Marguerite
Active Member
We just got back from seeing the surgeon for follow-up. She also removed the dressings. She wasn't happy that my boob is currently the colour of an aubergine, although when she told me what she had done, I'm not surprised.
Results - the sentinel nodes were negative on frozen section (which we knew as soon as I came out of surgery, because they only took the two and not the lot). But the more detailed careful sectioning over the last few days also showed no cancer in the nodes.
Tumour - it turns out to be slightly bigger than we thought, because it wasn't round, it sounds to me like it was more the shape of an olive only a bit more irregular. The doctor took the tumour (the hook wire was right in the centre, except there was a bit of tumour creeping across more to one side, she discovered) and when she examined it after she got it out, she felt the margin was too close on one side, so she went back in and took out another chunk of tissue.
So, results - nodes, OK.
Chunk 1 (main tumour) - as suspected, invasive ductal carcinoma. But a Type 1, meaning slow-growing and not aggressive. The margin on one side was considered to be incompletely excised, margin less than 2 mm. Good margin elsewhere.
Chunk 2 (extra bit to account for poor margin) - on wide sectioning, it seems OK. No trace of cancer found in it. But they're going to re-section it (cutting much thinner) and have a more detailed look.
basically, they cut the lumps as carpetbag steak and looked at the cut surfaces under microscope. Now they're taking the carpetbag steaks and cutting them to sashimi and going to have a more leisurely look.
Other information gleaned - the tumour is receptive to both estrogen and progesterone. It's also HER-2 negative.
Hormone positive - good news. It means I take pills to shut off the hormones to the tumour, so any cancer cells that may have been left behind (and it doesn't look like there were any, this is just to make sure) will get starved while I take the pills. The one most likely in my case is the newer one after Tamoxifen. Did you know that Tamoxifen is now considered old-fashioned?
HER-2 negative - that is also good news. The nastier, more likely to recur tumours are the HER-2 positive ones. Mine is negative. Great!
So my next thing to do - I have to call the radiotherapy mob and arrange an appointment. That isn't likely to happen for a few weeks, after which the pathology results in detail will be in, the doctors will have had the multidisciplinary team meeting (the big Think Tank where they talk all about ME - and then any other patients whose results have come in during the previous two weeks) and that team will decide what has to be done from here. Radiotherapy certainly, then the medication to block hormone receptors.
The medication has side effects - arthralgias, osteoporosis, 1 in 1000 get DVT and other clots. Because I already get a lot of pain she said I probably won't notice the arthralgias (they have found that osetoarthritis patients tend to not notice either).
I've sailed through the recovery from surgery (in terms of pain levels) perhaps because I already have pain so what's the problem with a little more? However, I did find I was feeling weaker, fuzzier and flu-ey increasingly, plus my boob was two cup sizes bigger, so on advice I began antibiotics. I have two antibiotics left, we've been trying to not over-use them. Besides, only one was likely to work and it costs $70 for a course of five pills. Ouch!
I'm feeling far less flu-ey today, boob is less swollen and not feeling warmer than the other side any more. I can finally see the scars and they are going to not be an issue. The boob scar is a fine line following the line of the areola, about an inch above it. I only have one top where there's any chance of the scar being visible.
The armpit scar is smaller and will be even less visible. I still have gum from various dressings, so I'm about to gently wipe it all down with ti-tree oil to remove the gum. I can now shower, go to the beach etc, just keep scars out of the sun (because they can darken in the sun) and treat them gently for a while longer.
No ban on underwires - in fact, because the incision is on the upper surface of the boob, the doctor said underwires will give me the best support and right now, I need support for the sake of comfort.
So I'm back to wearing my underwired nightdress at bed-time (very sexy! Come on in, Nosferatu) and both sides now look more even, with the swelling down. It's just that the purple boob clashes a bit with the red satin and black chiffon...
I've also been having problems with Benign Positional Nystagmus (dizzy spells when I turn my head) which I had for about two weeks before the surgery. I'm seeing the neurologist about it tomorrow, I'm hoping he can fix it fast for me. I last had it this badly, before we went to New Zealand (less than three years ago) and he fixed it fast for me, so we could go away and not worry too much about me crashing into walls etc. It's been so bad that with the post-op feeling bleah, I didn't feel safe to drive the car. I'm over the worst of the bleah now, just the vertigo. And if I don't move my head too much, I shouldn't have the really bad problems while driving.
It'll be a surprise for the neurologist - I saw him last only a month ago, and there was no hint of any of this. We've had a busy time of things in the last few weeks.
It's amazing how fast we got things done. I know our Aussie health care system is getting criticised here, but frankly, I have been very glad of it.
I'll let you know when I find out how long before I start the radiotherapy. By then I'll have the Team results and their recommendation of what drug to take, the prescription will be waiting there for me, the surgeon said.
