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Triple Negative Breast Cancer - Lumpectomy or Mastectomy?

(24 Posts)
Tiny100 Sun 23-Mar-14 18:25:06

After weeks of waiting, I have finally got my BRCA results back. Great news, I am negative for the BRCA1 and BRCA2 gene. I now have to make the decision of which surgery to have once my chemotherapy treatment comes to an end. I seem to have three choices:

1. Lumpectomy (Surgeon corrects me and calls it a Wide Local Excision, but I think it is basically the same.)
2. Single Mastectomy
3. Bi-lateral Mastectomy

The Breast Cancer that I have is Invasive Ductal, which is Triple Negative, (it doesn't have receptors for oestrogen, progesterone or HER2), and it is in my lymph nodes. I am 37 years old, fit and healthy, (apart from the BC), with no family history of cancer, breast or otherwise.

My Surgeon is encouraging me to go for a lumpectomy, saying that it is just as effective as having a mastectomy. I know that regardless of what surgery I choose, I will also be having radiotherapy, so this isn't about having radiotherapy or not.

I just don't know where to begin in making this decision and it doesn't help when your head is foggy from the chemo. Ultimately I just want to give myself the best possible chance of survival. Just wondering about the choices others have made, or been encouraged to make.

malteserzz Sun 23-Mar-14 21:38:36

I had a lumpectomy but mine wasn't triple negative. I'm really bumping for you and I hope someone more knowledgable will answer

smee Mon 24-Mar-14 10:12:12

Tiny, great news on the BRCA gene. smile I think you should ask your team simple stats, so chances of recurrence if you have mastectomy, then chances with lumpectomy. Am guessing they'll do nodal clearance as it's already been found in your nodes? Also guessing as you're young to have it it's aggressive.

I have no idea on triple negative as mine was ER/PR +ve, but grade 3 and also in nodes. I had mastectomy (2010), then a year later went for elective mastectomy for the other breast. I researched and found it gave me better odds against recurrence. My surgeon started off saying it wasn't necessary, but did admit it improved my odds so it made sense to me. Having said that I know lots of women who had just a lumpectomy and have had no further problems and I often wonder if I went in with a sledgehammer to crack a nut. Only thing I do know is that I've done absolutely all I can to prevent soddin' cancer returning. Such a tough decision though and impossible to know what's best without a crystal ball. fwiw though, I think all you can do is be forensic on finding out as much as you can, then take a view. Ask anything you want if it helps.

Tiny100 Tue 25-Mar-14 20:49:05

Malt - Thanks for the bump!

Smee - Good to hear from you, I hope you are doing well? Yes, I have been told that it is aggressive and that I will be having a full node clearance, hopefully at the same time as the breast surgery, although this might be naïve on my part. Thanks for your suggestion about simple stats off of the Consultant, great advice. Could I ask, was there a particular website that you found useful when you researched into this? Damn, if only we could all have a crystal ball, would be so much easier!

BetsyBoop Tue 25-Mar-14 22:41:15

tiny I did quite a lot of research on this (but different scenario to you as mine is strong ER+ lobular) as my risk of contralateral disease was increased. I ended up opting for a bmx, which my surgeon fully supported once he knew I'd looked at the evidence and all the pros and cons. For me it was peace of mind that I'd done all I could, like smee (who helped me greatly sharing her experience of bmx when I was at the thinking about it stage smile )

I've had a quick look for research for your circumstances and came across this study and this one which suggests that triple negative (well the hormone negative bit of it) is also at higher risk of contralateral disease.

As well as what smee said, I would think about drawing up a pros and cons list for each option, as that really helped me be sure of my decision.

If there are any specific qus you have just shout up smile

harrietv Wed 26-Mar-14 16:21:59

Hi Tiny, as you know I've just made the decision for BMX. I had DCIS in right boob, and an aunt who had ovarian cancer young. Still awaiting BRCA testing.

My decision was partly gut instinct based on the lack of importance in terms of self image and esteem, that I attach to my breasts. This is obviously hugely personal. My nurse said a lot of ladies she treats would do anything to keep their breasts. I'm on completely the other side. Mine were small and insignificant to me, and DH was supportive of this.

