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4th Re Excision or Mastectomy?

22 REPLIES
NJS
Member

Re: 4th Re Excision or Mastectomy?

Hi Evie,

 

Nice to hear from you. 

 

I hope I get the same news as Stirts too but I really have to be realistic. At least I know I have the man who can! Crazy coincidence we have the same surgeon!

 

Been really researching implant reconstruction after a mastectomy as I think it will end up going this way. Your insight here has been very helpful and rather than going flat I am going to try the implant. The counselling has been helpful and I feel clearer in the decision making now. 

 

You forget about logistics for treatment, what an added stress for you, a 2hr round trip each day would tire anyone out. Your friends and family sound amazing, what a brilliant and practical way to help. Really happy your side effects were manageable, hoping beyond hope this is the same for you Stirts. Evie-did the tiredness build up over time or was it instant? Did you feel it once the sessions had stopped? How long before you felt “normal” again?

 

Will be sure to let let you know the results, this time next week it will all be clear 😬

 

N x

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS and Stirts

What a coincidence that you both have the same great surgeon - NJS, I so hope that you will get the same news Stirts did.

 

I’ll leave the two of you to chat (although very happy to answer any questions either of you have), but I wanted to come back to you NJS on radiotherapy. The only real side effect I had was tiredness, but a lot of that was having to go to the hospital every day - the best part of an hour each way for a 10 min appt. Luckily my friends and family organised a rota to drive me up there each day, that really helped. I think the main things are to rest, drink plenty and keep moisturising. I wish you both all the best for the next stage and please do ask me anything. I will keep watch for NJS’s results on 25th.

Evie xx

NJS
Member

Re: 4th Re Excision or Mastectomy?

Hey Stirts!

 

Yes, that does make sense. He told me the record attempt at Edinburgh was 7-not that helpful! I’ve always been amazed at how relatively easy the surgery process has been and pain free, I was expecting to be really debilitated by it. Lucky to have got such a great surgeon.I laughed when I read what you’d said to him and his reply-very funny! 

 

Interesting about the pathology wait time, I was they were short staffed as a few of the team had retired. I’d have thought it would have been the same.

 

Enjoy your very well earned break, Pitlochry is gorgeous. Rest up and stock up those super strength reserves 💪🏻👊🏻. I read you can get run down, I’ve been taking Vitabiotics Immunace Extra strength and so far have been cold free since my diagnosis at the end of August. 

 

Thinking about you lots too lovely 👯‍♀️ X

Member

Re: 4th Re Excision or Mastectomy?

Hi NHS

It all makes sense now as I think Mr Barber is one of the few who will have a 4th attempt as most others give up at 3 ..that's why you couldn't find anyone else who had the same experience. It also explains why we both were pain free and felt the surgery was not too bad, even after 4 in such a short space of time, as he's a great surgeon.

I was also told that I was very unusual ..and there's you going through the same only a couple of weeks after me !!

Remember he told me ..we always get there eventually ..so take heart in that.

I also told him last time not to take it personally  but I was glad I wasn't going to see him for a while ..and he said "me too".

It's rubbish that you're having to wait so long for the results ..it was only 12 days at St John's ..I would have thought they all used the same Pathology ?

I'm in Pitlochry for a couple of nights ..just a wee break before all the radiotherapy starts full on. 

You take care I hink about you a lot just now..positive vibes !!

Xx

NJS
Member

Re: 4th Re Excision or Mastectomy?

OMG Stirts - YES! Mr Barber is treating me at the Weston! We really are 👯‍♀️! I think he’s great, I love his manor and really trust him. Did you know he likes listening to heavy rock whilst operating?! Despite all the angst I quite often find myself laughing at his dry sense of humour. When I asked him if I’d done anything lifestyle wise to cause this he just leant forward in his chair and said “No, sometimes life’s a bit@h!”

 

The forum censored me on my shi@*ytittybangbang, I didn’t write “bleep” obviously! 😂. Potty mouth! Glad you like that one, you’ve got to laugh haven’t you?! 

 

We were meant to find find each other! Can’t believe it! 

 

❤️💪🏻x

 

 

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS

This is so weird !!

Was it Mr Barber who did your surgery at the Western ?  He did 3 of my ops at St Johns in Livingston and I had 1 in Edinburgh.  AND if so, that should give you even more hope as he was successful with me ! 

Also my radiotherapy will be at the Western !  