Bounce back time!
Marg
Results - the sentinel nodes were negative on frozen section (which we knew as soon as I came out of surgery, because they only took the two and not the lot). But the more detailed careful sectioning over the last few days also showed no cancer in the nodes.
Tumour - it turns out to be slightly bigger than we thought, because it wasn't round, it sounds to me like it was more the shape of an olive only a bit more irregular. The doctor took the tumour (the hook wire was right in the centre, except there was a bit of tumour creeping across more to one side, she discovered) and when she examined it after she got it out, she felt the margin was too close on one side, so she went back in and took out another chunk of tissue.
So, results - nodes, OK.
Chunk 1 (main tumour) - as suspected, invasive ductal carcinoma. But a Type 1, meaning slow-growing and not aggressive. The margin on one side was considered to be incompletely excised, margin less than 2 mm. Good margin elsewhere.
Chunk 2 (extra bit to account for poor margin) - on wide sectioning, it seems OK. No trace of cancer found in it. But they're going to re-section it (cutting much thinner) and have a more detailed look.
basically, they cut the lumps as carpetbag steak and looked at the cut surfaces under microscope. Now they're taking the carpetbag steaks and cutting them to sashimi and going to have a more leisurely look.
Other information gleaned - the tumour is receptive to both estrogen and progesterone. It's also HER-2 negative.
Hormone positive - good news. It means I take pills to shut off the hormones to the tumour, so any cancer cells that may have been left behind (and it doesn't look like there were any, this is just to make sure) will get starved while I take the pills. The one most likely in my case is the newer one after Tamoxifen. Did you know that Tamoxifen is now considered old-fashioned?
HER-2 negative - that is also good news. The nastier, more likely to recur tumours are the HER-2 positive ones. Mine is negative. Great!
So my next thing to do - I have to call the radiotherapy mob and arrange an appointment. That isn't likely to happen for a few weeks, after which the pathology results in detail will be in, the doctors will have had the multidisciplinary team meeting (the big Think Tank where they talk all about ME - and then any other patients whose results have come in during the previous two weeks) and that team will decide what has to be done from here. Radiotherapy certainly, then the medication to block hormone receptors.
The medication has side effects - arthralgias, osteoporosis, 1 in 1000 get DVT and other clots. Because I already get a lot of pain she said I probably won't notice the arthralgias (they have found that osetoarthritis patients tend to not notice either).
I've sailed through the recovery from surgery (in terms of pain levels) perhaps because I already have pain so what's the problem with a little more? However, I did find I was feeling weaker, fuzzier and flu-ey increasingly, plus my boob was two cup sizes bigger, so on advice I began antibiotics. I have two antibiotics left, we've been trying to not over-use them. Besides, only one was likely to work and it costs $70 for a course of five pills. Ouch!
I'm feeling far less flu-ey today, boob is less swollen and not feeling warmer than the other side any more. I can finally see the scars and they are going to not be an issue. The boob scar is a fine line following the line of the areola, about an inch above it. I only have one top where there's any chance of the scar being visible.
The armpit scar is smaller and will be even less visible. I still have gum from various dressings, so I'm about to gently wipe it all down with ti-tree oil to remove the gum. I can now shower, go to the beach etc, just keep scars out of the sun (because they can darken in the sun) and treat them gently for a while longer.
No ban on underwires - in fact, because the incision is on the upper surface of the boob, the doctor said underwires will give me the best support and right now, I need support for the sake of comfort.
So I'm back to wearing my underwired nightdress at bed-time (very sexy! Come on in, Nosferatu) and both sides now look more even, with the swelling down. It's just that the purple boob clashes a bit with the red satin and black chiffon...
I've also been having problems with Benign Positional Nystagmus (dizzy spells when I turn my head) which I had for about two weeks before the surgery. I'm seeing the neurologist about it tomorrow, I'm hoping he can fix it fast for me. I last had it this badly, before we went to New Zealand (less than three years ago) and he fixed it fast for me, so we could go away and not worry too much about me crashing into walls etc. It's been so bad that with the post-op feeling bleah, I didn't feel safe to drive the car. I'm over the worst of the bleah now, just the vertigo. And if I don't move my head too much, I shouldn't have the really bad problems while driving.
It'll be a surprise for the neurologist - I saw him last only a month ago, and there was no hint of any of this. We've had a busy time of things in the last few weeks.
It's amazing how fast we got things done. I know our Aussie health care system is getting criticised here, but frankly, I have been very glad of it.
I'll let you know when I find out how long before I start the radiotherapy. By then I'll have the Team results and their recommendation of what drug to take, the prescription will be waiting there for me, the surgeon said.
Bounce back time!
Marg