Posted on behalf of new user Kim.
Jo, Facilitator
For the last week I have found your comments and experiences very helpful has have just been diagnosed with grade 3 Ductal Breast Cancer. I am really looking for some advise on the decision I have to make masectomy with possible reconstruction later if I want it. Or wide local excision which they say they won’t do reconstruction as I would not get a good outcome. Help please do I have the masectomy or live with a strange shaped breast. I am due for surgery on 4th May so anybody at similar stage to me would like to exchange thoughts I would love share.
Kim xxx
hi kim,im qite new 2 this also i have invasive ductal like u.i had wide local excision monday with sentinal node removal at same time.when i was 1st diagnosed,my bnc said it was my choice whether to have mx or wle.she did say that in my case mx would not give me a better outcome than a wle.like she said,if u had a lump in ur leg,u wouldnt chop ur leg off!with wle i dont think generally u need recon?i certainly dont.boobie looks the same.obviously it will depend on where in breast the lump is but they dont call it breast conserving surgery for nothing.anyway,gather all the info u can,call the bcc helpline with any questions u have.best of luck 2 u and welcome to the site,been a godsend for me this last month alex xxxx
I had invasive ductal, and decided on a mastectomy.
Mostly for peace of mind, I wanted to be sure that it had all gone, and that there was no (or very little) tissue for anything nasty to grow in if it came back.
Also because I only wanted one operation. I’ve known or heard of too many women who had WLE, but didn’t get clear margins and had to have more surgery.
Also meant that I didn’t have to have rads, and that was a biggie for me as the hospital is over an hour away. That return journey, every day for 5 weeks was not appealing.
I’ll probably get recon done later. I’m not that bothered about having a uniboob, but it would be nice not to have to worry about bending forward and flashing the falsie due to a dodgy neckline.
Hi Kim,
I had a WLE and a sentinel node biopsy (to check lymph). It was only a day surgery and yes, I had to have a re-excision because they didn’t get a clear margin first time (another day surgery) but I have just been out sitting in the garden in a bikini and honestly no one would know even then that I had had bc. Yes, I actually have a 2.5 inch scar from bottom right side towards the nipple and there is actually a dip where it is (incidentally my surgeon says after rads they can lipofill this - suck some out of my thighs and fix the dent! so not exactly recon but if you are unhappy at losing a bit of the breast it is possible to improve this later on).
For me this was the right choice. If I had needed an mx, I would have said yes like a flash, my mother had an mx and it didn’t really interfere much with her life but I was told that medically, in my case, mx = WLE +rads and both had the same prognosis. I’d rather have a scar (which has pretty much faded already only 8 weeks after surgery) even with a slightly flat bit unless medically it would have been better for me to have had an mx.
I know others prefer the safety of knowing that all the tissue has gone, I tip the other way provided it doesn’t pose a greater risk xx
Kim - I think a huge amount depends on where in your breast your tumour is… and so what part of your breast would be removed with a wle?
For me, the decision to go for mx was less about cosmetics than a real urgent need to just ‘get rid of it’… but I am glad I made the decision I did. My tumour was 3.2cm, and the position it was in meant that my surgeon was very borderline about whether she would have advised a wle in any case… as it was, I didn’t get great margins with a mastectomy, so I know I would have been recalled if I had had a wle to start with.
Also, my lump was on the cleavage side of my breast, at the top, and would have left an enormous hole in a very obvious, prominent place. If the ‘damage’ had been underneath, that would have been less important - as my main priority is how my boobs look when dressed, I’m lucky in that I’ve been with my partner for over 20 years, and he couldn’t give a stuff what my breasts look like, as long as I’m around.
One other thing to consider, and this is advice from a friend who had a wle, and rads after - she found that she had so much hardening and scar tissue post surgery and post radiotherapy, that she really doesn’t know what she is feeling now… whether it is ‘normal’ for her, or if it’s actually another lump, and in retrospect she wishes she had opted for mastectomy. I’ve seen her boob (trading scars!!) and it honestly looks fine, a bit dented, but perfectly breast like, so it really is the anxiety of possibly missing a future lump that upsets her… not the cosmetic detail.
