How do I decide?

I was diagnosed with a tumour in my left breast in April. Initially I was told I would be having a lumpectomy but an MRI showed the tumour was bigger than they’d measured on the US and because my breast is small I was now borderline between a lumpectomy and mastectomy.

My surgeon suggested I be put on 6 months endocrine therapy of daily Tamoxifen tablets and monthly Zoladex injections to shrink the tumour by 1cm with a view to continuing with the lumpectomy.

After just over 2 months the tumour had shrunk by 3mm. At that point my consultant had gone on extended leave and I saw the Senior Breast Care Nurse who said that was a good response.

Three weeks ago I had an appointment with another consultant surgeon (mine is still missing with no explanation). In the meantime I’d had an MRI which confirmed the ultrasound but didn’t seem to show any more shrinkage. 

The consultant surgeon kept asking me what I wanted to do. She mentioned that because of the size of my breast, even with a lumpectomy the resultant appearance would be sub-optimal. I think whilst she seemed happy the tumour was shrinking I got the impression it was not shrinking at the rate they had expected, but no one seems to be saying that. Or maybe I am being unreasonable in expecting, almost 5 months in for it to have shrunk more?

I feel like the goal posts move every time I go back for an appointment. Part of me wishes I’d just asked for a mastectomy straightaway but now I have to decide and I simply don’t know what to do. 

Does anyone have any words of wisdom? 

What type of cancer do you have and what are the levels of hormone? That will help determine whether endocrine therapy has a good shot at being helpful. I will say either way though that if you haven’t had a ton of shrinkage in five months, one more month probably isn’t going to be the game changer there. So the advice would be to consider what you want carefully in the next 15 years. Are you still going to be care about how your breast looks? If so, then you might want to just do a mastectomy and start over again with a DIEP reconstruction. They can do wonders there. Even an implant might be possible for a close match. Or if you don’t mind small breasts you can always see if they can make the cancerous breast at least look halfway decent with a lumpectomy and then do a breast reduction on the other one to match. If you don’t think you’ll care in the next 15 years what your breasts are going to look like then just do the simplest surgery possible to get rid of the cancer and move on because everything else takes quite a bit of recovery time. There’s no wrong answer. It’s what you can live with most comfortably in the future.

Only you can make the decision ,everyone is different . Personally I just wanted the tumour gone as soon as possible when diagnosed ,but I have a friend in the same position as you and she has been comfortable to take hormone therapy and wait for the tumour to shrink . It’s true that even with large boobs ( like mine ) you are often left with a big dent where the tumour has been removed . You can have further surgery to help with this however if you want to .
Do you have a breast care nurse? If so could you ask her directly about the amount of shrinkage etc ? You have a right to feel comfortable with the decisions you make and have the information to make them.x

Hi WM

Having played ostrich all the way through my primary bc and all the adjuvant treatments, I have a slightly different perspective gained with hindsight and experience. The key thing is what kind of breast cancer is it? Presumably it’s hormone receptive as you’re on endocrine therapy - but is it ductal or lobular? Where is the location in terms of your lymph nodes under your arm and are they cancer-free? Also, what Stage is your breast cancer? If the tumour is no longer responding, is there an alternative therapy you can have?

Like Jill, I just wanted my breast gone. I knew even with a reconstruction, I’d still worry about a recurrence. My only regret is that I didn’t request a double mastectomy as, following treatment, I grew a real womanly boob. Great, but one on its own is problematic and my wardrobe would be much more flattering if I were just flat! I don’t get on with my prosthesis and fortress bras!

What kind of surgery you opt for is a very personal decision. It was easier for me as I’d always been small-breasted and I was getting on a bit. What’s a boob compared to peace of mind? But that’s just me. My advice would be to get the facts (they may be in your copies of correspondence to your GP) and then ask your oncologist to explain what the implications of each are. Just don’t ask for a prognosis - it takes you into territory you might never need to think about so, in my opinion, it’s not worth the anxiety it may cause if it’s not brilliant.

If you can’t go with a gut feeling like I did, you can’t afford to play ostrich. You need to understand your breast cancer and what it might mean for you in the longer term. Then you weigh up risk against preference and live with your choice. Life in Cancerworld is not always simple!

Wishing you all the best

Jan xx

Hi Wimbledon mummy… sorry you’re having a hard time just now… I guess you need to think about what you can and can’t live with…for me I just needed to know the cancer was gone as quickly as I could ( i had mastectomy 9 days after biopsy results for 34mm dcis) …however I went on to have another cancer in opposite breast… grade 2 12mm …told no chemo needed, mammogram,  ultrasound and MRI showed no sign in nodes …however after surgery 1 node came back positive… so you never really know whats going on until after surgery no matter what the biopsy results show…for this reason I would always have surgery as soon as possible whether it be WLE or mastectomy… I need to know I’ve done whatever I can, as fast as I can to reduce the risk of secondary cancer… but thats me…and I get other people are not me…but I would say speak to your consultant … weigh up your risks …and rember that statistics are only numbers…they are not you…so your personal  risks may be higher or lower…decide what risk you can live with ( this is different for everyone… I’ve had primary BC 3 times …the first time I had a WLE then 6 years later had a recurrence in exactly same spot…ended up having a mastectomy as widespread and only 34 AA bra size … with hindsight I wish i’ d had a mastectomy from the beginning… I’m not saying any of this will happen to you…but always best to weigh up every small eventuality before making a decision…I wish you well