Why does mastectomy come before finding out if the cancer has spread?

Clearly you should take some time to think about how much you value a breast against how much you want to live. I am not saying this in a harsh or judgemental way because we all have to navigate our own path through cancer. I have recently had to make the decision in a very short space of time and decided on mastectomy, not an easy choice and not without complications. But we have to be aware that cancer holds no bounds, so limiting its spread has to be a wise choice. My scar is not bad, in fact I feel relieved. Life is out there to live, embrace it

This hasn't been my experience, I was diagnosed, they knew right away that it had spread to my lymph node so I was sent for a CT scan before a treatment plan was decided to check if it has spread anywhere else first.

I think it’s a good question. I was have just had a lumpectomy and lymph nodes removal. (WLE and ANC)

My consultant told me that the purpose of surgery was to stop the spread of cancer. If it’s already spread, there is no point in the surgery.

I asked about a scan and she said they often showed up suspicious things that needed to be investigated and then turned out to be benign. Her view was that they often just delayed surgery, which was more likely to be beneficial.

i get that this approach will work for most people, but personally I would’ve preferred to have the reassurance of a ct scan, like but possibly it’s not good value for money (yuk!) 

i think for you MoominAncestor, it’s more to have the facts to decide a treatment choice. Are there other tests they can do to judge the likelihood of spread? Hugs and courage for you to ask these questions and get the answers you need xx

Thanks for your reply, @SarahsFlowers I've not been offered anything else at all, not even other tests or options or things to think about. The consultant told me I "need" a mastectomy and radiation and ten years of hormone tablets, after surgery he'll decide maybe chemo or more. They'll look at the sentinel lymph nodes while performing the mastectomy because on the ultrasound the lymph nodes look inflamed but not obviously cancerous. He said normally there's a 15% chance of spread but in my case it's 30%.

I can't stop thinking about if it has spread, (and I don't know whether I would want chemo if it has), in which case would I really want to spend the last months or years of my life suffering worse impairments than I already endure through the chronic illnesses I live with?. But it seems I've been put on the conveyor belt for surgery first, ask questions later.

It's a particularly big deal because there isn't enough skin to easily cover the mastectomy wound. All the breast skin has to go and its a very large area. It'll involve more complex procedures than a standard mastectomy to try and patch the gap, and the surgeon is still concerned that the wound will be too tight. It's potentially a lot for me to go through in terms of likely increased disability due to lower chance of successful surgical outcome, than there is with more typical mastectomies - especially if the cancer is going to kill me anyway. But nobody knows that yet because there haven't been any tests or scans for spread.  Quality of life is more important to me than quantity. A lesson learned from long term disability. Both quality and quantity obviously would be ideal. But being given an informed choice is important too. 

I feel conflicted. My pre-op is on Tuesday. 

Hi Very good luck with your operation tomorrow, For me it will be two weeks tomorrow since I had my Mastectomy. I did wonder why they don't do CT scans before the operation to see when and if the cancer has spread. When I get my follow up appt with the consultant I will ask him. There is such a lot to think about (and worry about.) I just think that an initial CT scan would set our minds at rest, or at least let us know what we are dealing with. I expect it may have to do with expense of treatment, I will be thinking of you tomorrow. Good Luck. xx

Hi MoominAncestor, sorry for late reply, just getting hang of forum stuff!

It does sound like you need more information..sorry that’s a bit obvious! Do you have a breast care nurse assigned to you? I wasn’t clear about why I was having all my lymph nodes taken out. But the breast nurse explained it was because cancer had been found in one of the lymph nodes in the biopsy they did at the same time as the scan. As soon as cancer is found in any underarm lymph nodes, they whip them all out as standard practice. (I think it’s standard everywhere, including in USA.)

