Mastectomy after 2 lumpectomies?

[Scooty]

Hello there, Jo.

Firstly, thank you very much for taking the time to think of us and to ask the question, that’s very touching.

The operation went very well, it helps being first on the day and getting out same-day that’s for sure, and not needing anything fitted for draining was also a plus.
Nine days afterwards she got the whole dressing taken off - it was irritating the skin at the periphery - and the area has healed so very well in such a short time. Since coming round from the operation not so much as one paracetamol has passed her lips, which I’m amazed by. The whole thing has really gone tremendously well and she is feeling very upbeat, as she has throughout all of the treatment since March in fairness.

Seven weeks post chemo and a soft, elfin hairstyle is in place, and it really suits her, beautiful.

2020 has been a quite terrible year all round, but having the chance to support her and marvel at how everything has been handled with such positivity, has been a privilege actually. Going a bit Gwyneth Paltrow now, and I’m biased, but I’ve found Julie to be both awesome and awe-inspiring, no other way to put it.

This community, and another one I’ve followed also, demonstrate the power of experience, empathy, education and humour. The vast majority of folk undergoing this are such great supports for one another, it is so valuable and encouraging.

Thank you for all your help.

Scott

[Jo22]

Hi Scott,

I just wondered how your partner is doing? Well I hope after her surgery.

Take care and feel free to ask for advice 🙂

Jo xx

[Evie-S]

Hi Scott - please feel free to ask any further questions if you think of any, during the next week or afterwards. Best wishes to you both, Evie

[Scooty]

Hello Evie.

Thank you for conscientiously following up! Very interesting on the radiotherapy point - still a very real possibility- and the expander piece.

A week today everything comes to a head, so let’s see.

Thank you very much for all the feedback, really kind of you.

Thanks and all the best.

Scott

[Evie-S]

Hi Scott - I am so sorry, I have just found this message sitting in my drafts, I have no idea how that happened. I’ll send it now in case you are still watching this forum. Evie 

I chose immediate implant because I wanted it all done at the same time, so I didn’t explore a delayed reconstruction. One thing I was warned about with an immediate reconstruction with an implant followed by radiotherapy is the risk of something called “capsular contracture” where the radiotherapy causes the implant to harden. Some surgeons won’t do an immediate implant reconstruction if radiotherapy is to follow for that reason, but I had an implant on the top of the muscle, rather than underneath, in some sort of sling thing and that was supposed to help reduce the risk so my surgeon was happy to go ahead.

I believe that if you delay reconstruction you would have to have a temporary expander put in to keep the skin stretched enough to be able to put in an implant later - but you might want to check that.

What options has your partner been offered? I think your question about the negatives of delayed reconstruction is a good one, and one you should follow up with the medical profession.

I’m glad your partner is being medically cared for well, but all too often people say they can’t get the emotional and other support they would like, especially after treatment finishes. Some people feel very much abandoned once they no longer have appointments, that’s a very common feeling - I felt like my support blanket had been taken away. My best wishes to you both, Evie

[Jo22]

HI Scott,

Sorry to hear your partner is going through this but great that you have found this forum!

I had 2 lumpectomies in July & August this year for IDC grade 3 tumours & both of them failed as there was cancer found in the margins.  This was mainly DCIS which was almost invisible in all the scans I had. I now have to have chemo and a mastectomy.

As Evie says earlier the team will always choose the least invasive treatment that they can. In their mind if they can get away with lumpectomy it is best as it is a much easier surgery to recover from. If you are being offered both you probably do need more expert opinion. 

When I have my mastectomy next ear I have chosen immediate reconstruction but I have a friend that chose to delay in case she changed her mind. It is such a personal choice and not an easy one at all.

I wish you and you partner well and do always come back for more advice or call the helpline.

Jo x

[Scooty]

Thank you for the kind words, Evie.

We’ve found the support locally to be patchy, not the operational care just the support (it’s TNBC so the turnarounds have been exceptional in these times). I will mention the number here, or call it myself.

Can I ask why you decided on reconstruction immediately? We’re hearing it’s an open-ended option, but is there a negative impact of say leaving it 6 months as opposed to at the time of the mastectomy (aside from double op)?

Thanks again.

Scott

[Evie-S]

Hi Scott - that’s really kind of you to have come on here to try to find out some information and answers for your partner. Can I please start by reassuring you that no question is too basic/too big or too small. This is a safe place without judgment, so please feel free to ask any questions - you can even ask about how it feels post mastectomy if we can help.

