Forum Discussion
Thank you and Hello
I’ve been a member of this unique club since diagnosis in Jan 2019 and as some have written, chose not to be an immediate contributor. I feel moved today to say hello and say a humble thank you to those contributors who have provided some of the most thoughtful, uplifting and honest advice that to members in such angst and crying out for additional support.
My journey todate ...
Mammogram taken in November and would you believe I was rung on Dec 17 to say follow up required to which I said yes sure I’ll come in tomorrow and have a further mammogram. The response floored me - no we are closed tomorrow for Christmas but I’ll pop you in on Jan 10. So I gave my happy Christmas back ... what was the point of telling me prior to Christmas ...
Biopsy confirmed ILC 3cms so Lumpectomy surgery and SNL Biopsy 31 Jan with unclear margins and clear lymph nodes. Further lumpectomy and armpit drain last week with reported clear margins. Unfortunately I am producing fluid at a rate of knots so 3 drainings later I now have an infection and purple armpit. My surgeon and GP are just lovely and so responsive - even ticking the bulk bill box when I’m going private!.. But it’s wait wait wait as we all experience that is the absolute worst ! and having spent most of my life a woman in control of most things - WTF !!
So, I’ve done a real head spin on my diet since diagnosis, not that it was bad or that I wasn’t into exercise. Was able to get to the gym 2 days after my first lumoectomy without issue. But I’ve rehashed what I can and can’t eat so many times having made the mistake of referring to DR Google. No red meat, no almonds, yes almonds, no soy, yes soy, no tomatoes, only organic, no dairy, no sugar, no alcohol, no fuji, apples, only walnuts in shells... the list goes on and on contradicting on... in the meantime I’ve almost destroyed the only real stable aspect in my life - my wonderful supportive partner of 18 years.
I guess we all process in different ways and mine has been to desperately try and control my physical state. Just letting go is 3 simple yet very condescendingly complex words.... I am trying to go with 1 step at a time and at times so scary ...
I marvel at those of you juggling work, juggling children responsibilities or having no immediate support around you and yet you are getting there...
I see my Oncologist for the first time bright and early Monday morning and I hope for minimally invasive treatment ....
1 step at a time and thank you again ... and yes the club sucks but hey whilst we have joined how lucky are we to have found this space to support one another 💕
My journey todate ...
Mammogram taken in November and would you believe I was rung on Dec 17 to say follow up required to which I said yes sure I’ll come in tomorrow and have a further mammogram. The response floored me - no we are closed tomorrow for Christmas but I’ll pop you in on Jan 10. So I gave my happy Christmas back ... what was the point of telling me prior to Christmas ...
Biopsy confirmed ILC 3cms so Lumpectomy surgery and SNL Biopsy 31 Jan with unclear margins and clear lymph nodes. Further lumpectomy and armpit drain last week with reported clear margins. Unfortunately I am producing fluid at a rate of knots so 3 drainings later I now have an infection and purple armpit. My surgeon and GP are just lovely and so responsive - even ticking the bulk bill box when I’m going private!.. But it’s wait wait wait as we all experience that is the absolute worst ! and having spent most of my life a woman in control of most things - WTF !!
So, I’ve done a real head spin on my diet since diagnosis, not that it was bad or that I wasn’t into exercise. Was able to get to the gym 2 days after my first lumoectomy without issue. But I’ve rehashed what I can and can’t eat so many times having made the mistake of referring to DR Google. No red meat, no almonds, yes almonds, no soy, yes soy, no tomatoes, only organic, no dairy, no sugar, no alcohol, no fuji, apples, only walnuts in shells... the list goes on and on contradicting on... in the meantime I’ve almost destroyed the only real stable aspect in my life - my wonderful supportive partner of 18 years.
I guess we all process in different ways and mine has been to desperately try and control my physical state. Just letting go is 3 simple yet very condescendingly complex words.... I am trying to go with 1 step at a time and at times so scary ...
I marvel at those of you juggling work, juggling children responsibilities or having no immediate support around you and yet you are getting there...
I see my Oncologist for the first time bright and early Monday morning and I hope for minimally invasive treatment ....
1 step at a time and thank you again ... and yes the club sucks but hey whilst we have joined how lucky are we to have found this space to support one another 💕
35 Replies
- At least you have a plan now and great to hear about the positivity around exercise. Have you decided to use a port ?
