Mastectomy V Lumpectomy question

[Cocolily]

Thanks Hazel… So glad you have had excellent news. We don't hear it too often so when we do … yipppeeeeee
Hope you have been celebrating with your family… Its really hard I am really sure thats what I want.. just have to wait and see if they will let me. xxx see you soon

[Hazelr]

Hi you, just reading all your messages re op choices. What a hard decision for you to make, I am very relieved I have had WLE following my complete response to chemo (tumors gone from breast and lymph ) but I was really sure I didn't want mx. I think you should listen to your intuition and if you want an mx then have one or even double if you want and they wil let you. I know it's hard but if I have learnt one thing over my life it's listen to your inner self, it will be right. I hope we all make the decisions we can live with as I don't think there is a right and wrong way through this, there are too many stories of recurrence and secondaries even after double mx or after WLE so who really knows? That isn't a helpful comment but the way I feel at the moment. Good luck everyone xxxx

[Cocolily]

Thank you everyone for your experiences and comments. I am starting 2nd chemo next week. I am booked to see the surgeon between chemo 5 and 6 to discuss operation.
Next week I see my oncologist just before chemo and will bring it up then again as I know they have weekly meetings with surgeon re all patients. I am going to try to be more assertive in my meetings as I always gets upset. I have never been given the choice of a MX and I have asked for one. Just feel after 2 failed WLE that I should have a choice. Thank you all again and it is really helpful to me to read all your stories xx

[somerset]

I think it is probably best to go with how you feel and I thought the NHS would do mx (especially after two failed WLEs). I started with intermediate DCIS on one side and I wanted mx but was persuaded to try WLE because the consultant was keen (and as everyone below has pointed out long term outcomes are similar). My feeling was that if margins were not clear you would end up with two ops rather than one. Also saw some research about likelihood of future mammograms on WLE side leading to more biopsies etc because obviously they would want to check any sign of problems. As it turned out did not get clear margin at which point I opted for mx. Afterwards I was told this was a good decision because mx revealed extensive areas of surrounding cells were in the process of changing so unlikely there could ever have been 'clear' margin. A few months later (largely through luck) high grade DCIS was found in my other breast.This time I chose to go straight to mx - again proved to be a good decision as mx revealed invasive cells which had not showed up on mammo/u/s or biopsy. Nodes were clear but had to have more treatment to try to prevent recurrence.

I did have confidence in my surgeon and I understood why he wanted to try the WLE but obviously with hindsight I wish I had gone with my gut feeling and only had one op not two on the first one - he was happy to go straight to mx on the second one. Probably also shows how hard it is for the medics to be sure what is going on - both times the results of the mx were unexpected.

Best wishes with your decision Cocolily - hope you can get what you want. Good luck with the ops Tibetone - I found out at a late stage that there is a considerable history of breast cancer on one side of my family. If I had known at the time of first diagnosis I would have wanted to do what you are doing. I did not find ops/recovery too bad (I did not have reconstruction) so I hope it goes well for you too. I don't have BRCA either but like you they think there is a genetic link and I have just been asked if I would be happy to participate in a research project to try to identify more rogue genes - let's hope it succeeds!

[Nenya]

I think they will do what's best for you. They would have given you a mx the first time round if it wasn't appropriate. If the evidence says that WLE will be as effective, then that's what the will do.they won't play about with your life. It's a panel of people do your planning. I had WLE and a friend of mine thinks that's worse than her mx, but I feel so lucky as I think the recovery must have been easier xxx

[TibetOne]

Hi

Thought I'd add my experiences here too.

I was diagnosed in Nov last year with high grade DCIS about 6cm x 3cm and another area nearby of LCIS.

One consultant told me it was in the hand of God whether it would recurr and talked about 5 year survival rates.....

Another told me that with the high grade DCIS and LCIS I'd a 50% chance of cancer in the other breast which seemed too high for me. He recommended double MX as this would reduce my risk to 5%.