I’ll try to respond to your questions in turn:

1. I went straight to a mastectomy, so I’m sorry I don’t feel qualified to advise on the difference between a lumpectomy and a mastectomy. I’m sure others will come along, or you might like to call the lovely nurses on here (number at the top right of this page). I had a reconstruction at the same time as my mastectomy, I think I was not allowed to drive for about 3 weeks afterwards. The early days felt slow but it wasn’t too long before I started to be able to do things again.

2. I had a mastectomy and also radiotherapy (and chemo), and I know others have had also had both. But this is also a very good question and maybe one for the nurses too.

Another option is to call your partner’s breast care nurse at the hospital, or even try to speak to one of the consultants if you can. Some people choose to go along with what they are told, and others ask lots of questions - that was me, I wanted to find out everything I could. So I’m really sorry I haven’t been more help with those questions, but do feel free to ask anything else.

My very best wishes to you and your partner, it’s really tough being the person supporting too, so make sure you look after yourself too. Evie

[Scooty]

Hello Evie and others.

My partner is now looking at the very prospect encapsulated in the email title. Everyone is different, appreciate that, so won’t ask any questions about how it feels post-mastectomy, but wondered if you could please advise on these two?

1. Is the mastectomy operation hugely different to lumpectomy, in terms of time, recovery, generally, in your experience?

2. Do you happen to know if having a mastectomy reduces the requirement of radiotherapy? From what I’m reading it does not eliminate the need, but does it reduce it?

Apologies if the questions are basic. My partner has had two surgeries and chemo, the thought of radiotherapy on top of a mastectomy weighs heavy.

Thank you,

Scott

[Savana]

Thanks.Evie for helpful advice. Il be in touch as soon as feel up to it. S.  X

[Evie-S]

Hi Savana - I’ll see if I can help with your questions.

Yes I think the recovery times you have been given are good guidelines, but as always the best advice is to listen to your body too and don’t rush things. You are also right, everyone is different. You will need to give your body time to heal and recover. To begin with you will be given arm exercises to do, and it really is vital to do them regularly just as you are instructed in order to get back the full movement in your arm again. I’m sure they will tell you to build up slowly, don’t start with 2 hours of gardening/housework etc., but your body will soon tell you if you overdo things. If you have problems at any time, do speak to your nurse/team and they may send you for some physio just to help things along - I had a couple of sessions.

The drain is more of a nuisance than anything else. I would suggest getting some sort of shoulder bag to carry it in so you don’t catch it when on the loo etc. You could use any bag you have/make something or I found mine on a site called Drain Dollies https://www.draindollies.co.uk you could look and see what I mean. The drain site is covered with loads of dressing so it would be hard for infections to get in - but do ask your team any questions like that, they are good questions and they will reassure you and help you to minimise infection.

You ask another good question about how long implants last and I don’t know the answer, even though I have one! It is on my list to ask at my next check up. I don’t remember being told that mine would need replacing, but I have since read that they don’t all last forever - or maybe I just zoned out at that point and didn’t want to hear about future replacements! If you do find any more answers, I’d be interested to hear.

I wish you all the very best for your op on Tuesday and for your recovery. Please do come back and let us know how you get on, or if you have any questions or concerns at all before the op. Hugs, Evie xx

[Savana]

• Hi Evie,nice to be in touch with you. I'm lucky I'm not having radio or chemo, nor any
• Lymph nodes removed.
• Presuming  of course dcis has not become invasive since my lumpectomy I
• had in January. How long does it really take before you feel OK to lift, do housework,move arm etc
• where the op has been done? After 3 weeks but still be careful for up to 3 months .
• That's what I've been told. But everyone's different,arent they. I'm concerned about the drain
• I l have in me, never had 1 before. +concerned reg infection. How did you get on? Also 
• is it true implants don't last until you re about 90 years old,if we are lucky to live that long
• of course. I've read that they have a lifespan+will need to be removed eventually as they won't
• last 30 years. I must read up on this,i wasn't given much info reg them. Good luck in your decision
• also Jo, I let you know both know in 2/3 weeks how I'm feeling  after op,if you like?It's on Tues. X
•  

[Jo22]

Thanks Evie, I've chatted it through with a number of people now and understand that the team are just offering their best advice, they're just not very good at delivering it! 

Thanks for all your advice 🙂 xxx

[Evie-S]

Jo - I’ve seen that you’ve started a new thread about chemo and had some great replies. It’s your body and it’s right that you ask questions. Some people don’t want to know, but others do - it’s very personal. I had a very patient surgeon and oncologist and asked lots of questions. I am sure you could ask for a second opinion too. All the very best to you for whatever treatment you have and for making decisions. Xx

[Jo22]

Thanks so much for replying Evie.

Unfortunately I got my oncotype result and they are recommending chemo. Had my first oncology meeting today after all the surgical ones since June & I was not convinced but think there's very little choice.

Savana, I really hope you get the result you are hoping for.

