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
 

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 Mlr86. So sorry to hear you've been through so much! The studies I read said that chemo nor rad works on this cancer that has PIK3CA - I can't remember the name of the drug they said will work. 
I guess it's all a lottery as to timings - so far am ok but time will tell as I've been told it will come back.

My medical team are scanning if anything pops up that I need reassurance on so hopefully it will get caught early enough. We are in the elite club of 6% of women who get breast cancer - not something I'm happy about but hey ho it is what it is. I am only on tamoxifen for 5 years initially as I hadn't gone through menopause and a painkiller for chronic pain called amitriptyline as I've had pain in my ribs since 2020.

Everyones cancer is different even with this mutation. I have just left it in Gods hands to be honest. But I'll be d*mend if I let it control me!

You are so admirable - you honestly are. Keep going - you've got this!

Ah thank you so much for the reply. I'm happy to hear you do not need to be on any other treatments apart from the tamoxifen for now and hope that you continue to be healthy and happy and living life to the full. Thats what we all aim for afterall!

The medication that I'll be starting soon is relatively new and was only approved in 2020 and is specifically aimed for women who have bc with this mutation. The advancements in available treatments and targeted therapies has been incredible over the last 5-7 years and we are so lucky to have them available. 
Wishing you all the best along the way on your journey, we have got this! xx

Hi Mlr86 can I just ask why they removed 22 lymph nodes if they weren't cancerous?

Also what were your symptoms when it came back in your rib?

I looked at the study I'd read and it's the drug you mentioned that they treat PIK3CA mutated cancer. I am very bad at remembering anything!

I do hope this drug helps and agreed - advancements and research has come leaps and bounds! So all that fundraising is helping this research.

It's exactly a year ago I did the big pink jump (jumped out of plane) raising money for breast cancer now. I'd do it again!

Hi Sandra, 

It's great to hear that you can stop after 5 years. I took Tamoxifen fot ther first year, then changed to Letrozole when I found the second cancer the following year. I was on this for 6 and a half years. When I stopped, I just stopped cold turkey and I didn't have any additional problems with this. Did you ask your breast care nurse what you should do? She would possibly be the best person to advise.

Kind regards,

Jolamine xx

Hi, well I lived in Spain and back then in 2006 the sentinel node procedure wasn't common place practice unfortunately. They removed the glands along with margins once the tumour had been biopsied and confirmed cancerous.

About 4 to 5 months before I was re-diagnosed in 2020 (unfortunately the year of Covid!) I started with a severe pain first in the front of the ribs on the right hand side, which actually travelled to the side and then to the back over the next few weeks. I thought I had pulled a muscle possibly lifting heavy shopping and my GP gave me anti-immflamatories which did eventually ease the pain after 6-8 weeks. When I was rediagnosed in the September and sent for a PET scan this is when it came to light that I also had a spot on rib 3 (at the back). It all made sense then of course.

Thanks for your good wishes! And well done, you are doing great things to raise money towards cancer research, unfortunately I'm not as brave but do donate on a yearly basis. Its so important for the continuing research. Take care and have a great weekend xx
 

Oh my word I have had the exact same symptoms in my ribs in 2020 which is why I went to see the consultant and after mammo they diagnosed with a second breast cancer. I've had PET scan, CT, bone scan and MRI and they found nothing - I still don't feel right but I put that down to side effects. Let's see....still get bad rib pain both sides.

Im very glad you're being treated with the right drug now.xx

Thank you! Well they seem to have done extensive tests with you so if nothing showed up in the ribs then I think you can breathe a sigh of relief and put it down to something else, as you say maybe its side effects of the treatment, which can be very difficult to deal with in its own right. But if it continues then maybe you could request another scan beings as though you are a few years down the line so to speak. I truly believe we know our own bodies and should insist if we are concerned, for our own peace of mind xx

Thank you! Well they seem to have done extensive tests with you so if nothing showed up in the ribs then I think you can breathe a sigh of relief and put it down to something else, as you say maybe its side effects of the treatment, which can be very difficult to deal with in its own right. But if it continues then maybe you could request another scan beings as though you are a few years down the line so to speak. I truly believe we know our own bodies and should insist if we are concerned, for our own peace of mind xx

Evening everyone,

Just thought I would pop on and catch up with you all. Everything ok here. I have my 3 year breast screening on 30th may. Still feel nervous about it. 

Big hugs to you all x 

Beach 

good luck I'm sure all will be good 

I have my first one coming up after finishing everything 

I'm dreading it think mine is august 

big hugs love Lara ️

Hello all - what a glorious sunny day today! 
Sigh...the dreaded annual mammo and that waiting for results - every scan and test brings its anxieties.

I now have to have an investigative procedure done so have to be put under (general anaesthetic) and biopsies taken. The deal with me is since I've taken tamoxifen I keep bleeding. It all stopped last year but have had scans,etc and was told lining is very thick. Had another bleed last week so now have an urgent op (I call it procedure) in order for them to take some biopsies. I think they're being cautious as they know my cancer will be back. Very lucky to have the care I do.

Your girl is famous:

www.facebook.com/.../
 

Am also working with Macmillan to set up local support group - a work in progress.

Hope everyone is enjoying this sunshine and keep smiling coz we've got this!

Hi Beachbabe,

I hope that your three year screening goes well at the end of this month. It's only natural to feel nervous, but here's hoping that all will be fine.

Kind regards,

Jolamine xx

Hi Jbains,

I'm sorry to hear about your latest problems, but glad to hear that they are looking into it. Here's hoping that the biopsy doesn't show up anything untoward.

Let us know how you get on, famous girl and keep up the good work.

Kind regards,

Jolamine xx

Thank you. Had it done and first ever it was a bit painful in the breast I had lump removed even though that was now 5 years ago. The other 2 mammograms I have had didn't feel a thing. Mind gone into over drive that some might have changed. 

Now going for a walk along our beach and clear my head.

J Bains hope your ok.

Big hugs to everyone x  

Ah that dreaded wait after every scan, mammo and biopsy...

I found after 5 years my scar tissue had increased and my mammo started to be extremely painful on my right breast (first diagnosis) so hopefully Beachbabe it's nothing untoward. I know if I get a call from the hospital within the week of any test/scan then they found something. No news is good news!

I sure do hope this weather gets a teenie bit warmer - it's almost June! Not that I like it very hot...no pleasing eh?!

I am in the process of setting up local cancer support group - with the help of Macmillan. The cancer strategy that my hospital has been working on and is patients have had a lot of input into is being launched next week so am very happy as it will help others. Doing Race for Life end of June - obviously not running - never even ran for the train

I do hope everyone is well and enjoying the sunshine when it's here.

Good luck with race for life! I have done quite a few and enjoyed them all. As well as London moonwalk. Nice to give something back. Good luck with the cancer group.

Definitely need some warmer weather. I get keys to my beach hut Thursday so hopefully will be better after that x

Hi Beachbabe,

I'm sorry to hear that you found this mammo more painful than the last. Did they say when you would get your results?

I'm keeping my fingers crossed for good news.

Kind regards,

Jolamine xx

Hi Jbains,

You never stop, do you? - I hope that your local cancer support group is a success and best of luck in The Race for Life.

Kind regards,

Jolamine xx