Get it out now or wait and think?

Sliv

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 

NettyRuz

I had some great advice once and that was to act as though you are the CEO of your treatment - i.e. maybe in this case you can call the surgeons office and just say, help, I need more info and would like to talk to someone. IS there a breast care nurse you can access? Making the decision is hard but if you want to do all you can to prevent it coming back, then ask them that "what is all I can do to stop this happening again?"

arpie

Gosh - that makes it hard @Sliv - usually you see the surgeon & they check you out personally (mine did another ultrasound whilst I was there) and they usually make sure you have a sentinel node test (to see which nodes the tumour is draining to - mine was done the day before my surgery.) At my first (and only meeting) before surgery - I basically said to my surgeon to 'go for the lumpectomy' but if he found anything that needed 'more removal' ... then to go the whole hog - so I didn't really know til i got out of surgery, the extent of what he had done! 

Are you in the public or private sector for your surgery?  If going private (or public, I am guessing), you could see if someone else is available to meet up with first, before the surgery .....  whether it is available next week or the weeks following ... 

It is unlikely to grow bigger in the next few weeks - Maybe give our Helpline a call on 1800500258 TODAY as they are not open on the Weekends  ... they may be able to guide you in your decision making.

I know that I wanted mine GORN as soon as possible and it all kicked over pretty quickly, once it started ..... I saw my surgeon on the Mon, had the node test on the Tues & had the beast OUT on the Wed, staying in overnight. 

Re Recurrence - it will be your Medical Team's main purpose for you to NOT have a recurrence - so the surgeon always takes a 'bit more' than the expected size of your tumour, to get 'clear margins' (ie no cancer cells in them) ....

Your ongoing 'game plan' will depend on your pathology results & that can take a week or so after your surgery to come thru (make sure you ask for copies of ALL results & reports - and that they also go to your GP as well as the Oncologists.)

take care & all the best xx

GorgyS

Before my diagnosis in September 2023, I knew nothing about breast cancer because I actively avoided seeking information. Despite this, I ensured that any changes in my breasts were checked. Being informed became crucial for me (and for the medical team). Since the beginning of my journey, I have requested a McGrath nurse and have gone through all the written information provided to me (still ongoing as there is a lot). I didn't want to bother McGrath nurses because they were busy; however, whenever I had a question, they were absolutely amazing. I spent a significant amount of time on the BCNA website and online networks. This is why I decided to stop working immediately—I needed time to sit in front of the computer and gather as much information as possible. At each appointment, I had my questions written down. I did not hesitate to ask any questions, even if they were silly. Once I know my care plan, I plan to return to working from home. It's crucial to obtain all the necessary information, especially about recurrence, which many of us fear. The medical oncologist advised me that I need chemo, radiation, and hormone blockers for 10 years because of high possibility of recurrence. I already had a lumpectomy and re-excision with clear margins at the end. So far, I have been following all the recommendations from my medical team. Being informed empowers me to make decisions. I truly believe that without BCNA and the online network, coping with this situation would have been much more challenging.

PaddiB

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

Sliv

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 

Afraser

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. 

GorgyS

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. 

cranky_granny

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. 

NettyRuz

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. 

NettyRuz

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!

Sliv

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

Afraser

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! 

MrsMorrisey

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? 

MrsMorrisey

I didn’t have an MRI. I had CT scan and bone scan. Then had lymphosinctigram on the day of the surgery. 

Everyone has a different journey. Can be very confusing. Hang in there @Sliv

cranky_granny

Hey Sliv. Your brain really is in overdrive. I know mine was. Sometimes we can get too far ahead of ourselves and want all the answers at once. There are so many different scenarios and what if’s 
Afraser has given a great answer. 

My Oncologist said to me she cant guarantee i would never get it back or it pop up elsewhere. Though they had done their best with what they knew at the time could give me the best chance. they haven’t found a way of searching the whole body for any microscopic cells floating around. The most important thing is that we don't let that fear rule our live
All the test that are needed will be done before surgery
i left the door open for the surgeon to take the whole breast if that was what was needed. 

Ask straight  up at your next appointment does a full mastectomy give you better outcome. 

You can always ask. What happens your first line of  treatment is finished. Eg how are things monitored moving forward. 

If your worries and concerns are getting to much call our helpline first thing Monday morning 

1800 500 258 9am to 5pm. Monday to Friday 

Also have a look at Charlotte Tottmans podcast they are very good.