Had to laugh at the **ittytittybang bang ...that song is going around in my head now using these words ...Smiley Happy

👯‍♀️X

 

NJS
Member

Re: 4th Re Excision or Mastectomy?

Hi Stirts,

 

How are you? Hope you had a good weekend full of relaxation and fun things?

 

Your trip to the GP sounds really tough, so great you were brave enough to get help and brilliant you have a lovely supportive husband. Reaching out and admitting you need help mentally because of something you are going through physically is hard to do as it doesn’t feel natural, none of this does though. Sounds painfully similar to my GP fun trip out last week. I had to wait outside because of my anxiety and then was a snotty sobbing mess. I felt pathetic and that I should be able to cope with this, GP was great though and said 4 surgeries was not normal and was amazed I was at work.

 

Like you I don’t recognise who I am right now. Without wanting to sound like an idiot, I hold a senior job and in truth am always in control, if I want something I work for it, save for it or just outright ask. That’s why work feels like my safe space right now as it gives me confidence in myself and normality. This has really shaken me upside down. I feel so sorry for my poor husband living with an emotional wreck. He’s been amazing, a good test 2yrs into marriage. Thankful he can’t return me! Not sure if you watch Homeland, my cry face rivals Carrie’s but without the jazz right now. We do laugh though, mainly at grossly inappropriate things! I call my boob s*it tit right now and this period of my life will be known as **bleep**tytittybangbang. Not so sure it would make a jolly family musical though!

 

Diazepam sounds fun, I left the GP empty handed! Although I have a massive stash of the dihydracoedines now, they make me very sleepy. Was so desperate to get home ASAP last Monday I kept nodding off while trying to get dressed in the chair by the hospital bed and trying to hide it from the nurses so they would let me go. Forgot they gave me 2 after surgery, don’t like taking them because of the drowsiness. No pain so no need thankfully.

 

Radiotherapy definitely does not sound fun, you’ve come this far so will totally smash this too. In some twisted way all the surgeries have made you super resilient and able to take this all in your stride and by the sound of it with a smile as you know you on the home straight. That’s great news about no side effects to the Tamoxofin, really hope that’s still the case?

 

Waiting for results sucks, it’s 3 weeks in Edinburgh because the pathology department is short staffed. Boo.

 

👯‍♀️X

NJS
Member

Re: 4th Re Excision or Mastectomy?

Hi Evie,

 

Hope you had a good weekend? Technology not my strong point either, I think it would be easier if I were a robot, took me several attempts to work this out too!

 

Cat Meffan is really worth checking out. She’s a great teacher for being online and gives options. She’s amazing at yoga but doesn’t make you feel a looser if you aren’t! I find the breathing techniques she does on the tutorials helpful. The Yoga Nidra meditation is a great way to relax, I’ve found it very helpful. This sounds really hippy but I did one of her chakra meditations recently, you focus on different colours and then see if you can change, quite trippy but a brilliant way to totally distract the mind. I found meditation socially awkward before but now love it!

 

Also been googling boobs obsessively 😂, got to keep clearing my search history as I only have a work phone and iPad! Think I’m pretty much decided on the implant reconstruction. Good intel on the R1/R2 creams too! Hopefully of use to Stirts. Really good to hear your skin was fine, that’s a big worry. Did you have any other side effects?

 

Big hug 

X

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS

 

I certainly felt very very stressed out when I was told the 3rd op hadn't worked and they would try a 4th and it would be the last attempt. I went straight to my GP that day, burst into tears in his office (my husband had to come in to explain as I could hardly talk through all the sobbing !!) ... I couldn't recognise myself ... I kept thinking ..who is this anxious emotional wreck ? .. thought I was stonger. Anyway, my GP said counselling would be a long wait, so sent me off with Diazepam .. I only ended up taking 6 in total ...but boy,  they helped me sleep that night (and the night before the 4th result) !

 

However, I don't need them any more or counselling, and I feel much more like myself (I've even started laughing again Smiley Very Happy ..as my face also felt stuck in cry mode !)  and although radiotherapy will be no walk in the park, it's a physical thing to endure and I can cope with that.  I just want to get it all over and done with now.

 

My planning appt is on the 19th and the daily routine starts on the 28th ..all finished by 27 March. I've also been given Tamoxofin, so far felt no different on them but I suppose it's early days ..though my BC nurse said some women have side effects after the first tablet !

