Forum Discussion
Mixed Feelings from Surgeon Review
I had an appointment with my surgeon yesterday - the first since finishing active treatment. I went in knowing it was just a review and I had my usual list of questions with me. I'm not really sure how I feel, now.
Earlier in the year, he didn't really want to discuss too much with me about reconstruction and he seemed to be dismissive (the word sounds too harsh so probably isn't the right one) of the possible need to consider taking the other breast. My concern, as I talked to him yesterday, is that it was almost impossible to see on the mammogram and on the CT Scan, and it was much bigger than had been thought and had spread to the nodes when it didn't appear to have from the scans. He told me that that type of mammogram I will be having (in November) is much more powerful than what I had at Breastscreen. But he also said that he could understand my anxiety and that he would be happy to take the other if it got too much for me (he actually said something along the lines of knowing that stats are just stats in the end and if he was in my place, how hard it would be). He said that an ideal time would be during reconstruction. Now, I'm still unsure about reconstruction but one of the reasons is cost. However, he reckons his gap is about $500 which surprised me. Although if I go ahead, it will be a flap procedure and he will bring in a plastic surgeon. That's still down the track to consider.
The other thing I found out yesterday is that Letrozole should provide about 70-75% protection to the other breast for the time that I am on it. Maybe I was told that before but I certainly don't remember it (definitely possible).
What has really sent me reeling is that during discussions, the surgeon pointed out a word on my path report that I had not taken in - pleomorphic. I was fairly happy with my Grade 2, Ki 67 <10 result. I didn't pick up that pleomorphic means that it was a fast growing cancer. It was probably only there for 12 months, maybe 2 years at the most. I remember the onc saying something along those lines but it was brief and didn't really register. That scares me even more as the tumour got to 4.5cm and started spreading within the time frame of usual scanning and it was barely visible. I think I'm in a slight state of shock - more than I usually am.
Apart from all of that, the surgeon is really happy with my progress and he also wants the port out as soon as possible so I'm going in on Saturday morning to have it removed - Yay!
As I said, really mixed feelings about this review.
Earlier in the year, he didn't really want to discuss too much with me about reconstruction and he seemed to be dismissive (the word sounds too harsh so probably isn't the right one) of the possible need to consider taking the other breast. My concern, as I talked to him yesterday, is that it was almost impossible to see on the mammogram and on the CT Scan, and it was much bigger than had been thought and had spread to the nodes when it didn't appear to have from the scans. He told me that that type of mammogram I will be having (in November) is much more powerful than what I had at Breastscreen. But he also said that he could understand my anxiety and that he would be happy to take the other if it got too much for me (he actually said something along the lines of knowing that stats are just stats in the end and if he was in my place, how hard it would be). He said that an ideal time would be during reconstruction. Now, I'm still unsure about reconstruction but one of the reasons is cost. However, he reckons his gap is about $500 which surprised me. Although if I go ahead, it will be a flap procedure and he will bring in a plastic surgeon. That's still down the track to consider.
The other thing I found out yesterday is that Letrozole should provide about 70-75% protection to the other breast for the time that I am on it. Maybe I was told that before but I certainly don't remember it (definitely possible).
What has really sent me reeling is that during discussions, the surgeon pointed out a word on my path report that I had not taken in - pleomorphic. I was fairly happy with my Grade 2, Ki 67 <10 result. I didn't pick up that pleomorphic means that it was a fast growing cancer. It was probably only there for 12 months, maybe 2 years at the most. I remember the onc saying something along those lines but it was brief and didn't really register. That scares me even more as the tumour got to 4.5cm and started spreading within the time frame of usual scanning and it was barely visible. I think I'm in a slight state of shock - more than I usually am.
Apart from all of that, the surgeon is really happy with my progress and he also wants the port out as soon as possible so I'm going in on Saturday morning to have it removed - Yay!
As I said, really mixed feelings about this review.
15 Replies
- Well i had an aggressive grade 3 Her2 Es+ bc with a ki67 rate of 69. Pretty darn scary. My mammogram weeks before was clear. I've chosen to never reread my pathology now or over analyse every part. We've done all we can. The cancer is now gone. We are on appropriate treatment to reduce recurrence. Thats about all we can do.
I chose a bilateral mastectomy due to family history and breast density. I am well aware though that a new primary in the other breast can be a completely different type of breast cancer and not necessarily the same.