Evie, thanks for all your advice. I'm disappointed with their rational for chemo seems like its a conveyor belt of "if you get this, you get that" no thought to other options.

[Evie-S]

Hi Jo22 and Savana - I don’t mean to intrude on your chat, but if either of you would like any more information, I am happy to answer any questions as I had a mastectomy and implant, which was a “pre-pectoral” one. I had radiotherapy afterwards, and had chemo before my surgery.

Savana - body image is important to some and not others, whatever age you are, it’s a very personal decision. From what you write, it sounds like you are taking the right decision for you - but if I can help in any way or discuss things further do please ask. Or if you just want to chat about your fears of needles/operations. This is what this lovely forum is for - to help and support, without judgement or needing an explanation.

Jo - I understand your concerns after you have already had 2 ops, but from what I have read this is not unusual when surgeons are trying to avoid a mastectomy. But frustrating for you when you asked for this in the first place. I was same age as you at diagnosis and I wanted to have reconstruction.

My very best wishes to you both as you go forward, big hugs and please feel free to ask any questions at all. Evie xx

[Savana]

Hi again, yes it's an implant. Pre pectoral I think it's called.Il have to do more research 

as I was told it's the most up to date very expensive implant. BUT I hope I'm doing the right

thing,should I ,at MY AGE even bother with this? I still want to wear nice tops,not too tight

or loose, in the summer. So I at least look a bit womanly+as though I got a bit of a cleavage+a wear

padded bra as well. Otherwise, as I'm so trim+athletic looking elsewhere ,+as my breasts are so unfairly

small,Can't I at least feel good about myself for a few more years until I retire+shut myself away.? 

But I'm so anxious,paronoid, scared, +I being late for menopause,just started properly 6 month ago,

is adding to me being indecisive,but it's all planned with hospital now,unless I back out. I'm so needle

phobic, scared of operations. scared in case dcis has spread. I've told doc not to take out lymp node,it's just

another thing IL have to recover from. I shouldn't complain ,should I ,some ladies,like yourself go through 

chemo also,+radio, +far worse.

[Jo22]

Hi Savana,

Yes agree it is worrying not knowing if it is going to become invasive or not. I was having a mastectomy but they did my oncotype test and the results can=me back yesterday so i have to go for chemo first. I'm gutted as it's the only thing I didn't want BUT i know it is the right thing to do. 

I hope your surgery goes ok. Have you decided what type of reconstruction? 

Jo xx

[Savana]

Thanks.Jo22. I'm 61!  Masectomy in 10 days time+reconstruction at same time. I presume 

docs can't tell if or when DCIS will be invasive,. Mine may never do so but then again it may.

It's the worrying what ifs going through your mind. So if I have breast removed+hopefully

dcis hasn't become invasive since lumpectomy op I had in Jan, then at least no more 

worries as if it did get invasive I'd have to go through extra trauma of chemo,radio etc.

So what are you having done Jo?

[Jo22]

Hi Savanah,

Oh sorry to hear your DCIS has come back. I guess I feel like I'm having such bad luck as this is the 3rd attempt to get all the IDC & DCIS out and I'm only on the first occurrence. But I know this can be the case with smaller breasts I am 34D.

I think it is wise to remove the DCIS if you can then the risk is less for it spreading in future. How didi they predict 50/50 I didnt think they could predict that at all. Have they recommended reconstruction or have you decided against? I am only 48 and still would like to have two boobs so have been recommended the implant. I'm just not sure I trust my team now after two bad ops.

Hope yours goes well and you recovery is swift and trouble free xx

[Savana]

Hi. Jo. I'm probably bit older than you ,but I had a lumpectomy 10 years ago. Now the DCIS has returned

in same breast, I had another lumpectomy in January this year. Doc couldn't get all the dcis out as I'm small

breasted ,+radiotherapy won't be much use.  There was n clear margins this time. Doc recommends mastecomy,so I'm due to have op in 3 weeks time. 50/50 chance dcis may become invasive. 

I may have an unnecessary op,it may not become invasive till I'm 80,by which time I may not care.

I hope I'm doing the right thing.  Savanah

[SaskiaE_BCN]

Hi Jo22,

Sorry to read your post, this must be a frustrating time for you. You are welcome to call our helpline and speak to our clinical nurses for support and information. They are available on 0808 800 6000.

Sending you our warmest wishes from everyone here,

Saskia 

[Jo22]

Hi All

I have had two lumpectomies on one breast to remove IDC and some DCIS. As the 2nd surgery didn't have clear margins they are recommending mastectomy. I asked for this right from the start but they didn't recommend it. Now I feel like I'm back at square one. Has anyone else had this?

Thanks

Jo