 

Being at work will keep you busy and help distract your mind hopefully ..as I know you will be counting off the days. One part of you will want the 25th to come quickly, whilst another part will be dreading it  ... yeah we can certainly kick-ass on this cancery cell sh*te ..how dare it interfere with our lives !!

 

Take care ..positive thoughts your way ..as always

 xxx

 

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS - I have done it again and typed a reply and it vanished, I’ve realised that I keep forgetting to hit the “I’m not a robot” button. So here goes again! I think it’s a new button or maybe it’s just on my iPad? (Technology not my strong point).

Please don’t apologise for the lymphoedema point, you have so much info coming at you from all directions that you can’t possibly retain it all. Thanks very much for the Cat Meffen yoga tutorial tip, I’ll definitely look into that. I’ve found that mindfulness has really helped me through all this.

Your comment about googling boobs made me laugh - I had typed something about that in my earlier message but had forgotten to retype it. You end up doing things you have never done in your life before 🤣!

 

I saw that you mentioned radiotherapy and the creams. I used R2 but R1 was out of stock everywhere when I had radio and my skin was fine throughout. I also used aloe vera from Holland and Barrett. Some hospitals are fussy about what you use, but it must be ok if some allow it. Many GPs and oncologists don’t seem to have come across R1 and R2 cream and I believe it’s quite expensive so you might have to fight to get it, from what I have heard and read.

Sending hugs to you. Xx

NJS
Member

Re: 4th Re Excision or Mastectomy?

Hi Stirts, 

 

It’s like you are in my head Stirts and know everything I’m feeling! My tears were more out of relief at a fellow human understanding all this crap but also happiness that there is some hope as you’ve proved it can be done.

 

Like you, I’ve been an emotional wreck but physically in good shape - keep forgetting I had an operation on Monday and have been at work since Wednesday! Being at work keeps me sane and gives me a break from everything. Finding out the 3rd operation hadn’t worked was the biggest blow to date emotionally. Like you I’ve done a life time of crying in the past few months. I’m worried my face will stick permanently on “cry face” mode. I’m starting counselling next week, I’ve been told by my new GP that I have PTSD now so really need to address this. It mainly centres around how I was ignored and not taken seriously as it took 2yrs to diagnose despite numerous trips to various Drs. 4 surgeries has also done me in, the GP said this is not normal to go through that and completely understandable to struggle with it. Been an emotional week but I feel I’m moving forward and taking back more control. 

 

What date do you start your radiotherapy? How are you feeling about that? Have you had the planning session yet?

 

Yours and Evie’s  messages have really helped this week, thank you. I’m certainly sprinting now to catch you up! Here’s to being warrior women 💪🏻👊🏻👯

 

Lots of super positive, cancery cell kicking badass vibes backatcha! 🦄🌈❤️X

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS

 

I hope that I didn't upset you too much ! we are in a very emotional state just now... I think I have shed more tears these last 3 months than I have my whole previous life !  It's not the physical side, as I have always felt quite well, it's the strain on us mentally... I don't think anybody can truly understand ( though those closest to us try their hardest) ..you have to walk a mile in my shoes and that's why I can empathise with you because I have done that walk and have just reached the finish line of this stage a wee bit sooner than you and I'm looking over my shoulder waiting for you to catch up !! ...and you WILL !

 

Keep going my dear and just think, this time next year, while we may not be millionaires ( as Del boy used to say :-) ), it will all be behind us and one way or another we will be back to our normal lives  ... this is just a blip in the road !!

 

You take care now and I am sending a million positive thoughts and wishes your way !! xxxx

 

 

NJS
Member

Re: 4th Re Excision or Mastectomy?

Stirts!

 

I actually cried reading your message yesterday, it really seems like we are doppelgängers and have been living parallel lives recently. You are the only person I’ve found that’s had 4 attempts at this, although I’m not happy someone else has gone through this too, it is a relief to know I’m not alone and am not going mad. Not a fun club to be in is it?!

 

I love your hamster wheel analogy, you are spot on. I’ve felt like someone just dumped a huge rock in front of me since September and I keep flinging myself up those gladiator style travelaters to get over it only to nearly make it but be flung back down to the bottom. It’s complete ground hog day and very hard to stay functioning with the endless cycles of waiting for surgery, surgery, results on constant repeat. It’s exhausting. I had the exact conversation with my Husband about there being no ambiguity this time and I’m finally only going to have 2 outcomes this can now be. Neither option is appealing but still progress and a way to move on and get closer to getting rid of it. As my Consultant said to me early on, “sometimes life’s a bitch”. I have to have the view some people don’t get a choice or go through much worse.