After much thought, research and consultations have taken the decision to have double MX in 3 weeks time.

My reasons were that I was concerned re getting clear margins first time round etc,how much breast would be left and also chances of recurrence. I decided I didn't want to keep chopping away to get clear margins and also as there is strong family history I was concerned about recurrence. Despite testing negative for BRCA the consultants felt it was gebetic, just a question of finding which gene.

Felt comfortable that this is the right way forward for me but now the day approaches I'm having wobbles.

Know I am lucky it is early, treatable and have the option to choose double MX but absolutely dreading the operation and recovery.

Understand the worries about getting clear margins and felt this was my only option. But ask me on 29th May when the op has been done. Love to you all on this journey  xxx

[Yvie178]

Hi had mx and immediate recon with strattice privately.  However this was mainly because the strattice is not available on NHS in Oxfordshire.  My NHS appointment for surgery was 3 days after my private op.  The plus points from what I have seen of NHS vs Private are as follows: 

1.  private room - I spent 3 nights in hospital - and was able to sleep.  This is the main plus!

2.  The care whilst in hospital is good.  And your surgeon will visit daily even at weekends!! 

3. Visiting is whenever you want and as many as you want or not! 

4.  Follow up appointmentswith surgeon  can be on Saturday - very helpful when you are working.

The not so good things:

1.  Aftercare - there is no access to a Breast Cancer Nurse.  There was a Specialist Nurse but she was part time so was hardly available.  Once you are home there is no emotional support, no one to ask questions etc. 

[Cocolily]

Hi .. I'm in bed on my phone so can't access pm. Tomorrow I will look from the computer downstairs x

[kitten_mad]

Hi Cocolily - I have sent you a private message x

[Weeannie1]

I was with the NHS. I used the breastcancer care helpline and found them to be fantastic help. Wishing you all the best x x

[Lucy_BCC]

Hi Kiki
Do call to talk this through, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Take care
Lucy BCC

[saffronseed]

i was NHS too - so chose wle against my consutlants wishes (but he was right in the end) so with hindsight and the knowledge I know have i would have gone for Mx first time round if it happened again.  I do think you can say that you would like an Mx rather than wle -but then it all depends on whether you would like reconstruction or not - have you thought about that?   You can chose either immediate or delayed.  Sometimes an emmediate is not an option due to your hospital/surgeon etc and/or you may have to have rads and then they sometimes think its too much of a risk.   If you its delayed then you will have to go on a Plastic surgeons waiting list and they usually like you to wait a few months for healing etc.   I would talk to your BCN if you have one and discuss your options - but yes the helpline here will be able to tell you what you should expect and what the NHS has to deliver.    xx

[Kiki2]

I was with the NHS.

[Rattles]

Hi Cocolily,

I'm sorry you are faced with these worries about your treatment.

Why not call the Helpline at BCC to talk your dilemma through? I'm picking up you would prefer a mastectomy? One of the very first things I asked was whether a mastectomy would increase my risk of survival. I was advised that there was clear evidence that a WLE and rads was just as effective as a mastectomy. Not all women are lucky to be in this position.

In the end, I did have to have a mastectomy and live with long term pain as a consequence. I'm just throwing my experience in as something for you to consider. Right now you are inevitably very worried by your recent cancer diagnosis - it's a scarey time. But you will get through this.

Good luck with your next steps, Rattles x

[Cocolily]

Hi everyone and thank you all for your thoughts and comments. Do you mind me asking if you are NHS or private .. Not that it makes a difference with the level of expertise the surgeons use but I do think you have more choice on your treatment when you are private. From the beginning of this journey I wasn't given a choice of a MX even though I vocally said I wanted one. I still think at the end of my treatment they will give me a WLE even though I would I think rather a MX. In my head I think I feel I have less chance of the cancer coming back even though they keep telling me it's the same in evidence that it won't ! Anne I'm glad they listened to you and you had a say in your treatment. Does anyone know if I am allowed to choose a MX as they give me the impression on my meetings it's not up to me. I don't want to sound negative about the NHS I really don't as they have treated me quickly etc but I just want a choice in my treatment plan.