One thing that is a bit confusing is that my Consultant talked about the cancer spreading to my lymph nodes. I heard the word ‘spread’ and panicked. But she did explain that cancer spreading to the lymph nodes is not the same as cancer metastising, ie going to other places like liver, bones, brain, etc. It’s not great that it goes to the lymph nodes but then it is their job to stop the spread of any disease, including cancer. It has been found in my lymph nodes, so they have whipped them all out and will be looking at them under microscope to see which other ones if any have cancer. The fewer cancerous ones that they find, the more likely that the cancer hasn’t got beyond the lymph nodes. This was my understanding anyway. But hopefully you can get a medically qualified explanation from your breast care nurse or one of the Macmillan helpline nurses. 

It sounds like you have a pretty good idea of what your breast surgery will involve. But there still seems like some uncertainty with your consultant saying it might be too tight?

Hope you get some more information soon. Hugs and best wishes for your continued fortitude xx

Thanks Mal70. Its just my pre-op tomorrow to ease me into the stress of surgery the following Tuesday. ;) Thanks for the kind wishes 

Sorry about your lymph nodes, SarahsFlowers. I hope you're mending well from that surgery. In answer to your question,  I don't have a Breast Care Nurse. The nurse who saw me after the Consultant gave me my diagnosis had been brought back from retirement just for the one day. She was very nice but kind of "phoned it in" as she started explaining what was in the pink folder but then she decided I could just read it for myself in my own time. She told me I would be unlikely to see her again because she wasnt supposed to be there.  I suppose they're understaffed.

They did 3 biopsies on the day of the ultrasound but didn't mention if any were from the nodes. The radiographer did mention them being from the tumours, though.  I suspect they didn't biopsy any nodes because at the diagnosis appointment three or four weeks later,  the Consultant said the nodes look inflamed but that it's hard to tell on an ultrasound image. That implies they don't have biopsy material from them to assess. 

I've written down a few questions to ask at my pre-op tomorrow, so hopefully I'll come away with a clearer idea of what to expect next week. 

I am mending well, thank you. Just waiting for results but at least I know where I am and no major surgery has ever been needed yet and stat

It’s rubbish you don’t have a BCN. Have you tried the cancer information nurses?

https://www.macmillan.org.uk/cancer-information-and-support/get-help/physical-help/cancer-information-nurse-specialist

You sound like you’ve worked out as much as you can. 

There is also the NHS PREFICT tool.. but you may not want to go there or have enough information.

https://breast.predict.nhs.uk/about/overview/whoisitfor

Scroll down to use the tool and there’s also a link for support and information.

Hugs and good luck and best wishes xx

Thanks for those links SarahsFlowers. I'll take a look. 

I've just got back from my pre-op - they weren't fibbing when they said it'll take all morning. I'm pooped! And now they've said I've got to go back again on Thursday for one with the anaesthetist too. But that's alright. Belt and braces stuff.

But what was good was finding out a bit more about what's going to be happening to me next week. The consultant confirmed they did do a node biopsy when they biopsied the two main tumours (I've not got anything in writing about the results, only the type of cancer), and the node result was benign. So that's good. They'll  be doing the sentinel node biopsy too when I'm having the mastectomy, because of the inflammation apparent in the nodes in the ultrasound. But at least those initial findings were hopeful. 

The Consultant also confirmed that it will be a particularly large area of tissue and skin being removed (big booby, multiple tumours), so they're kinda going to fillet my upper tummy on one side down about 10cm and pull the skin upwards, a bit like when you were a kid and pulled your pyjama troos up to your armpits for a laugh (my words not his) - to surgically create some skin laxity to fill in the gap left by my departing  booby.

And despite the Consultant saying it'll just be a day surgery, the nurse in charge of the pre-op (she was amazing today, so attentive) said I'll definitely be kept in overnight. But at least I know that now and can plan for it. 

It makes such a difference knowing what's coming! I feel weirdly relieved.

I didn't get to ask specifically about why mastectomy before checking for cancer spread, I am still curious about that generally. Knowing the initial findings of the nodes were benign makes it less important to find out - but I am still intrigued.  They were so busy today (9 or 10 cases like me in the breast clinic,  instead of the usual 2-3 apparently) So it was a mad dosey-doe of in one room, out another. 

I still don't have a cancer nurse. Hopefully I'll be alotted someone after surgery. 

Good luck with your results.