 

I’ll be thinking of you during your radiotherapy and cheering you on - wish I was you right now! Sounds like they are going to give you a good zapping! Make sure you treat yourself. I can highly recommend  the Elemis cleansing balm for a spa at home style facial treat! I’ve read drinking lots of water helps flush toxins and promotes cell regeneration. I’ve found drinking coconut water particularly good after surgery as it flushes the drugs out really well although I’ve spent a fortune on it! I have one of the Joseph Joseph counter water bottles so I know I’ve drunk 3L/day. Also been reading about what to use to help the skin not burn, seems there is something out there called R1 and R2 gel which is good, aloe Vera gel too. The french skin brand La Roche Posey also has an oncology skin product section. I’m sure you’ll get good advice from the radiographers though.

 

This is tough but you are tougher. Keep in touch.

 

N x

NJS
Member

Re: 4th Re Excision or Mastectomy?

Hi Evie,

 

Thanks for for your message, definitely happy I went for the 4th attempt. Now just got to play the horrible waiting game.....

 

Apologies, you did mention about your lymphodema risk. Great though that you are doing exercise at your pace. I can highly recommend Cat Meffan yoga tutorials on YouTube. They are free and you can concentrate on certain areas or do full body/gentle stretches. I’ve also found her guided meditations really helpful too, never been into that kind of stuff before but it’s certainly helped calm my head. The hospital staff are always so surprised at how chilled out I am before surgery! I’ve recently completed her “Yoganuary” programme where I did 31 days of yoga. Feeling very strong as a result.

 

I’ve been looking at breast reconstruction photos, got to be careful googling boobs! It’s good to get an idea but like you say it’s not a celebrity style boob job so I need to have realistic expectations. 

 

Will definitely let let you know how it all goes. You look after yourself in the mean time.

 

N x

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS

I typed you a long reply this morning but it has vanished - maybe I forgot to hit send 😂 ! So I’ll try to remember what I said.....

I’m really glad you went for the 4th re excision. It sounds hopeful from the amount that they shaved and from Stirts’ experience - Stirts, I’m so pleased to read that yours was successful. I think Stirts makes a good point that the surgeon wouldn’t put you through a 4th if there wasn’t a chance that it would succeed.

Good too that you are preparing yourself in case you have to have a mastectomy. Do also google some plastic surgeons’ sites and see some photos of breast reconstructions so you have an idea of what they look like - I know mine has photos on his website.

To answer your questions - no I haven’t tried Knitted Knockers, but I should do as I have heard very good things about them. I was given my prosthesis (a plastic/silicone one) by the BCNs at the hospital. I don’t like the material as it makes me hot/sweaty - so I really should do some research and find something better. That said it does give a good shape.

And re the yoga plank - I am in a slightly different position to you as I also had node clearance and as such am at risk of lymphoedema. My surgeon told me not to lift heavy things with that arm, and don’t do weight bearing exercises like the plank (I can use weights sensibly, just not my whole body weight). I believe the risk is far lower with a mastectomy only - but it would be a question to check. Also different surgeons have different opinions about what is safe and what isn’t. I have just started doing yoga so I do the exercises I feel comfortable with.

I will have everything crossed for you for a positive result on the 25th - do come back and let us know. And Stirts - all the best to you for radiotherapy in March.

Evie xx

 

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS

Reading your posts is like reading my own story !

I also asked the surgeon to take as much as he possibly could the 4th time and he took 2 shavings and both were clear. I never thought it would ever be succesful, so like you, I started to ask questions about mastectomy and reconstruction so that I was prepared. My boob still looks ok and the scar doesn't look like it's been opened 4 times so I'm happy with the final result.

I felt that I was on a hamster wheel and continually running through the nightmare of waiting for surgery, having surgery and then waiting on results so I REALLY know what you are going through and how anxious you must be feeling. I found the only way that I could steel myself to go for that last appointment was to think that no matter the outcome at least I be getting off that damned wheel and would be moving on whether it was mastectomy or radiotherapy. 

