Hi all,My wife's just been diagnosed with Invasive Ductal Carcinoma NST (Grade 2-3) ER+, PR+, HER2- with a 29mm tumour and at least 1 involved lymph node. Needless to say it's hit us like a bus and we're in that dark, foggy place pre-treatment where we have no idea what's coming up next.That said, things have, luckily, moved pretty quickly since the first GP meeting for the initial pathology referral. In the 9 days since visiting the GP, we've had imaging with a mammogram and ultrasound which indicated suspicious findings, then 2 days later a biopsy, followed a day later by the meeting at the GP to get the bad news. Since then we've had our initial meeting with the surgeon at the RBWH, Dr Wong (who seemed very capable, but if anyone else has had him as their surgeon I would still love to hear more about your experience) and some of the MDT. We have our first meeting with Medical Oncology next Friday and the 2 week follow up with the MDT the following week.During the initial discussion our doctor classified this as "Early Stage" cancer (something we're hanging hope on) and said that we would have a number of options for treatment. My wife's family has quite an extensive history of cancer (mostly breast, with some throat / ovarian), however her Mum was genetically tested years ago and is apparently BRCA negative. When asked what we would prefer as a treatment, we just said we'd rather have a double mastectomy to reduce any chances of recurrence later, however when Dr Wong came in, he had a good chat with us and asked if we were making decisions from an emotional place rather than a practical place. His suggestion is to pursue a neoadjuvent treatment course, followed by genetic testing and then surgery, which if the chemo was effective would possibly mean just a lumpectomy rather than a mastectomy as well as potentially saving some lymph nodes.Unfortunately we're very sleep deprived and still in a bit of shock so we're not sure what to do. Basically we see it one of two ways:1. Do the chemo, hope that it shrinks everything (or God-willing completely disappears it) while killing anything else that might be floating around, then do the surgery, then radiation if required.2. Go the surgery, remove everything including lymph nodes, then hit hard with chemo and radiation if needed to try and smash anything that's left.Honestly, I get the idea of "patient-centered" treatment where your opinions and wishes are taken into account, but I know if I had a client approach me as the subject matter expert for a highly technical quote on something they didn't know anything about and I asked them to tell me what they thought would be the best option, I wouldn't have a job. This sounds so dumb, but I just want to say something like "wait a second, why are you asking us what treatment should be? Aren't you the expert???" We want to be very positive and forward leaning with this journey and I feel like we have to have an element of trust in the MDT and the process, but could do with some perspective.Sorry for the wall of text, I blame the lack of sleep!George

Hi George, my surgeon was "in charge" up to the surgery discussion until the cancer history was made known and then she discussed the options with the oncology team..and it was their recommendations she finally followed (with my agreement). Your wife's family's cancer history should have an input so I would draw it up to show the oncologist..they will want to know age of initial diagnosis for family members as well as type if it has not already been done. Once the surgery is over, your wife will then be placed under an oncology team. She will see one oncologist but her case will be discussed by the oncologist team at the hospital. The surgeon's role will be essentially over although appointments for scar inspection will be ongoing (as well as scans and other tests). Try to get in contact with a McGrath Breast Cancer nurse as they can also help clarify your wife's path as you go forward. Keep reaching out to this site as well as there is lots of advice available..

Hey @Mareealso - that all makes a lot of sense. I think our confusion is really around the correct order of things. As you say, best to wait until we meet with the Oncology team and get the full picture. It very much feels that, as you've shown with your own experience, making the right choice is really important and I guess we just need as much information as possible.This waiting is doing our heads in though! I don't think my guts can take another week of it all.

Hi George, you are already on the right track by trying to find more information. I know it is challenging but think of it as a marathon race rather than a sprint and just plan for what needs to be done now. Hang in there!