- Hi @Scoops
Ive been advised to start chemo ASAP once my fertility stuff is done. two weeks from today should be my start date.
I am doing 4 x AC biweekly and 4x taxol biweekly
I also have stage 2 with one very small bit in a lymph node (all removed).
I hear exercise during is really good and the more we can tolerate the worse for the cancer! As in apparently it hates us exercising and starts to freak out and then responds better to the chemo.
My onc said go for however much I feel I can tolerate.
My radiation isn’t yet decided but probable, my posterior margin was clear but very close. Plus given my age I don’t think they will give me the choice of saying no to be honest!!
Good luck :) keep in touch - There is a mob called inForm in the Eastern suburbs. Not sure what they're like.
- Thanks @Sister - I’ll check it out tomorrow. I’d hoped that I could convince my local gym to adopt a program but they don’t have the physio expertise - they have personal trainers and exercise physiologists.
Thanks for the info 👍 - Sounds like same cancer and same regime as me @Scoops (or have I already said that before - who knows with my memory). I didn't go from hospital to gym but did exercise through most of chemo at the Calvary Rehabilitation Centre (?) in Walkerville. They have a session specifically for bc rehab that runs a few days a week - I think it was called something like "Reconditioning Oncology Program".
- Hey @youngdogmum - In this forum if we can help one another that’s a positive - so Yes, ILC stage 2 and hormone receptor positive. Lymph nodes were clear after lumpectomy and re-excision to ensure clear margins performed. Originally 3.7 cm and there is an argument to add the second lump size to the first so it was just under 4cm. Because of the varying medical opinions I opted for the prosigna test as I wanted to be sure re chemo and make an informed choice. Result unfortunately came back luminal B so likely reoccurrence. I’ve opted to do chemo which starts next week once I have port insertion this week. Again my choice because of the number of treatments. Chemo wise I’m having EC 4 cycles of 3 weeks followed by Taxel for 12 weeks. Then I will finish off with 16 Rad sessions. My surgeon and oncologist keep referring to me as fit and healthy so that’s why they want to blast the BC and make sure I stick around for a while. I’m 61 so being fit and healthy sometimes perhaps doesn’t pay ! ... now I’m looking into the studies of exercising immediately after ones chemo treatment, so literally going from the hospital to the gym.
I haven’t spoken to my Oncologist about regime yet. It would be interesting if your Oncologist comments on it - if you are so inclined that is re gym work ....good luck and let’s know how you go please
🤞😀 - @Scoops did you make a decision re: chemo?
Ive also got ILC, if you don’t mind sharing what was your staging/lymph involvement/tumour sizzle, your age and your hormone receptors?
I meet with med onc tomorrow.. would be good to have another recently diagnosed ILC to compare to.
Sorry for all the q’s and thank you :) - I think it's important to realise that, while you can and should be active in determining your treatment, the idea of control is different from what it's been in the past. It's more of a constant response to whatever is happening. Good luck with things @Scoops. Where are you being treated?
- Thanks @Nicksta - you are so right xx
- @scoops .... I am sorry to read your news. However look at you taking charge .
You are absolutely right 1 day at a time. This horrible disease throws many curve balls and everybody's scenario is different. The hardest thing is that most of the time we don't look sick, so when all this is going on you may get some comments from friends and family like : oh well at least they got it early, well at least you got the good cancer as its so treatable , or so many other things. That is where it is great to chat on here as I find when the curve balls are thrown at you you can come on here and just read or scroll through and feel like you are not alone. I also find it hard when I share information and the you get people texting asking how were your results, they don't understand that sometimes there are no clear results it just keeps going on for a while.
The waiting is the worst part and I am now 10 months into this and still learning how fast things can change. I have a pet scan tomorrow as my lymph nodes around my lungs are enlarged , I have had two CT scans in the last 6 months and there has been no change which is good in one way but they are still suspicious.
Unless you have it it no one can understand how fast things can turn around .
There are so many people that can offer good advice in times of need so good on you for sharing your information as I know they will help you get through this.
Stay strong it will help you fight this , the waiting is hard but for this test I think the waiting is totally worth it as it is all about leaving no box un ticked. Sending positive thoughts your way xx
