Forum Discussion
Get it out now or wait and think?
Hi, I'm newly diagnosed hormone positive her2 negative. I had my first appointment with my surgeon and was told my diagnosis a week ago. I was told to consider lumpectomy with radiation or mastectomy. I then was sent for contrast MRI and told the next day they had not received full MRI report but looks as expected so now they were ready to lock in the surgery. I have a million question and am particularly concerned about recurrence so was hoping for more guidance from my surgeon regarding my decision on the type of surgery may be best for now and possible lowering risk of recurrence (so I can limit the dread of going through this again) I still haven't been able to speak to the surgeon and have been given surgery dates to choose from without a plan or even knowing which surgery I will be having. One date is in a few days and the other over a month away. I'd love to hear how people have dealt with making decisions between surgery options whilst dealing with either the pressure to get it out as quickly as possible but perhaps not having time to think through the surgically best option compared to dealing with the long wait and constantly changing your mind while you're waiting, reading more info to educate yourself but also terrifying yourself. Thanks Sliv
23 Replies
- Hey @Sliv.Sorry to hear you’ve got so much going round in your head.I was never given the option as my breast surgeon had a phone consultation with me prior to my initial in person consultation because it was the Xmas new year break and she was wanting to touch base prior.She obviously had my MMG/US and biopsy reports because she said over the phone she could do a lumpectomy and not remove the breast.I had my surgery last Wednesday. One month from diagnosis.It seems unusual that you were given an option or is that what happens to others??
I went through the public system.Were you given a choice if your breast surgeon?
Do you know the type and size of your cancer? - One of the reasons for having chemotherapy is to try and flush out any cancer at the cell level. Tests can determine if there are cancerous growths elsewhere but not necessarily at a cellular level. There may well be none but ascertaining no cancerous cells whatsoever, anywhere, is tricky. On the positive side, some people may have cancer cells that never develop. As knowing if the cancer has already spread is pretty critical, it is likely that there is no evidence of spread, but that’s it. No evidence. I am eleven years NED - no evidence of disease. Not guaranteed not a cancer cell in my body, just no evidence that there is. One of the issues for any one diagnosed with cancer is that you know it can happen, and there are no absolute guarantees it can’t happen again. It’s a line you have crossed. In my experience, it becomes easier to live with as you do
live with it, but it can be disturbing at first. All the more reason to ask every question you want to, but also understand that there may not always be perfect, unequivocal answers! - Thanks everyone. Your advice has definitely helped and made me see I just need to not care about being pushy and ask more questions. I just thought that there would be a little more hand holding from breadt care nurse.
Another question if you don't mind, does anyone know at what point they do a acan to see if it has spread?
I've had an MRI with contrast is that a they need? What if I have to wait a month to get this lump out and then they do PET scan oy to find out its spread? Or would they already know?
Ta
Sliv - Private system does supply breast care nurses btw and yes they can be part time - they can be wonderful so ask for one I reckon!
- I think there is one very important factor here and that is everyone's case is different - there are 3 different cancers in the breast, (in your case hormone positive) the stage you are at & things like clear margins or not. You absolutely need to ask for more info or discussion from your surgeon because your scan and biopsy indicates if they do lumpectomy, wide local or mastectomy and when you do treatment if it all. You need to ask - what is the risk if it's just lump removal. In my case, my margins were not clear and I could have insisted on another wide local excision to save my breast (and I just got a recon anyway and my boob is nicer than ever!) but then the risk for cancer returning was high. The surgeon will absolutely have a recommendation but will also empower you to make the final call. They can't just decide mid-operation if they remove the whole boob or just the lump because it needs your consent. You won't be seen as a pain or the 'annoying patient' if you ask to chat some more, I know it's hard but it is your right to do so. Hearing everyone's story helps but it can be overwhelming and confusing and they are after all their cancer journey not yours.
- Hi there @Sliv welcome aboard the roller coaster that is BC. I too was hormone + in the 90+ percentile. Her- After the team discussion of my tumour situation i was given chemo first in hopes to shrink the bugger of my sternum and loosen it of my muscle and skin. I had my surgery in May of 2017
the following is to make sure that you make it clear that you want it all gone and the best chance of it not coming back
I went into surgery after consultation with the surgeon that they would do what was necessary to remove the tumour. I made it clear that I wasn’t bothered if the whole breast came off.Come out of surgery with breast conserving surgery done. Initial testing while still under that things looked clear.It wasn’t until i was closed up and the detailed pathology came back that there was insufficient margins and the lymphs removed were involved. It was decided that doubling the rads would kill of anything that might be left behind.So went from 12 rounds of radiation to 25 and a wider area of zapping.I don't blame anyone for the decisions. And I agreed to the course really thought that things went well. The pathology results were a shock all round.Best of luck with decision. - I opted for a lumpectomy when faced with the choice between lumpectomy and mastectomy. Opting for a complete breast removal felt too 'invasive,' especially given the recent diagnosis. After the lumpectomy, as clear margins weren't achieved, I was presented with the options of re-excision or mastectomy. Once again, I chose re-excision, and this time, the margins were clear. I'm not sure if I made the right decision, but I have no regrets so far. Only time will tell. My lump was large, and 14 affected lymph nodes were removed. From the beginning of my diagnoses I decided to be focused and avoid any regrets. I did not want to waist too much time on making a decision. I wanted It out and move to the next stage of the treatment.
- Not having any regrets is important in your treatment and recovery - often that’s about doing treatment even if you dislike/fear it to give yourself the best chance of recovery and no recurrence. But so is not doing something without adequate time to think about it and get the information you need. I was lucky - my surgeon discussed my tests in detail and although I had surgery three days later, my
options were clear - a partial
mastectomy or a full mastectomy, with the latter recommended. At 67, a partial breast had little appeal! But had I been offered a lumpectomy, I would have needed more time and information. Four weeks seems an eternity facing a breast cancer diagnosis, but it’s not long in the scheme of things. If you are uncertain, and can’t get the answers you need immediately, then at least ask about the real risk of waiting longer. It’s possibly quite small. Best wishes. - Thank you for all you advice and thanks for sharing your stories. May I ask if you were offered a mastectomy or lumpectomy followed by radiation at what point did you make that decision and then was the surgery explained to you and recurrence rates etc?
I feel like I have to make this choice first with limited information and if I dont hurry and make a decision I miss my chance at the first surgery that was offered then have to wait. I'm going through private system but feel it might have been quicker or vreadt care nurses more accessible in the public system. My surgeon has a breadt care nurse but she works part time. Is this normal?
Thanks
Sliv - Hi Sliv It sure is a time of turmoil! I was diagnosed in August, 2023 with Early Stage ++- (had no visible signs - it was picked up in my routine mammogram). I was offered a mastectomy or wide local excision followed by 3 weeks of radiation followed by hormone blockers. I went through through the public system at Fiona Stanley Breast assessment Clinic in WA. The surgeon spent over an hour with us explaining what she planned to do and why and gave us diagrams etc. She wanted to do the surgery straight away but I had a few things booked and paid for so delayed for 18 days with no problems. I agree with earlier comments about contacting the surgeon's office and explaining you have questions you need answered first. I was able to do this at any time through the nurses at the Breast Clinic too. It is a time of so much upheaval - I had no symptoms or signs so it is still a period of disbelief/amazement that it's happened. You hold the power - it's your body. I was intially told by the doctor doing the ultrasound that what I had was a lymph node so she suggested I just wait and get it checked in 12 months. I requested a biopsy instead and the cancer was discovered. Please take care of you. Paddi