So I guess it's now about the head games. If you want the other off do so with reconstruction. Meanwhile the time now is to switch your brain to thinking of yourself as a woman who HAD breast cancer and now is a SURVIVOR. Simple language change in how we think and speak really starts to help us believe.
I recall my first exam after treatment. It was the first time where they really felt out my nodes along neck and collarbone etc. It was confronting. As the appointments get further apart it gets more unsettling too...again more adjustment...and belief of being one of the many still here thanks to modern medicine.
As time passes you'll start to focus on the living again and the daily struggles of normal life rather than only thinking about what if. It will happen but you are the one in the drivers seat steering your thoughts...so it's up to you if you take the freeway to get their or keep detouring along the way. Take care. Kath x - How is your friend doing now @Rose18?
- @Sister I can completely understand your worry about the other breast. I recently had a scare with a lump in my remaining breast. Despite this, there is something nice about having feeling on one side. I don’t really have a lot of feeling in my reconstructed breast so the remaining one gives me a connection to the past before my mastectomy on the left.
The fear never goes away. My friend had a double mastectomy and recently had cancer return in a very aggressive way. Ultimately there are no guarantees. It’s about managing the fear of recurrence, which is still a battle for me. All the best. - @zoffiel I wanted to ask how work was going- I'm so pleased that you're enjoying it!
@kmakm I do trust my surgeon to make the best decisions about testing and, after yesterday, I know that he has very much taken on board my anxieties. But some don't keep on top of new technologies - @Sister I haf a 3D mammogram at my BreastScreen recall. At the first visit I signed a form to take part in a study comparing 2D & 3D mammograms. I was randomly assigned the 2D. I thought it spoke volumes that my recall screening was with the 3D machine...
The sooner the 3D mammogram is standard the better. I was talking to a woman about BC the other day. Her family is littered with early BC deaths across multiple branches and generations. She has chosen not to do the gene testing. Fair enough, I respect her right to make that decision. Instead she has yearly mammograms. I asked her if they were 3D. No. I asked her if she had ultrasounds. No. I said with her family history she should request one next time, that while mammograms are a great tool they're not perfect, and that ultrasounds can pick up problems that mammograms can't. She said her GP was the one in charge of what she had. I said something along the lines of the best advocate for our health is ourselves and left it at that. But I walked away cross with her GP for not recommending the best possible testing for someone clearly in a higher risk category than the general population.
Sigh... - Getting back to work might be easier than you expect @sister. I've spent the last two years being terrified about the last two weeks (if that makes any sense) My new job is similar enough to my old one that I'm not feeling completely out of my depth and I've been pleasantly surprised at how well I've managed being at work all day. The key is to keep busy; there have been a couple of quiet shifts and by 3pm on those days I'm getting distinctly ratty and the last two hours are a real struggle. If I'm busy my feet ache and I'm tired but not desperately so. It's a 40 minute drive each way and I am stuffed by the time I get home, but it beats the shit out of going broke and stressing about being useless. Very good for the brain, being at work. Mxx
- Tomosysnthesis! 3D mammogram.
- Apparently, I will have a higher resonance screen with toxo-something-or-other in November. I asked about MRI but he doesn't seem to think it would be any better than this (I think?) . God, I'm hopeless. I used to be an intelligent woman but you'd never guess it.
- I know what you mean sister. Meeting my new oncologist last week and going over my cancer 'story', she mentioned a couple of pieces of info that I hadn't heard since I was diagnosed. It actually shocked me to hear them again. Accompanied with that familiar little clutch of fear. It served to remind me that hard as it was/is, I am pleased with my treatment choices. No regrets.
My BS's gap was $500 as well.
Fantastic news re the port! Hair, no port, paddleboard ready to go. @Sister 2.0 is looming! K xox - Wonderful that your team will work around you ..... big breaths, small steps .... let them know if it is too much for you at this point in time, once you've started ;)
Yes - it will always be worrying from here on - have you had an MRI since diagnosis?
Maybe you could mention it when you have the port out?
Maybe have it scheduled for the big yearly review along with the (somewhat redundant) MG & U/S? Or just go with the MRI?
It is also something that I am considering - so we have a snapshot of what it looks like NOW - otherwise you really have nothing to compare it with other than existing MGs and U/S - and we DO know that MGs and U/Ss don't suit our breast tissue type. :(
I've already had the one scare a couple of months back .....