I didn't expect to get a good result and I did and I dont think that the hospital has seen anyone so happy to be told they are having radiotherapy .. I have my dates for 15 treatments and 4 boosts ..basically all of March. Afterwards the surgeon said to me "we always get there in the end" of course they never say that beforehand, but they wouldn't put you through all this again if they didn't think that there was a good chance of success.

I hope with every ounce of my being that you get a good result, please let me know as I will be thinking about you on the 25th ... my heart goes out to you ...you are not alone xxxx 

 

 

NJS
Member

Re: 4th Re Excision or Mastectomy?

Hey Evie,

 

Sorry for the silence, had a lot to think over. I really appreciate your detailed response, really helpful.

 

I decided to go for the 4th re-excision yesterday as I didn’t feel I had anything to loose and it was another chance to keep my breast, albeit a very slim one. I’ve started counselling to prepare me mentally for this surgery not working and having a mastectomy though as I’ve got to be realistic.

 

My surgeon says the implant gives the least effective cosmetic result and works best when people have a double mastectomy. I still think I’m going to try this option as I’m reassured by your experience here, I’m happy to hear you chose the right option and it’s worked for you. I feel personally I’d prefer this to being flat. If I hate it I’d ask to take it out and go flat.

 

Random question - can you hold a yoga plank or could you if you tried?! I’ll definetly take your advice about going on the smaller side. I’ve got used to this because of all the tissue already taken away from my surgeries. Which prosthetis do you use, I’ve been reading about the knitted knockers! Have you tried them? www.kkukciowix.com

 

4th re-excision results will be back on 25th Feb, for now just playing that lovely waiting game! Will let you know how it goes!

 

NJS x

NJS
Member

Re: 4th Re Excision or Mastectomy?

Hi Stirts,

 

That’s absolutely amazing news, congratulations! I decided to go for the 4th re-excision yesterday as I wasn’t ready to give up just yet. I know there is a very small chance of it working but today I feel very happy I’ve tried again and am pain free which is a bonus. It gives me hope to hear yours was successful. I spoke to my surgeon and asked him to take the maximum amount out possible before I’m left with a deformed boob. He did 2 shaves, he said he’d normally do 5mm but said he’d take it to 1cm. Even with the dressing on I can see I definitely have a decent amount of boob left. Hopefully it’s going to be a permanent fixture.

 

Are you starting radiotherapy soon? Genuinely so pleased that your surgery worked for you. Wishing you a speedy recovery and am sure you will kick ass on the next level just like you have at the surgery stage. Well done you for persevering!

 

NJS x

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS

I don't know if you have made a decision yet, but just to let you know that I had a 4th re-excision recently and it was successful .

..I'm glad that I persevered as like you I always recovered quickly

 If you have any questions I'm here xx

Member

Re: 4th Re Excision or Mastectomy?

Hi NJS

I’m very happy to answer as many questions as I can - as you say our consultants do this every day and don’t really understand our questions.

I was told that my particular implant operation has the same recovery time as a mastectomy without reconstruction. I also had nodes removed at the time so that probably extended my recovery time. I’m trying to think back.....recovery at first always seems slow, but then before you know it you are back doing all those normal things again. I think I was back driving about 3-4 weeks after my operation. I started going for walks as soon as I could after the op and those quickly increased in distance. I would have been cleared for the gym a lot sooner but I delayed starting that again as I was having radiotherapy (that was a personal decision rather than a medical one).

I really don’t notice my implant now, it was tight to start with. It’s odd at first because you don’t have any feeling in it. I’ll try to describe it a bit.....so it’s much more round than my left (“real” one), think of celebrities who have boob jobs (mine is a lot lot smaller though). I think a smaller implant would have made them more symmetrical. I could have further surgery, but I’m not inclined to so I use a prosthesis over my left breast to even things up. Ask your surgeon if he/she has photos of operations they have done so you can see - that’s something I wish I had asked at the time but didn’t think of doing so.

As I had nodes removed I am at risk of lymphoedema, but I think the risk with a mastectomy only is far far lower - maybe a question to ask your consultant. I have to take sensible precautions to try to limit my risk.

Recon is a very personal decision, many ladies choose to stay flat, and it is important to others to achieve the best possible symmetry so they go for the tissue options. I chose immediate recon because I wasn’t sure how I would cope mentally with one side flat, and I chose an implant because I wanted the shortest operation and recovery time. For me it was the right decision and I would do it again - except I’d have a smaller implant!

I hope that helps a bit, but please feel free to ask me as many questions as you like.

Evie xx