Hi Sandra, o too have recently been diagnosed with breast cancer, not started chemo yet, see oncologist on the 10th, I'm positive thinking all the way, sending love and hugs, hope all goes well for you xx

Hi Jeanie

im so sorry I didn't respond to your post sooner... been a little while since I checked in on here. 
 

I hope you are as well as can be expected. Your post was such a positive one .. the treatment can be a bit of a roller coaster but a positive outlook can go a long way in rolling your sleeves up and getting the job of treatment done and dusted. 

I was diagnosed 6 yrs ago on 10th of August ( the date of diagnosis kinda sticks with you )... so I'm now back onto routine recall for mammograms ( my cancer was caught from a routine screening appointment).

Again .. I'm so so sorry I didn't check in sooner ... I hope you will let me know where you are now in your treatment. Sending hugs x
 

Hello peeps! Been a long while since I've been on here but I hope you are all doing okay.

Jeanie welcome to cancer chat. This forum was my saviour on my first diagnosis and support so please do keep us posted. It is quite the journey and having done it twice I am still here so the positivity is great. You will have moments where you will not be able to be so positive but that's okay. Process those feelings as and when they come and I for one found talking about it with fellow cancer warriors really helped. Everyone deals with it all very differently and everyone reacts differently to every stage of this journey so there is no judgement whatsoever on this chat. I hope you don't suffer with too many side effects and they cure that *** cancer! The best thing is you've been put on the radar and are getting treated.

So what I've discovered is there isn't a support group for cancer in my area so am surging forward with this. I've learned even more being on the different groups at Kings College and will hopefully be on a recruitment panel to help recruit staff who have the right ethos as a patient representative. I am also on the Cancer Patient Voices Group.  This is my keeping my brain active, giving back and using all my years of experience in my various roles. I have officially hung up my working life as I want to enjoy my life and do what I want - not what I have to. My gorgeous pup Toby keeps me smiling even thru my hard days - yes still physically have limitations but onwards and upwards!!!  Life gives many curveballs but you have no choice but to catch them but a choice to gain that strength to chuck that curveball back! I am extremely fortunate I am at this stage in life to be able to do all I do so thank you to the universe, God and whomever else has come in my life!

Morning me dear :happy:

oh my... the yrs never mind the days are rushing by. I love the ethos of you post about life... it's a short life even without the spectre of cancer raising its ugly head..your outlook sums it up perfectly ️

Go you girl putting the world to rights for us all couldn't imagine anyone better suited to your new roles. 

There's wonderful you pulling on your superpower cloak helping everyone and meanwhile there's me who is kicking back, joining craft groups and chuffed t bits I've finally got my state pension nd bus pass :laugh: 

Eee lass.. thank you for being there for me every step of the way.. together the 3 musketeers...all for one and one for all ️

Good morning peeps.

been a while since I posted nd yet... here I am wanting something lol.

So... had my Dexa scan and 2 yrs since last one and seems my bones have found a level of staying about the same as last scan.. still Osteopenia. 
 

I think I've calmed down no end since the discharge telephone conversation where they surprised me with changing me from 10 yrs Lesterol to it's been 5yrs so stop. We agreed them that I'd wait for results of Dexa Scan to see if my bones had deteriorated and all things being equal I'd stay on for a couple more yrs making it 7 yrs of meds. Well Dexa is same as last time but... being a woman.. I've decided to come off the meds as they first suggested.

So.. what do I want.... well as always advice please. Do I just cold Turkey and stop.. or is it best to wean myself off if so how. 
 

Cheers me dears x

Sandra I think you need to see an onco-gynae specialist. Perhaps read some studies about the drug and the type of cancer you had and when you were diagnosed. 
I am on tamoxifen and it has caused all sorts of issues for me this second time - my teeth are just crumbling and I'm taking supplements and all levels perfect. These drugs have a lot to answer for! But for me my markers were 8/8 for estrogen and 8/8 for progesterone and I hadn't gone thru menopause so my only choice was tamoxifen. 
So the long and short is get some professional advice, look on Breast Cancer Now forum - keep asking and pushing until you're satisfied with the information.

My first cancer was a different cancer and I was able to stop tamoxifen after 2.5 years with a 13% risk so I took it. I've been reassured by my onco-gynae and oncologist that I didn't get a second cancer due to stopping taking tamoxifen but the mind wanders....

