too? Got the guy in the supermarket to pack my bag for me, felt embarrassed doing so though so explained I’d had surgery and had to be careful. I was so aware of anyone coming near me in case of a collision too.

 

Quaggie, got my appointment through today for my pathology results, it’s Monday 10th September. Been faithfully doing my arm exercises too, I feel they make a difference to my range of movement. I’m sorry to hear you’ve had to have a second surgery, I hope you’re doing okay recovery-wise.

 

Wombatwoo, it’s great to hear your experience a couple of weeks further along, there is light at the end of the tunnel. I think what you said about listening to your body is vital - I have always moved at a million miles an hour but getting cancer has made me slow down and listen to my body. In the early days after diagnosis it meant allowing myself to be sad and cry and having a jammie day if I needed to, and not scold myself about it.   And it’s equally applicable now when I need rest and recuperation.

 

ElliesMum, I like your idea of easing into things, very much my style at the moment 😊. I have a history of rushing into doing too much too soon and then suffering the consequences  (after childbirth and previous BBR) but I think getting back into it slowly is defo the order of the day. I hope you enjoy a steady recovery too.

 

Thanks again for your wisdom ladies, lovely to chat although under sucky circumstances,

Nic xx