It’s a really tough one to decide on your own. Recon can look great, but will never have the sensation of a breast… so ultimately I suppose it comes down to holding on to that… or lopping the whole lot off and starting again, perhaps for peace of mind.
Good luck, whatever you decide.
xxxx
Hi Kim
Your choices shouldn’t be limited to either WLE or a mastectomy. I had a 3cm tumour in the top of my breast which would have left a badly misshapen breast if it had been removed as a WLE. My surgeon therefore recommended that the lumpectomy should be combined with a breast reduction and lift type operation - a classic “boob job” - plus moving some tissue around within the breast to compensate for where the tumour had been. I had fairly large breasts (40D) so this was possible for me, it wouldn’t have been viable with small breasts.
I am delighted with the result, I now have a smaller but natural looking breast which is remarkably pert for a woman of 51. I also had the other breast reduced to match. The only thing I would do differently is that I would have had the other side done at the same time rather than living for a while with a mis-matched pair, which I found very upsetting.
Sarah x
Sorry to add another idea to consider, but some people who have a lump that would leave a very mis-shapen breast if removed straight away had chemo first to shrink the lump, and then WLE and rads, so the breast is conserved.
That MIGHT be an option for you, but your surgeon might say that because of the grade of your lump, chemo would be over-treatment. It might be worth going through all the different options and the order different treatments are done with your breast care nurse so that she can explain why some options have been suggested and others haven’t, as each person’s treatment is designed to treat the individual cancer.
You’re at a really hard place at the moment, but know that you are not alone, even though it feels like it.
Good luck
CM
x
Hi Kim, I had non-invasive DCIS, and had a WLE initially, this was about 1 1/2" above the nipple. When the swelling had gone I was left with a breast that was around 1/3 smaller than the other one (I was 38c, aged 49), and it looked as though it had been lifted while the other breast flopped around 3" lower down. This didn’t bother me too much, but I was then told that the area of cancer was much bigger than expected and recommended mx because of the high risk of recurrence. I had mx (bilateral because of family hx and lifestyle) and I don’t regret that at all. I’m not having recon at the moment, and almost certainly not at all. Initially I asked for immediate recon, but was dissuaded by my bcn who said that recon needs a lot of thought and commitment, and that you have to be prepared for it to fail. I think that was good advice. All of this has to be your own choice, but it’s so hard to make a decision when you’re shocked and upset from the diagnosis. I hope it all works out well for you, Lynne xx
if this is any help I had extensive DCIs and as a consequent had a mastectomy and a DL recostruction at the same time 3 months ago. It all happened really quickly and my main aim was to get rid of the DCIS and to reduce any chances of further spread. Pleased to say sentinel nodes were negative and I have no need of radiotherapy, chemotherapy or hormone treatment. Recostructed breast is certainly smaller but with supportive underwear ( shaped cups in bras etc) does not really show. Back still feeling tight at times and I had a rather large seroma but that cleared up after about 6 weeks and regualr drainage. Trying to keep doing some exercise but overall feel well and optimistic
Hope this helps
Posted on behalf of new user Kim:
Thank you everyone for there comments they are really helping this web site has made me feel so much more positive than my first dark days last week I am still not sure what to do yet one day I think masectomy the next I think WLE my BC has been graded 3 and shows 2cm on mamogram and 1.3cm on ultrasound it is on right side of right breast I am also about 36C bra size at the moment. I saw two surgeons one thought WLE and moving tissure around would be an option then the second surgeon said he did not think this would give a good outcome and recommended masectomy he was recommending this purely from a cosmetic point of view after. Although I don’t think I would bother with reconstruction anyway. However the surgeons I saw will not be the surgeons preforming the op so do you think I should ask for a second opinion with the surgeon who is doing the op. as he was on holiday.
My Husband says it’s never a good think giving me choices in anything!!!
Love to all
(K)
Hi Kim, this is such a difficult question! I had a WLE on 29th Dec but didn’t get clear margins so had a re-excision on 24th Jan. My tumour was above my right nipple and although both ops left me with a small dent, to all intents and purpose it looked normal, especially in a bra. I was told on 11th Feb that I still didn’t have clear margins so was advised to have an mx, which I did on April 4th. Although I was very happy with the results after WLE and felt confident with my appearance I feel, with hindsight, that I should have had an mx back in Dec and avoided all the time in hospital, general anaesthetics and recovery time off work. Thats hindsight though and I would have liked to have kept my breast. I haven’t had a reconstruction and probably won’t, I feel I am more likey to notice any reccurence without and survival is the most important thing to me now.