[Kiki2]

Hi Crocolily, sorry to hear of your dilemma, it's a difficult one to decide, I was diagnosed with DCIS and told lumpectomy or mx would be necessary but in the end further tests proved that the amount of DCIS and position meant it had to be mx. I have to say that a large part of me was relieved that that decision was made for me because I'm not sure how well I would have coped with WLE from the point of view of fear of recurrence,even though it seems there is probably no evidence for this fear. Because of the nature of my cancer and the fact that they were fairly sure I wouldn't need further treatment, I opted for immediate reconstruction. The surgeon has made an excellent job and the fake one looks good and in a bra matches well. (Obviously the natural one droops in comparison but I can live with that!) it was reassuring to wake up after op and still have a breast there. I am now 10 wks post op and recovered well but there is still some pain and fullness in the recon boob which I think will continue for some time, judging by the experience of others on here. Good luck with your decision. X

[Weeannie1]

Hi Crocolily. I really feel for you, because I too have been in turmoil over whether I should've had a mastectomy. My own personal demons have led me to being placed on an elective waiting list for a double mastectomy with immediate DIEP reconstruction. When I was first diagnosed, I requested a double mastectomy but was told that I would have to wait up to two months for my op. I just wanted the lump gone, so I went with their recommendation of WLE and had to have a second op to achieve clear margins. I went on to have chemo and rads and was fine going through treatment, but at the end of it I fell apart. After discussion with my BCN nurse and surgeon, we decided that its best I have the mastectomy to allow me to move on. I'm not saying that you'll feel the same, and my team have stressed that the mastectomy has the same chances of secondaries appearing as the treatment I have already undergone. But my surgeon did say that local recurrence is slashed to 2% from the 13% I was quoted when I had my WLE. My team also made the valid point that there's no point in treating your body if your mind remains in a state where you can't move on.
You can def have a mastectomy after chemo, so there's no worries on that front. Whatever your decision, I wish all the best through your treatment. Ann x x

[saffronseed]

it is a hard one to advise on as it is so personal.   I am aware that the stats say that as long as the cancer is cut away and clear margins then WLE and MX have the same recovery/reoccurance rate so its not simple or straightforward and a lot depends on the stage and type and aggression of cancer too  and the size of your breasts. - so there is no easy answer.   My initial gut feeling was to go for WLE as i wanted to preserve my breast and nipple - that was against my surgeons advice who wanted to go for Mx straightaway.   Anyhow the inevitable happened and no clear margins so the second time round I went for Mx -  He got clear margins but my tumour was 9cm I then went on to have chemo.    You are having chemo first to shrink the tumour so your tumour will be much reduced and another WLE is possible and you will keep a reasonable body shape.  At the time your thoughts are probably on the cancer and get it out of your body but you do also need to think about the future and what your breast will look like and will it be deformed?  The questions you need to ask yourself is will you be content with a WLE or will your be questioning yourself thinking that you should have had a Mx for peace of mind?   The other question is about body image - how important is it to you?   If you go for a Mx you can have a reconstruction but with a WLE this is not the case so again what will your breast look like after 3 WLE's.  I had a delayed diep and am so happy with my new breast - it was 18 months later but well worth the wait.   Good luck to you and hope you get lots of responses to help you on this xxx

[Cocolily]

Hi Ladies
I have a question and bound to be lots of opinions but here goes. I have had 2 WLE (lumpectomy) and still no clear margins. I have now started chemo and will be operated on again after chemo finishes.. My dilemma is do I have another lumpectomy - can I have one after chemo ? Or should I have a mastectomy ? If I have a MX is it more definate the cancer will not come back .. What I'm asking are there any people who have had MX and cancer returned .. I'm just worried cancer will come back if I have another WLE .. Thanks in advance .. I want to hear from real people going through this otherwise the surgeon says evidence has shown ....