Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Need someone to talk to

Caramaya
Posted by

Hi everyone, this is my first time here.  I've been recently diagnosed and am due for a lumpectomy next Friday.  My surgeon didn't think there was any point checking the lymph nodes because he said I couldn't have chemo, so radiotherapy and hormone therapy are the planned treatment post operatively.  I insisted that I wanted to know if it had spread, and after some wrangling (which mostly consisted of him not wanting to be sued if I pegged it on the operating table) he agreed to check if the anaesthetist thought it was safe.

I saw the anaesthetist  during my pre op check (no thanks to the surgeon who hadn't requested it) who agreed it should be done.  So hopefully he will check them.

I have peripheral arterial disease (my aorta is blocked half way down, along with my iliac arteries) so I have to walk very slowly, and I have factor V Leiden so am prone to blood clots.  I'm also very overweight, mostly due to my lack of mobility.  My surgeon told me an oncologist would never give me chemo because it would kill me.

I know most surgeons are a different breed to the rest of us and can be pretty blunt, but frankly I'm terrified and don't want this man anywhere near me, let alone operating on me.  I'm trying to hold it together for my husband who's in a right two and eight, and my kids who are thankfully all adults, but I fear I'm going to have a complete meltdown by the time the surgery is done.

I don't know where to turn for help, even the nurse seemed to be backing off from me, so I don't feel she is approachable.

Sorry for the long post.

Londonmumof2
Posted by

Hi Caramaya, 

Is there any way that you could get a second opinion from another surgeon? I don't want to add to your stress, but it does sound like one of those cases where it might help. It's your body and your health after all. Are the any other breast cancer doctors you could ask to speak to (maybe through your Macmillan nurse if you have one) on a day your surgeon isn't around so that it's more diplomatic? Failing that you could ask a second opinion elsewhere. At my hospital there are several surgeons who meet as a team with the other staff involved in a patient's care, and they are usually quite happy to let you speak to someone else in the team when they aren't there. My surgeon works in 2 NHS hospitals which are the same trust as well as sometimes a private hospital (as most do).and my oncologist is also working at 2 hospitals.

It's routine to run a heart scan before chemo, and it does sound like you wouldn't cope with it. I'm guessing that he wants to minimise your time in surgery because of you health, but it's standard practice to check the nodes. Did they scan them? Usually if they are apparently clear (20% of those which look clear aren't) then they remove the sentinel nodes. If there are more involved or the nodes already are positive then they will do a clearance, My nodes looked clear but one wasn't so I'm now having that operation in a couple of weeks which will take another 2 1/2 hours approx.

I'm guessing it's an ER + cancer, but is it also HER+, and what size is it?

Everyone told me that the waiting for test results and treatment to start is the worst part, and it really is!

Margaret xxx

OneTooManyBiscuits
Posted by

Hi Caramaya,

There are at least a couple of tests I'm aware of that can be performed to see if the cancer is present in the lymph nodes - ultrasound and needle biopsy. I'm uncertain at what point in the tumour's growth they would be picked up by either test but it seems the biopsy would be relatively straightforward for indicating if the disease had spread to a lymph node(s) most local to the tumour.  So it might be worth asking if a lymph node needle biopsy is possible to see if there's any obvious spread?

That said, it may be they've already biopsied the tumor, found it's a grade 1 (slow growing, slow spreading) and therefore doesn't need chemotherapy? Without more information about the tumour's specifics it's purely guesswork on my part, I'm afraid. That, coupled with your existing medical conditions, makes it very difficult to advise what the best way forward would be. However, I imagine the type of surgery has been decided on balance with your medical conditions. After all, the longer the surgery, the greater the risk, no matter how slight that is and that, in turn, must be balanced against the type and size of tumour, where it's situated and so on. Similarly, the surgeon would have consulted with his colleagues as part of a multi-disciplinary team and won't be making these decisions in a vacuum.

Before you seek a second opinion, potentially delaying your treatment, it may be worth speaking to the consultant or the breast care nurse again (a different one, if the ones you've spoken to seem off) to establish exactly what grade the cancer is and the process and formula used to reach the treatment decision they have.

I think it's safe to say the treatment team will be acting in your best interests and the decision they've reached will be based on relatively rigorous scientific logic. Having a greater understanding of how and why they've reached the conclusions they have may help ease your mind somewhat.

I hope this helps in some small way.

Dom.

Rosieamber
Posted by

Hi have you phoned the Macmillan nurses they are very good and will listen and answer all your questions