Hi @arpie, Thanks for the message, we're at Narangba, North of Brisbane so the drive to the RBWH from here isn't too bad, probably 45 minutes on average, it's the parking that's the real wallet emptier so far at $40 odd a day 😕That's really helpful news about the ongoing consults over the next few years. It's great to get a real sense of what the new "normal" is going to look like for us.We actually have had a holiday to Japan in late March / April 25 basically booked and mostly paid for for months now and of course we're devastated that, depending on treatment etc, we may not be able to make the trip. That said our doctor worked out a really rough schedule and she said "don't cancel anything yet", so we're hoping that we can crush through the treatment and come out the other side ready to have that reward of an amazing holiday.We've actually just come back home from a lovely day out with the kids, we did a really energetic 9KM bush walk around the Ewan Maddock dam up on the Sunshine Coast. It was pretty hard going at spots but was lovely to be out in the fresh air. I'm convinced that, along with a great diet and positive attitude, exercise will play a key part in us having a better outcome. Rebecca is going to speak to her GP tomorrow about getting a management plan in place with a referral to a local Exercise Physiologist who can start to work with Rebecca on an exercise plan before, during and after treatment.

Hi all,Quick update. We've now seen Oncology and they were really good and answered all of our questions. We have an official staging of 2B, grade 3 Early Stage BC with only the tumour and a single lymph node being found to be active on the PET scan. They did highlight a couple of other hotspots on the scan, but said it was a low probability that these were related at this time. So, the plan is now an ACT regime starting next week, with biweekly doxorubicin / cyclophosphamide x 4, followed by 12 weekly rounds of Paclitaxel. Rebecca's Ki67 is on the high side at ~50, so we're not sure what that means for the outcome, but we're hoping that despite that, the chemo will devastate this thing and we can move onto surgery and then onto the rest of our lives.Thank you to everyone for your thoughts and prayers so far, please continue to send good vibes while we continue to fight and beat this thing ♥️George

Intro + Neoadjuvant or Adjuvant Chemo?

30 Replies

byo_boy
Member
7 months ago
Hi @veenaga - thank you for your message and advice - I actually did forget about this important part of the process, so appreciate this.

My wife is a Clinical Nurse who, up to her diagnosis, worked in a local public hospital, so has been fortunate to be very well supported, both financially and emotionally by her colleagues. She has, as a part of her superannuation, access to income protection - something that (as you very correctly suggest) we started the application for immediately. The biggest hurdle for us in getting the income protection payments approved was the fact that her superannuation's default was a 90 day waiting period instead of a 30 day one, so we had to just suck that up a bit - that said, she is a very dedicated worker and had so much sick leave banked up that she's been able to take a few months off on leave until her income protection kicks in, so we've not had much of a gap.

I think the main takeaways for us in applying for and receiving income protection are:
Check your waiting period today, even if you're not thinking of accessing income protection. That extra 30 or 60 days can make a HUGE difference financially.

Apply as soon as you can.

Read the application thoroughly and make sure you have all the documentation and information required before you apply. Speak to your employer and medical team and let them know that you're going to be sending in forms for them to complete ASAP - you don't want to be waiting for weeks because your HR department are sitting on the form. Follow up with them regularly to make sure they're getting it done.

Take any help you can get - we were assigned a personal case manager and her role is to not only help us through this phase, but also to work with us to get my wife back into work in a safe and healthy way. We've paid fair premiums and so we're going to lean on them and take advantage of every service or assistance they can offer.
Couldn't agree more on the Public System as well - we're fortunate to be living near enough to commute to the Royal Brisbane Women's Hospital and have had all appointments there. We've met and been taken care of by such dedicated and amazing people who we have grown to know quite well - it also helps to have all the team under the same roof and every facility we need is in the same place which saves on time and data sharing hiccups. In terms of costs, we've not paid a cent for our treatment so far - in fact the only things we've paid for are a few pharmacy items and a portacath insertion which we paid for privately due to massive waiting times in the Public System (well worth it, and there's still a large Medicare rebate so still relatively affordable considering the benefits it brings). The only real ripoff - which I think I've already mentioned - is the cost of car parks and the fact that our appointment schedule means we don't qualify for any concessions. That said, we've found a smaller car park only 5 minutes away which is literally half the price, so even that's been manageable.

Thank you so much for your message, that's great advice - I hope you're travelling well and that you have an amazing day!

George
veenaga
Member
7 months ago
Sorry to hear about this ride your wife and yourself is now on.

Advice on financial stuff. If you find it helpful. It help me heaps after I got diagnosed.

