Intro + Neoadjuvant or Adjuvant Chemo?
byo_boy
Member Posts: 39 ✭
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
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Comments
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Hi, Just read your story and my heart goes out to you...all of us here have been on the decision making treadmill. Like your wife, my family have been impacted by familial cancer as well and this adds an extra element to consider. Out of the seven girls (sisters) in my family, six of us have been diagnosed with breast cancer over the years. Genetic testing finally revealed the BRACA 2 gene ..but, like your wife, not from our mum. I am also Er+ and PR+ and this has dictated my ongoing treatment course. Due to the BRACA2 involvement, I followed my oncologists advice (not my surgeon) and ended up choosing a mastectomy with sentinel lymph node removal (only 1 was removed) to minimise potential lymphoedema issues later on. I then underwent chemotherapy and am now on medication that cuts down Estrogen and Progesterone production (Aromatase Inhibitors) I have also had ovaries and fallopian tubes removed as has two other sisters (recommended for BRCA 2 carriers and all of us have now had double mastectomies). The other three sisters chose lumpectomies and radiotherapy but unfortunately, cancer metatasized later and we have lost them. With respect, I would be seeking an oncologists opinion to add to your knowledge. My surgeon initially recommended a lumpectomy, but changed her advice upon finding out about the BRCA 2 connection. I will be thinking of you and your wife and hope it all turns out okay..3
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Hi @Mareealso - thanks for your advice. I hadn't really considered that the oncologist might have different advice than the surgeon. I assumed the surgeon was basically leading the MDT and just took input from everyone else.
I'm really sorry to hear about your sisters, this really is an incidious disease
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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..2
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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.2
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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!1
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Hello @byo_boy. I strongly agree with @Mareealso to wait until your appointment with the oncologist to have more detailed information before making your decision.
If you put 'neoadjuvent treatment' in the search bar (see the top blue banner) and click on 'discussions', then go across and select 'newest' you will find a few posts re this option.
Personally, I was in a different situation with high grade extensive DCIS and as I lived rurally it was important for the medicos that I be treated promptly before the beast hit the lymph nodes. I had no options given, it was just straight to mastectomy. Fortunately I had kept up my private health so was done quickly. Whilst my body may not be pretty (the general surgeon was no tailor) I am grateful that they put a stop to any spread.
I am assuming that RBWH is the Royal Brisbane Women's Hospital ? Hopefully others who have been treated there will come on and give you some further information about their treatment.
All the best to your wife- you are a wonderful support.
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@byo_boy Well done for stepping up to the plate & supporting your wife with her diagnosis & quizzing us & the Drs on what is happening & why.
My own surgeon had told me I would be on Tamoxifen (but he isn't a Medical Oncologist and was wrong - cos I was put onto Letrozole & then had 2 other changes as well - none of which were Tamoxifen!)
Your wife will also see a Radiation Oncologist (as well as the Medical Onc for Chemo and the Hormone Suppression meds) ... and she will probably see a lymphodema specialist as well, to help prevent problems in that area (usually showing specific massage techniques and exercises to limit any problems.)
Yes,the surgeon's role following the surgery is virtually over (after making sure the wound is healing OK & everything going to plan) ... and then it is on to both the Oncs that your wife will be seeing more of over time.
Consider recording your visits on your mobile phone, as it is very difficult to remember everything that is said on any given day. Then, if needed, you can go over it again, at home.
take care & all the best xx. Yes, the waiting really sucks. 1 -
@June1952 - thank you for your insight, yes the RBWH is the Royal Brisbane Womens Hospital, which we're attending as public patients. My Mum had treatment for DCIS through the Breast Clinic there some years ago and had a great experience, so while it's a little out of our way, we're going to happily commute in as much as it takes. I'd definitely love to hear anyone else's personal experience with the hospital.@arpie - I appreciate your message. That medication chop and change is a really clear example of just how things evolve so quickly over the course of treatment - our next hurdle is getting a clear PET scan, something I have a gut feeling will be OK, and then once we've met and chatted with all the other team members, we go hard and positively into treatment...1
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@byo_boy .... If you add you 'general location' to your profile ... members may be able to steer you to different services that may be available, closer to you.
