New to the group

[Tealkia]

Hi, KIATEAL here. Just learned of local recurrence. Pet and bone scan to follow. Not sure whether I’m in the right forum. Followed a link while checking out Letrozole. No chemo/radiation etc so far. Surgery and Care Oncology Protocol only. Now 1 1/2 year later local recurrence after mastectomy. Waiting…, and hoping 🫤

[luckysmom13]

Hello!First of all, I'm sorry to hear you're dealing with this beast. Breast cancer sucks no matter what stage you are!

I understand the anxiety and fear of waiting for scan results. I hope and pray that your scans are normal!!

This group is full of wonderful and supportive people who are dealing with Stage 4 metastatic breast cancer, and I sincerely hope that you don't fall into that category!! There are many breast cancer groups on here that may be a better fit for you once you know what is happening currently with your body.

XOXO, Amy

[Hidden]

Hi KIATEAL,

Welcome to the community but - as wonderful as I'm sure you are - I'm hoping you decide/learn that this is *not* the place you need to be!

Hopefully your local recurrence is just that - local. But by dipping your toe into this group, maybe you'll see that a metastatic diagnosis is not necessarily as bad as one might fear. We have so many great treatments and many of us are living for years while feeling quite well.

Best of luck with your upcoming scans and treatment.

Lynn

[Tealkia in reply to Hidden]

Thanks ladies, I’ll keep looking for a more suitable group but you are right browsing this group has been very encouraging should things not go as I’m hoping 🙋

[jersey-jazz]

Dear KIATAL- You are most certainly welcome to visit us on the forum as much as you like but my hope for you is that you haven't graduated to the metastasis level.

[mariootsi]

Hope you are not metastatic!

[Tealkia in reply to mariootsi]

Thanks for your welcome and good wishes. I’m keeping my fingers crossed. Reading the various posts has given me a new perspective and the encouragement to stay optimistic whatever may come. 🙋

[mariootsi in reply to Tealkia]

I'm glad.

[8576]

Welcome to the group. You have found a place of great support and information.

Cheers, June S.

[8576]

Forgot to ask you, where in Canada do you live? I am in Ontario.

Cheers, June S,

[Tealkia in reply to 8576]

I’m in Toronto, Etobicoke Lakeshore 🙋‍♀️

[8576 in reply to Tealkia]

Well we are close. I am in Burlington also on the Lakeshore. Hearthstone by the Lake.

[Tealkia in reply to 8576]

Oh WOW, and we meet on a UK group. There’s a Hearthstone by the Lake not far from us. We had a look, nice place. Btw got my various scan appointments today. Should know my fate by July 14 🙋

[Beattheodds]

🤞. Good luck with your diagnosis.

[PJBinMI]

I hope the local reoccurrence is just that and no more! But I want to add my voice to those letting you know that many of us with metastatic bc do well for long periods of time. I'm at 18 years since the MBC diagnosis and if you saw me out and about, you would never guess that I have advanced cancer. My maternal grandparents were from Toronto! They moved to Portland Oregon and then Southern California for my grandfather's work, in the early 1900s.

[Tealkia in reply to PJBinMI]

I’m very happy for you, your case is an inspiration and encouragement for me. 🙋‍♀️

[Tealkia in reply to PJBinMI]

Hi Everyone, thanks again for all your supportive replies to my posts. Well, the scan results are in and after my visit with the oncologists to review them I’m in complete shock. The cancer has spread to multiple sites in my bones, my lungs and possibly my liver. I’ve been subscribed Letrozole and Ibrance and some kind of ‘acid’. And all I expected to hear was the date of my surgery to take out the new Tumor. Now there won’t even be a surgery. So now I have to gather myself again and deal with all the medication, the side effects, upcoming appointments, the bloodwork/analyses, scans every so many months etc etc. it sounds very overwhelming and I’m not even sure I’ve fully grasped how much my life will change from now on. It is ironic that I first got the impression I might have joined the wrong forum - now here I am, in the right place without knowing it.

Thanks for listening 😟🙋

[Garden-Lady]

Dear KIATEAL, I am so sorry to hear about the spread of the cancer. I am sending you lots of love and strength to face the next part of your journey.With love, from England. Xxx

[Tealkia in reply to Garden-Lady]

Thanks Garden-Lady. I’m furiously researching meds and supplements to see what is coming my way. Reading everyone’s story is helpful. At this juncture I especially appreciate hearing about coping strategies for side effects that might be coming my way. 🙋‍♀️🙏

[Garden-Lady]

Dear KIATEAL,There is nothing to fear from Ibrance and Letrozole. They do have side effects, but I think most people experience these as not too challenging, certainly liveable.

There are lots of posts on this site about living with these two medications. My advice is to start with them and then look up the posts as needed--you might not feel any of them.

Personally, the combination worked for me quite quickly and reduced the metastases rapidly.

The single resource that helped me the most was reading Radical Remission by Kelly Turner PhD. I have followed all of her advice in ways appropriate to my life, and this gave me a clear route to follow.

Regarding the complexity of blood tests, new medicines to collect, and timetables, I found using paper and pen to create a schedule helped me to plan with my diary.

I don't know where you are located, but here in the UK the Ibrance is only released after the blood tests each cycle, and has to be collected from hospital. The Letrozole otoh is prescribed by the family doctor, and collected from my usual pharmacy.

Sometimes the oncology nurses forget to book the blood test, and need a phone call to remind them.

There is no doubt all of this can be a super hassle. However, I am still alive and kicking, so practicing 'an attitude of gratitude' helps me keep it all in perspective.

The other people on this forum are always ready to help and support you too, so please let us know how we can help.

Take care, xxx

[Tealkia]

You are very kind to take the time to write back in detail. I’m beginning to be optimistic about managing the meds or, as many on this forum have found, there will be other meds to transition to. Reading the stories of so many in this community, I am realizing that every case is different and everyone’s response to medications and stresses are different. Now I’m researching the scary prospect of jaw fractures when on Letrozole/Zometa. Isn’t it all great fun - NOT. Be well, greetings from Toronto, Canada G🙋

[Aprilfoolz1]

I'm sorry you have joined us, but here we are ! I want to give you some positive encouragement on Ibrance and letrozole. I started Ibrance and fulvestrant 11/2019 (I had taken letrozole 2008-2015 when I was stage 1 so was put on fulvestrant). I have tolerated Ibrance / fulvestrant well and so far it has worked really well for me . I did have my Ibrance dose lowered twice due to low white blood counts at the end of the cycle which is common . I'm pretty active and work full time. I love what Garden-Lady said and agree i have adopted an "attitude of gratitude ". You will find lots of support here. One thing I've learned is that there are a lot of medications and treatments for MBC so if the first one isn't a good fit the next one might be THE perfect one for you . Please know you are not alone. My friends and family are wonderful but no one truly understands our highs and lows like those that share in this reality .

[Tealkia in reply to Aprilfoolz1]

True, the understanding comes from direct experience. But so far my friends and particularly my husband have been marvellous. I’ve been researching Zometa vs Xgeva and some other drugs. I can’t believe how complicated and multifaceted all this is. It will be so difficult to competently participate in discussions/decision with my Oncologist but I will try…. I can’t just hand over my life to someone I met just a week ago 🤯🤯 I’m sooooo grateful to have found this community and the wealth of information you all so generously share. The trick is to remember that no two cases are exactly the same … I just took my first Letrozole, Ibrance will follow in a couple of weeks - my new life has begun. Fingers crossed. 🙋