Forum Discussion
Intro + Neoadjuvant or Adjuvant Chemo?
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
30 Replies
- 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.
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 - 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.
- 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 - 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
- Sorry, not sure why there's multiple posts. @Mez_BCNA, are you able to please remove these duplicates?Thanks!George
- 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 š¢ 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 ā¤ļøGeorge
- 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
- thank you, George for the update. Itās 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. Iāve decided to stop using this medication until I consult my doctor.
Hereās a link if you want to check it out: PPI Stomach Cancer & Kidney Damage Class Action Investigation | Shine Lawyers
I know itās still under the investigation, but I think Iām entitled to be a bit paranoid.
- 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 ā„ļøGeorge
- 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 - 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