I don't know if your wife works or not or her age but if she has Income protection insurance through her superannuation I would get her to apply for asap. It will help with the financial drain. It can take months to be approved. Also, I suggest to go through the public system - Medicare will cover all (majority ) of costs. You can still see private docs that accept public patients. This reduces the financial burden.

Parking & travelling costs add up. Speak to your wife's medical team about this and definately utilise the information they give you. Cancer council hotline. Breast Care Nurses, medical onc and rad oncology team and all the other new special people you will meet along the way.

I live in Adelaide, single and 52 so I don't know if it helps
Katie46
Member
7 months ago
Hi George and Rebecca, what a relief it must be to get such good news, and that the journey has been manageable. I found the advice and support on this website very helpful as well. All the best for your ongoing treatment. Katie
byo_boy
Member
7 months ago
Sorry, not sure why there's multiple posts. @Mez_BCNA, are you able to please remove these duplicates?
Thanks!
George
byo_boy
Member
7 months ago
Hi everyone, thought I'd just take a sec to give an update on our situation - it's always good to hear how people are going, so here we go!

We're now just over halfway done with neoadjuvant chemo, having completed all of the AC rounds and 5 out of 12 Paclitaxel rounds. The AC was definitely tougher than the Taxols with more notable side effects like constipation, heartburn a little nausea and obviously hair loss, but Rebecca made it through that OK and is now being treated much less harshly by the Taxols with, so far, no signs of neuropathy or any damage to nails, skin etc.

We had an ultrasound last Monday to check on the response to the chemo and met with our surgical team on Wednesday to discuss the results. I'm very happy to report that Rebecca's primary tumour has shrunk by more than half and the lymph node that was cancerous now shows "normal morphology", i.e., the cancer appears to be gone. This is obviously great news since it now means a much better chance of full recovery with a minor lymph node excision, rather than a full axillary dissection and a lumpectomy instead of a mastectomy, which is where we thought we were heading before we started treatment. In addition, all of the genetic panels have come back negative, so everyone is absolutely stoked. We've now got a surgery date booked in early December and are hoping to have a nice Christmas with radiation done and dusted by mid-February.

I can't thank everyone here enough for all the support we've had, both publicly and privately. We know we're going to get a great outcome and having good people to lean on has played a big part in our success and positive mindset so far.

If anyone's interested, there are a couple of things we've done which may or may not have helped including:

1. Exercise. Exercise. Exercise - We've been doing daily walks and physio-based training almost every day for the last few months. Sometimes only a short walk of 2-3KMs, but have regularly done 5-7KM walks, sometimes only a day or two after treatment. Obviously your mileage will vary depending on how you're feeling, but I can't emphasise enough just how much of a difference this has made.

2. Diet - Healthy eating and LOTS of fluids - water, fresh juices etc, all go a LONG way to helping the body stay hydrated and able to cope. Lots of salads, veggies and protein (chicken, fish, lentils etc) have helped - we've also cut right down on red meat and processed meats like sausages and bacon 😢 There has been some challenges with loss of taste, especially during the AC rounds, but we adjusted our meal plans to accommodate for that by introducing more flavourful meals.

3. Sleep - Despite the premeds and steroids, our treatment days have been long, with multiple hour commutes to the hospital, so by the time we get back it's not hard to fall asleep. We've aimed for a minimum of 6 hours, but try for at least 8 a night and, for the most part, seem to be managing.

4. Supplements - We've avoided all supplements (as well as things like caffeine, aka coffee, tea, coke etc), except for Vitamin D which gets taken every night, along with some magnesium after a blood test recently showed a bit of a drop there (subsequent tests have been good, so we'll probably stop those once they're finished). Pantoprazole has been a life saver for preventing reflux and heartburn and gets taken almost daily as well, but other than that, given the good blood results we get every week, the nutrition seems to be keeping up.

5. Documentation - We write everything down, from consult notes to treatment timings etc plus a daily log of vitals like fluid intake, temps, meals, side effects etc. None of it has really been required, but it's good to see any patterns emerging before they become an issue. A good example of that was how we noticed Rebecca's skin was getting more itchy over certain days and that helped us manage things with applying more regular moisturising etc.

