Margin not clear - what should I do?

[Belinda]

Hi - can anyone offer some advice on this?

I had a modified radical mastectomy and axillary clearance on 10 Jan, which found invasive dutal tumour 4cm and another .7mm, 6 of 19 nodes involved, er-/p-, HER positive. Start chemo on 9 Feb.

My GP gave me a copy of my path report today, (I went looking for more info and investigation of my other breast), and it says that my (multifocal) cancer went within a naked-eye visible 5mm of the lateral margin, but focally (under the microscope) went to the actual margin. It says:
"clear of the deep margin by 15mm but focally involving the lateral soft tissue edge"

What should I do about this? My surgeon has kind of brushed the question of whether I had clear margins off by saying it doesn't apply the same way when the cancer is mutifocal.

I am seeing Mr Mr Surgeon tomorrow afternoon - would appreciate the thoughts of your wise heads on what I need to do to deal with this.

Kind regards to all - Belinda

[tousled1]

Belinda,

I'm not a doctor but if I was told I didn't have clear margins, especially with positive nodes, I would most definitely want additional surgery to get clear margins. You said you have an appointment today so I would ask if additional surgery was going to be done and, if not, why. Good luck to you and please keep us posted.

[rinaina]

Belinda, if you don't get clear answers and your surgeon/doctors brush you off, time for new doctors/surgeons You will never have confidence or peace of mind if you are not getting the answers you need to make an informed decision about your case. Good luck and I sure hope you have better luck getting to the bottom of your case this time around.

[Belinda]

Thanks rinaina and kate - it's 6.08 am here and I have been worrying about this all night. I think you are right - time for the tough conversation with the surgeon, and a second opinion. Does andyone know whether insisting on more surgery affect my outcomes if surgery is delayed? My mastectomy was on 10 Jan - even if he did it tomorrow (unlikely) it would probably be another month before I could start chemo.

Warmest regards to everyone. Thank you for this board - it is a wonderful to be in touch with such wonderful people.

B

[CLTann]

The standard thing to do is to redo the surgery until clear margin. Without clear margin, you KNOW that there are cancer cells at the edge of operated site and they most likely will cause further spread. Insist getting clean margin from the surgeon. Why did your GP get involved with the problem of operation?

[Belinda]

Hi everyone - thanks for all of your replies. I saw the surgeon today and interrogated him thoroughly on a number of fronts.

My surgeon has said that he actually "ran out" of breast tissue, and that he took all available tissue. He confirmed that there are probably some cancer cells remaining on the surface of my chest wall, but he expects that chemo (initially) and most particularly radiotherapy will deal with that. Not sure what to make of that. I am not sure that much can be done but hurry up chemo and radiation therapy. Any thoughts?

Also, this am I went for an extra mammogram and ultrasound on my RHS, and the mammogram was clear (no surprises there - even when it was 4cm my main tumour didn't show) but the ultrasound was inconclusive - extensive shadowing and in two 'sore' spots, a ridge of thicker tissue but apparently normal, and two normal-looking nodes, but no obvious evidence of lesions - didn't rule our cancer and recommended further imaging due to the "occult" nature of my LHS cancer.

So, under guidance of Mr Surgeon, we are doing another ultrasound and some needle biopsies tomorrow afternoon, at the clinic that first found my cancer, and I have been listed for a second mastectomy - this time we hope without axillary clearance - on Thursday, in case either we find cancer cells, or in case we all agree just to even me up and get rid of the risk. At this stage my hell-of-a-guy, my mum and my girlfriend all agree wit me that it should just go. And the surgeon seems to think its a sensible option, given the sneaky nature of my cancer and the inconclusive ultrasound. I would really hate to get through chemo only to find I had another sack of cancer tumours on the other side that had just gone to sleep until the storm had passed.

It will mean chemo is delayed and may not start for up to 8 weeks from my original surgery (it's only 3 effective tomorrow and I have healed well enough, no seromas or infection, and for a second and less radical mastectomy I would have up to 5 weeks to heal, all going well).

Thanks again for all of your suggestions and support. I am so grateful for this site and for all of your wisdom, especially when I know that each of you are on your own challenging journey.

Bx

[tousled1]

Belinda,

I'm so glad that you followed up with your doctors. It seems that they are being very thorough. Sorry to hear that you will require additional surgery, but in the long run it's the best course of treatment. HER2 breast cancer is very aggressive and so must be treated aggressively. You're in my prayers. Please keep us posted.

[Jean]

Dear Belinda,

Welcome to the very best group of wise and knowledge ladies and gentlemen.
I am sorry that you have been dx. with bc and I will keep you in my prayers
for a speedy recovery. Keep us posted on your progress.

Kind Regards,
Jean

[mts]

Belinda,


Any chance of getting a breast MRI ?? It would be more conclusive in diagnosing the occult tumors than a Ultra Sound. Although any scar tissue would mimic a tumor, a very experienced MRI doc could discern any tumor...

maria (MTS)

[Belinda]

Thanks Kate Jean and Maria -

I initially went along yesterday to the surgeon, having read that MRI's are routine in the US, insisting on one.

Mr Surgeon's response is that in Adelaide (the Capital of my State South Australia) there is only one MRI machine with a breast cone, and only a couple of operators that can use it. He says they reserve if for genetically positive women, and to get into that group I would need to be genetically tested.

Alternately, I could travel to another State, at some expense (Australia is a big country with big spaces between Capital Cities), to get it MRI'd.

He then explained that while the MRI is detailed, it has other difficulties in that it shows up a lot more detail, and to really know whether what it shows up cancer or other things, in the end needs a needle biopsy, which can't be done in the magnetic field of an MRI, and would still need another U/S to do.

So, we would go through genetic testing (which is a lengthy process here and requires referrals and genetic counselling etc - ie takes some time) to get an MRI here IF I am a gene carrier, OR travel interstate for MRI....more time. Then if it came off anyway, after scheduling surgery and waiting for recovey, I could be well outside the 8 week 'safe' period for chemo to start. So it seemed then like the logical thing to avoid all the hassles, do a second U/S and needle biopsy, and consider just having the thing off anyway.

And I am not sure I want to know the outcome of genetic testing, at least not until my 5yo daughter is much older, has started to establish her early adult life and has all her insurances in place.

So...it's off to see the sonographer and surgeon today at 2.15. I love those needle biopsies!!!!!

Warmest regards to everyone. Bx

[merryg]

After a mastectomy 1/06 with wide clear margins (ER/PR-, Her2+++, no positive nodes), had a recurrence and re-excision 9/06. Path report revealed margins were NOT clear at re-excision, and there were multiple areas of microscopic involvement of chest muscle and one edge of dermis. Surgeon said she got all the breast tissue she could take (and a thin layer of muscle), and radiation/systemic would address the rest. I had/have similar questions about "dirty" margin. Radiologist said when they expect clear margins and treat accordingly, but margins are not clear, that's not good. But when they know the extent of chest wall involvement and target radiotherapy for that, it can/should be successful. What is experience out there with dirty margins and radiation success/failure? I am not taking chemo or Herceptin d/t other conditions.
merryg