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Yes interesting @primek re the phytoestrogens ... I think the only major warning that should apply is to limit one’s intake of Dr Google ... you go looking and you are bound to find both for and against of any topic you are searching and with such convincing articles too !!1
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Hi all,
just wanted to let you know the outcome of the Oncology meetings.
No chemo which I’m relieved about as Im not sure I could have made the decision to proceed with that treatment.
So 16 Rad sessions and not to the armpit then Anastrozole for 5 years and tamoxifen for another 5 ...I asked about the protective film as mentioned on this forum and my Radio Oncologist explained the pluses and minuses very clearly so again I feel very comfortable with the team I have entering into this next phase.
With the lack of control I have felt since starting this journey - now that I have a plan and can see the rad sessions booked in ... my control over this experience feels a little more balanced shall we say ....
my concerns now turn to the medication and the many side effects mentioned . I understand no guarantee that all will have the same side effects but I’d prefer to be fore warned....
thnaks all once again for your well wishes and sharing info xx5 -
So Glad you have your plan sorted @Scoops..... and hope you have minimal side effects. I was really lucky & didn't really have many side effects at all other than the usual - warm breast, itchy, some redness & a small bit of peeling. Lathering the lotions on is the way to go.
Same with the medications - some are lucky enough not to get any/much side effects - fingers crossed you are one of them xx
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It's amazing how a plan can get you out of that godawful daze.1
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Glad to read your post from today @scoops , it really sucks to have to go through any of this but you are ticking boxes and moving along now.
It's all the waiting and going backwards and forwards , so a plan is good for now.
Our mind is a powerful thing so keep your mind clear, one day at a time. I am certainly not an expert but i started this journey last year in May. i haven't been on this page for a while as I have been in a good place . But the last few weeks I have had to have scans and things so back on that roller coaster. It helps to be on this page as we are all connected through this.
You could prepare your skin for the rads now ( I used moogoo soap and the udder cream even before radiation so i felt like I was doing the best I could, ( not sure if it helped but it was something positive I felt I could do to help my body, which helped my mind. I finished radiation end August and have been on Tamoxifen. All I can suggest is listen to your body write things down ( just in case you need to look back on some things,and try not to read too much into other peoples side affects for now, keep that mind positive.
My surgeon was not really big on getting base lines or blood levels but my oncologist is and I am so glad they did bloods in the beginning as a few things have come up and at least we have something to base things on and they are ale to get some answers faster than if we didn't have the base lines.
I wish you the best for your radiation, you can do this.
Thanks for sharing your story ( its another step , you are taking control of what you can and you are able to share it with us , its a massive step )
Wishing you all the best xx4 -
Thanks for sharing @Nicksta and here’s hoping and sending positive energy to you and that your scans are all clear. I’ve started the lathering on of moogoo cream and I agree with you - having that empowerment to know that you are giving your body the best that you can give it in all ways at such an out of control time hopefully will be so beneficial...0
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@scoops absolutely. Its also good to get a good skin routine going now as any light massage in the area is good for recovery. I see a physio and she is always telling me to carry on with moisturising and light massage to make the blood flow and help with recovery of the cells . Moogoo all the way xx2
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And just when I had a plan and thought I was back in control !
Arggggh and a few other words....
A larger extended team who meet weekly reviewed my case yesterday and my Oncologist has rung me this morning to pass on the news that the consensus was to undergo chemo. Yes, it’s still my decision but I feel gutted .... just when I had a plan of radiotherapy and we were taking steps forward. I’ve decided to go with the pathology micro analysis test which will then measure the virulence. Only problem is it takes up to 10 days and it’s $2900 payable upfront . At least then I’ll the absolute makeup of this BC pest and I need a sledge hammer or fly swatter ....
so bottom line is never ever think you have a plan and it’s 1 day at a time and there are likely t9 be curves along the way...😢
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@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 xx4 -
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?1
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@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
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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
🤞😀1
