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

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?"

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 dolive 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!

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

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.

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 liveAll the test that are needed will be done before surgeryi 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.

Get it out now or wait and think?

23 Replies

AuntyK
Member
2 years ago

Sliv said:

Another question if you don't mind, does anyone know at what point they do a scan 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

With regards to seeing if its spread, for me (and I think this is standard?) they remove a lymph node or 2 to check this, instead of doing further scans. I've been told my next routine scan will be12 months since I was diagnosed. Now that does seem like a long wait.

Regarding the wait for an appointment. ER+PR+ HER2- here. I went to my appointment expecting to be offered a lumpectomy & radiation, only to be offered a double mastectomy and told by the surgeon' you know in your heart what you should do' we thought, umm, we have no idea what we should do with that suddenly being sprung on us.
So instead of booking in the lumpectomy at that appointment, we left to consider and weigh up both options.
We got a second opinion, talked to some people and proceeded to opt for the normal procedure for my diagnosis, being lumpectomy + radiation.
However, having that option thrown in to the mix and having to go away and think about it meant my surgery didn't take place until 2 months after diagnosis (public system).
I felt quite anxious at the time, just wanting it done worrying if it would grow. Which it didn't - it actually shrunk (or was mis-measured) by a third.
Having gone through this a big lesson for me is, in hindsight I am actually SO glad I had time to take it in, research, investigate options, and learn about treatment, and side effects.
Having that time was actually a blessing, it's very easy especially in private to be offered extreme options, possibly under pressure, with decisions made in fear while you're still in shock and find yourself having surgery just days later. Just my perspective from my experience.

If it was a more aggressive type of cancer, you would probably have been given that first appointment without a choice.

I hope everything goes smoothly for you.
June1952
Member
2 years ago
@Sliv - I sent you a private message. Look at the top right of the screen and you will see an envelope next to your profile picture.
PrisMay1
Member
2 years ago
@sliv go to the Groups tab, click on Choosing Reconstruction and log in again using the same user name and password. You should get a link once you’re approved to join the group.
Sliv
Member
2 years ago
I hope you continue to recover quickly @PrisMay1 and thank you again for sharing.
I have joined the reconstruction group and been accepted but I don't know how to access the group. I actually thought I'd left this message within that group.
Any ideas how I access it?
Ta
Sliv
Sliv
Member
2 years ago
Thanks for checking in @MrsMorrisey.
After lots of chasing my surgeon for some answers and being made to feel like I was hysterical and annoying, I have an appointment in a few days so I can FINALLY ask my questions. I've made an appointment with another surgeon for the following week. I know it stretches out the process but I have just wasted a week and a half with with no action or answers so I'll see if I get a better feel with the second surgeon. I know I won't get different options, I'm just needing some guidance.
At this stage, purely from my own research and speaking to people who have recently gone through it, I'm leaning toward double mastectomy. The only thing I have been sure of in this decision is that when this is all over, other than the cancer to be gone, I'd like both breasts to look and feel the same.
Ta
Sliv
MrsMorrisey
Member
2 years ago
How’d you go @Sliv?
MrsMorrisey
Member
2 years ago
Yep. You need to call her on Monday and make another appointment.
Sounds similar to mine but mine wasn’t as big on the US but obviously they can’t tell until it’s out.
Apparently my KI67 is high but she told me not to think about that because it’s still a controversial test and not everyone gets that test done.
So I stopped thinking about it.
I did get myself in a lather because I’d read higher Ki means chemo but she said not necessarily.
I listen to her not google. And frankly I’m sick of worrying about it now. It’s too exhausting.
Def call her Mon xxx
Sliv
Member
2 years ago
Thanks @MrsMorrisey, I'm going through private system and chose my surgeon after she came highly recommended. But now I'm having doubts.
My cancer is hormone positive her2 negative. I have very high percentage of oestrogen and progesterone but low Ki67 at 15% (whatever that means) the tumor is 15 x 18 x 17 invasive DCIS.
I wish I hadn't been given the option because I just want someone to tell me what to do.
Argh, this decision makes an awful situation even worse.
Ta
Sliv
cranky_granny
Member
2 years ago
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.
MrsMorrisey
Member
2 years ago

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