Everyones dna and cancer is different and how drugs affect each person is different. Your medical team and reading studies to ask the right questions will perhaps give you an answer? It's a very tough choice and only you know your body. Good luck and hope you learn more to make your decision.xxxx

Hi there, I've just found your thread as I too have recently been told I have the Pik3ca mutation so did a quick search on the cancer chat and found your post.
A quick recap on my journey which started with bc in situ in 2006. Small, stage 1 and was less than 1cm and hadnt reached lymph nodes so didnt have to have chemo. But did have 22 lymph glands removed, a lumpectomy and 30 sessions of radiation therapy. Followed by 2 yrs of tamoxifen and 3 years of letrozole. All ok until 2020 (wasnt I lucky!) when unfortunately it recurred. This time it had also travelled to a rib, very small but now classed as metastatic. So then had 6 months chemo, a mastectomy, then began Ribociclib but had to change after approx 18 months as it had progressed again to a vertabrae. Changed to Abemaciclib in January this year. Since the mastectomy in 2021 the cancer marker CEA has been steadily rising but the last few months is now rising in leaps and bounds! And I have just been advised that I have the mutation and so will be starting Alpelisib (Piqray) next month along with Fulvestrant. 
I was wondering, as you have the same mutation, if you have been taking the same meds and if so, how are you getting on with them? 
I'm very happy to hear you are doing so well and enjoying life to the full! :)

Hi... to be fair the consultant and I  had a long discussion on it on the last call together .. discussing based around early detection, size, type etc. She did say there was a small benefit to be had for taking for 7 yrs but even that dropped off after that. She was definitely advocating to stop straight away but agreed to support me if I wanted to continue for a further 2 yrs making it 7 yrs in total. All this was on the premise my dexa scan was on par to last one .... which it was. The only thing I didn't ask ask was if I did stop...did I wean off of just stop lol. 
 

I too am having problems with my teeth.. I'm having to eat softer foods because mine too are crumbling. To be fair when I was first prescribed the consultant said.... keep a close watch on your teeth...he was right. X

Hi... to be fair the consultant and I  had a long discussion on it on the last call together .. discussing based around early detection, size, type etc. She did say there was a small benefit to be had for taking for 7 yrs but even that dropped off after that. She was definitely advocating to stop straight away but agreed to support me if I wanted to continue for a further 2 yrs making it 7 yrs in total. All this was on the premise my dexa scan was on par to last one .... which it was. The only thing I didn't ask ask was if I did stop...did I wean off of just stop lol. 
 

I too am having problems with my teeth.. I'm having to eat softer foods because mine too are crumbling. To be fair when I was first prescribed the consultant said.... keep a close watch on your teeth...he was right. X

Morning peeps.. but of trouble logging on to updated site then did a long post but can’t see it. So trying this short post t see if works lol

Yay success.. short version of my long post that didn’t publish… I’m doing fine.. how’s everyone. Lol

Hi Sandra,

Sorry to hear you had an issue logging in to the site. We we will look into this. If you experience any issues using the forum or have any questions at all, you are more than welcome to email us anytime.

Best wishes,

Ben
Cancer Chat Moderator

Hi all hope everyone is doing ok?

Sandra glad all is well. This new cancer chat is taking a bit of getting used to for us technically challenged!

Had hysteroscopy - haven’t heard - been almost 4 weeks so taking that as all good!

Where I had my first cancer on my right side I started to experience a lot of pain from armpit into top of breast - sharper when I breathed in. Has anyone experienced this?

Had it checked and it’s a lot of scar tissue which is pulling on my nerves. Why now??? This op was back in 2017! Apparently I’m using my arm too vigorously so very gentle exercises more often. I mean - how can I function if I constantly have to think I can’t lift bags or scrub or stir a lot when cooking? Honestly - something new all the time!

Race for Life done for this year - man was it hot hot hot!!!! Made it very difficult but raised good amount so worth it.

Hope everyone is enjoying the weather and are keeping well.

Well done on your race for life and raising lots of money.

Glad your ok Sandra and your messages are showing!

So nice to have the warmth back! 

Now under a year till our wedding so excited!

Hugs to you all x 

Oh my..take it easy My friend was knocked for six when she had her hysterectomy.  Everything crossed for good news.

I get the odd pain and discomfort where I had my op ( always have)…it’s usually if I’ve slept on my stomach the wrong way or when I do things like when I cut back my hedging using shears. It does settle down after a couple of days though… till the next time.  

wow… congrats on doing the race for life … in the heat… I would have had to keep laying down before I passed out (I struggle with heat these days…I blame the Letrozole. 

X

Hi beachbabe glad life’s ticking along nicely for you and  with the wedding to look forward to as well. 

I can’t see my threads that I created on my profile like I used to …so had to search for this one and bookmark it. 

I seem to not tolerate the heat the way I used to so doing best to keep cool … I’m blaming the Letrozole lol.

keep well pass and keep in touch x

Always lovely to hear from everyone. A bit cooler here on east coast today. Still nice to be out and about though

 X

Haven’t heard from Billy for a while….love to hear how you are doing Billy … drop us a line please x

Hi all… hope everyone is ticking along nicely … be lovely to see a quick catch up from folks.

The good:- things are ticking along nicely for me … yay. Surprised o get a letter inviting me for my routine mammogram in September… I had my last annual one last September and discharged back to routine recall.

The bad:- none … whoopie.