C x
Kim
2nd opinion wins every time. Absolutely no way opt for mx if not needed. Reconstructive surgery is not always successful and your options may be limited. A strange shapped boob will be easier to live with than none at all and in any case there ARE things that can be done to re-shape you.
Do you have a breast surgeon or plastic? If breast then seek a 2nd opnion from a PS; they work much harder on aesthetics and whilst your immediate thought might be to “be rid of the cancer” you will think differently possibly in the future.
Please PM me if you want to talk further.
CM
You want to speak to the surgeon who will be doing the operation - and then you will be certain that you are happy with whatever decision you make.
Mx is a frightening thought… but many women find it really does not bother them at all being mono-boobed - myself included. I’m 42, and am perfectly happy with one boob and a decent prosthesis. Having said that - I may go for recon one day, or I may not. Haven’t decided yet! But, if you can avoid the dilemna of whether or not to reconstruct, then I’d say that would be a good thing - if only for the fact that recon means more surgery/more hospital time etc down the line. If you can get a good cosmetic outcome with the original surgery, then that makes perfect sense.
But - this should be undertaken at least as a joint effort between the breast surgeon and a plastic surgeon - as there are two different surgeries going on silmultaneously. Your breast surgeon is experienced in cutting out cancer - you need a plastic surgeon for a good cosmetic result. Unless they are skilled in both…
Have I confused you more? I didn’t mean to!!! I’d say, if you can, have it done in one go - wle and shift about, but if you can’t, don’t despair - mx really is not the end of the world.
xxx
In my case the breast surgeon who I was first referred to when I found a lump was the same surgeon who did a beautiful job of the breast lift and reduction combined with the lumpectomy. She does the same type of operation for NHS patients as she does for private ones. Maybe I struck lucky.
Mine was also a grade 3 with lymph nodes involved. I was offered a WLE or mast. and asked the surgeon what he would recommend if it was his wife. ‘A WLE’ he said without batting an eyelid. I later asked my breast care nurse what she thought and her answer ‘a WLE because IF you get a recurrence in the same breast it will be another lump, which is easier to treat than a recurrence after a mastectomy which can be on the chest wall’.
Nearly three years on I haven’t regretted my decision. The lump was in the cleavage, and it does look a bit mangled, but nobody can tell as long as I wear clothes that aren’t too low.
Good luck with your decision.
Mal
I’ve had WLE twice. I’m waiting to see if i need a 3rd for clear margins. My lump was 2.5cm and underneath my breast and also near my cleavage. I’ve been told that my boob weighed about 1kg and they took out 100g (so far). You wouldn’t notice any difference with or without a bra on at the moment.
My scar runs from my cleavage to my nipple about 6cm but i can still wear a low cut top. My surgeon says it was like taking a segment out of a terrys chocolate orange. I would rather keep what i have then lob the lot off. I think it depends on whether or not you’re married, single or have a partner because I don’t know how i’d feel being single and having a mX. My second operation hurt but it just felt like a major paper cut for a few days.
Good luck with the choice.
If your tumour is ER+ and you are not expected to need chemo, then another option may be to try shrinking it with hormones.
I was told that my tumour was large compared to the size of my breast (only a lowly A cup), so my breast surgeon said that a WLE would have left only a half breast. So my options were either MX (+ LD recon) or chemo/hormones to shrink then WLE + rads.
I decided I wanted to try and avoid a large operation so tried to shrink it first. My onc said I did not need chemo, and as it was ER+ I took Femara and had Zoladex injections for 5 months. Although it did reduce my tumour, it did not do it veryt evenly, so I still needed the MX afterall.
I know how you feel trying to decide what is the best option. I do not regret trying to shrink it first, because if I had just gone straight ahead with the MX+recon, I would always have wondered if I could have kept my breast.
Do your research, get all the advice that you can before making your decision.
Julie