Once that's out of the way the following pieces of info were important to me:

Uncalculable increased risk of further BC due to aunt's early ovarian.

Contralateral breast had incremental yearly 1% increase risk of BC in the future. I'm also young at 38 which means by the time I'm 68 which I'd love to be, my risk of cancer in that breast is 30% higher than normal.

Mine was DCIS but there was a study comparing outcomes of lump&rads vs mast alone, which proved no difference on eventual longevity BUT lump&rads had an increased risk of recurrence. At the end of the day those who had a recurrence were not statistically more likely to die any younger, but their lives and their children's lives would have been altered by having to fight BC again. The Drs were saying it was fine, if it comes back, we treat it. But this stuff takes it's toll, on you and your DCs. I was happy to lose my breasts to make it less likely we have to go through this or worse in the future.

Like BetsyBoop Idef suggest you get all the figures you can. I'm an information hound (a journalist by trade so researching is my bag) and I found it helpful to go armed with my own figures, I would have happily be corrected by consultant if they were old/wrong etc but I find it hard in the heat of the moment to make a calculated decision when talking to an expert which goes against his advice, unless I have firm info to hold up. With that info my BS also said my decision was valid.

Am 38 and otherwise fit and well and have to say it's not been nearly as bad as I thought. Haven't had node clearance though.

I found this forum useful http://community.breastcancer.org/forum/72 (that's the TN part) as many of these women have done the research for you and link into relevant studies.

Wren48 Wed 26-Mar-14 17:23:05

H Tiny, I won't be able to add much but, for what it's worth, I had a lumpectomy followed by single mastectomy. Both of these were on the surgeon's advice. I couldn't get any decent advice from my surgeon on single vs bilateral mx, but one of the plastics team I spoke to simply said that the bilateral op is much bigger, so he said only go for it if certain.

However, I have a number of friends who have never regretted the bilateral mx option. I think there's a simplicity about that decision. I think harriet nails it when she talks about the impact of further treatment on self and family.

smee Wed 26-Mar-14 18:27:30

Hi Tiny, I'm not sure my research is relevant to you simply because the thing that mostly swung it for me was I'm on Tamoxifen and I found some studies saying that increased chances of new v.aggressive tumour in remaining cancer free breast. I'm not even sure if that's still current as it was 4 years ago, but you won't be on Tamoxifen anyway if you're triple -ve. Betsy's links are good and what Harriet says too. Have you got a good Breast Care Nurse. I always found mine good for talking through options. Ask anything you want though. will try and help if I can.

Harriet, do you know when you're op is? Hope soon now you've made the decision. The waiting's horrid, but I honestly found the actual op nowhere near as bad as I was expecting.

Waving to Betsy. smile

harrietv Wed 26-Mar-14 18:40:23

Hi Smee - i actually just had it. am 11 days out and I also found the actual op nowhere near as bad as I feared. Haven't been on any pain meds for 2 days

ConsiderablyBiggerBuns Wed 26-Mar-14 18:51:06

Hello tiny I have lobular invasive tumours in my left breast. I have elected for a BMX which is scheduled for 8th April. The decision was quite easy for me with similar feelings to harriet about my breasts being both small and in my view not that important, I do know that not everyone feels like this. My consultant was not very helpful in this decision, I only had a matter of minutes to make up my mind and he did not want to discuss the chances of reoccurrence was just fixated on the fact that the elective mx would not aid my chance of survival from the current threat. My decision was based on the fact that my cancer was caused by radiotherapy treatment I had for Hodgkin's disease almost 30 years ago. The treatment was given right across my chest, do what is there to suggest that a tumour isn't quietly simmering away ready to make an appearance on the other side. I didn't want to be sat in the same chair in 5 or 10 years time when a marginally longer piece of surgery could have fixed it. From an aesthetic point of view, reconstruction is easier on a BMX, but to be honest this was not a major factor for me.
Good lunch, whatever you decide.

ConsiderablyBiggerBuns Wed 26-Mar-14 18:52:35

Good luck, obviously. Although happy to wish you a good lunch as well!

foofooyeah Wed 26-Mar-14 19:05:06

Hi, different type of breast cancer to you.