In 'commuting' to BRWH, how far do you have to travel? Qld (and all states) have a 'Patient Travel & Accommodation Scheme' that helps reimburse fuel & some accommodation costs for patients having to travel 100k or more for treatment .... the hospital will have the forms that both your GP & Specialist will have to fill in.
Your wife will be seeing the surgeon at least once a year for 5 years for continued 'surveillance' (which is good for peace of mind) and to bring up any other concerns she may have .... so she'll be seeing the Medical Onc & Rad Onc on a more regular basis over the next year whilst her active treatment continues (and for 5 years too, often just yearly for the last 2-3) ...
There is a wonderful organisation called OTIS (https://www.otisfoundation.org.au/directory) who have 'holiday homes' available to those with BC and their families to visit for a bit of a treat ... check it out & start looking into it, as it can take some months to arrange a booking .... so you have a 'treat' to look forward to, after active treatment (chemo/radiation) is finished xx
take care & all the best
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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.2
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Re the $40 a day parking charge - next time you are there, ask at the front reception desk about concessions being available for ongoing cancer 'outpatient clinic' visits ....
I know that when I was visiting daily at a major Sydney Hospital with my husband for cancer treatment, they printed out a voucher that allowed me to come & go without the massive fees ...
Check out this link below as it mentions a couple of concessions ..... but definitely ask at the desk too, as they'd be very aware of any concessions available to you.
https://metronorth.health.qld.gov.au/rbwh/patients-and-visitors/parking-and-transport
Excellent re the walk around the dam .... you have some lovely areas like that up there!! Exercise is good for the soul as well as the body! (Tho it is raining AGAIN down here as I type! grr)
All going well, you'll be able to go to Japan next year!! Your medical team will do their best to make sure you get there!! Keep your eyes on that end goal!! I treated myself to a week at Norfolk Island after I'd finished my active treatment!
Are you your wife's 'official carer'? If not, look into it, as it may reduce costs further for you in other areas, too. Generally, a 'referral' from your GP will kickstart the process. In NSW, an official carer gets free vehicle registration too .... and it may enable you to access the concessional parking 'easier' too (which may range from free parking to a lower priced concession than the $40!)
take care2 -
@byo_boy I had neoadjuvant chemo and found it to be quite positive. Two treatments in and the Onco could not find the lumps and asked me if she had the correct side! By the time I got to surgery (mastectomy) the biopsy they did on the tissue showed the chemo had completely killed off the cancer cells so I knew it had worked. The only reason they ended up doing the mx was because there had been a complete haze of cancer across the whole top of one breast plus the other three spots. I just did what my surgeon recommended. All the best with your decisions.1
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Hi @Blossom1961 - thank you for your message. This is the hope we have that should we go down that path we'll have a similar experience. A close friend had a very similar journey to us in NZ and she would practically skip in to her next treatment knowing that her tumour was physically shrinking in front of her.She wrote a really good blog post which I'll share here for anyone who's interested:1
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Hi there @byo_boy...I'm so sorry both your wife and your supportive self have gained admission tickets to our not-so sought after group. My story is this. I was aged 57 in 2016 and was diagnosed with Stage 3, Grade 3, Triple Positive, Multifocal (more than one little sod) in the left breast, at least 1 axillary node positive and so called 'abnormal geography' in the right breast. I was told I'd have neoadjuvant chemo, followed by surgery. I was not a candidate for radiotherapy due to a different medical condition. To be honest, being a public patient, I was rather sceptical about the sequence. I thought that their surgery lists were waaay too long, and so they were going to do the chemo to keep me in a holding pattern, as it were, until they'd do the surgery. My first instinct was give me a weedwhacker and I'll do the job myself. Eventually sanity (well my hubby would question that) prevailed and I got on with it. The pathology for the removed left breast and full node clearance showed no active cancer cells, only the 'empty tumour beds'. The removed (at my request) right breast showed numerous areas of abnormal cells with a dark history of going bad...so I felt good that I'd pushed for both and got rid of it before it too went feral on me. So for me, I trusted my team...after all this is their bread and butter in their chosen medical speciality...and my result was good...in fact excellent. I still remain NED (no evidence of disease) and just keep on keeping on. My very best wishes to you both and hope that all goes well with treatment. Best wishes...Ally.4