6. Advocacy - Always speak up in your consults. We've realised that the Public System, as amazing as it is, is massively under staffed and under resourced, so we've had to often act as our own best advocates in asking questions, pushing for scans, discussing side effects etc. There's been a few times where if we hadn't spoken up the doctors would have missed something like a blood test number or similar. It doesn't take much time and if your notes etc are on point you will often be more organised than your consultant.

7. Gadgets, pills and potions - We've tried not to go too crazy with random Internet tips, but some of the things that have worked are definitely soft toothbrushes, regular mouthwashing with a gentle mouthwash, nail strengthener, moisturizer and sunscreen plus just general hygiene tips like weekly bathroom cleans and bedding changes. We've also been using ice gloves and booties during the Paclitaxels (much to the amusement of the great staff in Oncology!) - we're not sure if it's doing anything, but it can't hurt to try and so far, so good!

I hope that helps someone out there - when we started this journey, our biggest fear was the unknown and now that we're getting on with it, hopefully we can be a little beacon of hope for others who might be struggling as well. We're obviously nowhere near done, and recognise the road ahead is still going to be pretty arduous, but we know now that a positive mindset, good moral support and a great medical team can definitely help carry you a long way.

Hope you all have a great week - I'll definitely be back with another update soon.

Take care ❤️

George
byo_boy
Member
7 months ago
Hey @GorgyS, thanks for the reply and for the link. Will definitely check that out. Information is an asset that has helped us and is one of the few things we can control, so I appreciate the heads up.

Have an awesome day!

George
GorgyS
Member
7 months ago
thank you, George for the update. It’s great to hear that Rebecca is progressing well with her treatment. What you and your wife have undertaken throughout this journey will likely be helpful to many members of the network.
I recently heard on TV about heartburn medications, including Pantoprazole, being under review as part of a class action. Apparently, medications for managing acid reflux are being investigated. I’ve decided to stop using this medication until I consult my doctor.
Here’s a link if you want to check it out: PPI Stomach Cancer & Kidney Damage Class Action Investigation | Shine Lawyers
I know it’s still under the investigation, but I think I’m entitled to be a bit paranoid.
byo_boy
Member
10 months ago
Hi all,

Quick update. We've now seen Oncology and they were really good and answered all of our questions. We have an official staging of 2B, grade 3 Early Stage BC with only the tumour and a single lymph node being found to be active on the PET scan. They did highlight a couple of other hotspots on the scan, but said it was a low probability that these were related at this time.

So, the plan is now an ACT regime starting next week, with biweekly doxorubicin / cyclophosphamide x 4, followed by 12 weekly rounds of Paclitaxel. Rebecca's Ki67 is on the high side at ~50, so we're not sure what that means for the outcome, but we're hoping that despite that, the chemo will devastate this thing and we can move onto surgery and then onto the rest of our lives.

Thank you to everyone for your thoughts and prayers so far, please continue to send good vibes while we continue to fight and beat this thing ♥️

George
arpie
Member
10 months ago
All the best for the PET results, George & Rebecca. Try & keep busy in the mean time - cos the waiting really sucks. :(

Re supporting the parents & other friends - consider doing a weekly or fortnightly email to everyone, so you don't have to keep going over the same old info every time someone makes contact .... and if/when you need some 'down time' - maybe suggest that they not contact you directly - that you'll be getting back to them with regular updates. (Some people open a private Facebook page & only invite those who you want to be in the discussions in the group.)

It will take some of the pressure off both of you, as I am guessing you are the 'gate keeper' just now, George - fielding all the calls so far ;)

take care & all the best
byo_boy
Member
10 months ago
Hi @June1952 - thank you for checking in. You know it's weird, while we were in the Hospital we felt oddly calm and in control and Rebecca did really well; she's the strongest and most caring person I know. Now that we're back home, we're just trying to maintain a sense of "normal" while now waiting for the results.

My gut feeling is that the scan will be all clear and we can get on with beating this thing, but I suspect I'll probably still have a rough night regardless. One of the harder things that's happening now is being able to support other people as well, i.e., parents, etc - I'm trying to be very proactive there too.

I really appreciate the message - we'll let you know how we go, fingers crossed + thoughts and prayers + good vibes for a good outcome!

George