I had no choice as had to have mx, but decided on bilateral for 2 reasons.
1. Although chances of greeting in other breast were incredibly slight it ruled it out.
2. I had very large droopy breasts and matching up one would gave been impossible and I didn't want lopsided

Have not regrettied it at all, have implant recon done at same time although currently only slightly filled due to ther surgery (ANC) being required. Don't miss my old boobs one little bit.

weebarra Wed 26-Mar-14 19:47:40

Hi Tiny, as it turned out, I didn't have a choice as I turned out to be brca2 positive but when I first found out I had cancer in both breasts and because of positioning it looked like mx in one and lumpectomy in the other. A colleague who had a single mx regrets it, mainly for aesthetic reasons- she didn't hae recon and feels as though her prosthesis and boob just don't go.

smee Wed 26-Mar-14 21:13:24

Yay for you, Harriet. Glad you're not too sore. Are you drain free? I always hate those pesky things.

NoMoreMuddyTrousers Thu 27-Mar-14 20:25:47

I'm another DCIS, very similar to Harriet actually. I'm 35. I had no option but mx for the right boob, but I have asked and asked and asked for the left boob to be done too. Bit disappointed that they couldn't or wouldn't just do a bmx, and that I have to have two separate procedures.

I opted for reconstruction using implant, and had this done at the same time as the mx procedure. I didn't want to do the back flap thing, because i didn't want another wound on my back or to risk any impact on my shoulder strength (enjoy surfing !). Plus my boobs are tiny, so a small implant just seemed easier.

But I was lucky because I didn't need radiotherapy, which obviously affects whether you can do an immediate reconstruction (I think). If you go for mx, do you think you will then want a reconstruction later down the line? Could you do this? Maybe consultant is trying to save you from that additional procedure by advocating lumpectomy?

Sometimes they do seem to have their own agenda. Mine was really keen for me to have a back flap, and I got the impression that he loved doing that operation. I had to be really clear in the end that it was just not for me.

FrancesNiadova Fri 28-Mar-14 21:46:23

I had a mastectomy because it was everywhere. But, on breastcancercare.co.uk there is a helpline number where you can speak to a qualified breast nurse who has experience of your type of cancer. I found their help invaluable when making my decision to have a mastectomy with immediate reconstruction.
Whatever you decide, sending many hugs & best wishes. thanks thanks

girliefriend Fri 28-Mar-14 21:50:04

I have seen too many woman die after having lumpectomy sad I would advice any woman with breast cancer to have a bilateral mastectomy.

malteserzz Fri 28-Mar-14 22:05:37

Thanks for that girlie friend sad

girliefriend Fri 28-Mar-14 22:10:32

I am so sorry, it's an awful, awful disease. I know my view is probably skewed as I only see the cases where treatment hasn't worked however all the woman I have cared for who have died of breast cancer had lumpectomies. sad

malteserzz Fri 28-Mar-14 22:22:12

Well I had one last year on my surgeons advice as have many others on here

BetsyBoop Sat 29-Mar-14 06:58:36

malt promise me you are ignoring the unhelpful comments here and remembering what both amber and I said on the other thread about what actual research by real doctors has shown for people in your situation. smile

BetsyBoop Sat 29-Mar-14 07:12:10

one of the research studies -this one involved 112K+ women.

malteserzz Sat 29-Mar-14 08:00:12

I'm ok thanks Betsy but if I or anyone else had come across that comment whilst feeling depressed it could easily have tipped them over the edge.

smee Sat 29-Mar-14 11:42:46

Betsy's right Malt, that's so unhelpful and v.far from scientific - the stats are v.much on your side!

I'd bet Pigeons wouldn't mind me quoting her, but we often say we're cancer twins as we had similar starting points. She hasn't had bi-lateral as was told it wasn't necessary (as was I), 12 years on and she's still clear. If I get to that heady milestone I'll never know if it my second mastectomy was necessary or not, but odds say it probably wasn't. I honestly know so many people who've had lumpectomies who are living life to the full with no sign of recurrence. I only went for it due to my own circumstances, mixed in with needing another op on the remaining breast anyway. We're all so different. Trust your team, ask all the questions you need and want to and then live! smile

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