Just an idea! Not sure what others think!

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Dear everyone living with stage 4 BC,

                                                                     I have seen on an American site a thread where people who are stage 4 introduce themselves and describe their type of breast cancer and the treatments they are receiving.  It made for very interesting reading.  I just wondered if anyone out there would be prepared to contribute to such a thread.  The good thing about something like this is we can read about each others treatments and find out if we are being treated similarly.  Knowledge is power (possibly).  We can also get an idea about timescales the length of treatments and the numbers of us affected.  Of course if no-one wants to participate I will fully understand.

 

Anyway here goes for my little bit!  I was diagnosed stage 4 in May 2013 with a pathological fracture of my left femur for which I received a rod and pins.  I was also found to have 3 other little bone Mets on my right hip, coccyx and thoracic spine not sure which one.  I am ER positive with a score of of 8 out of 8.  No

-one has mentioned if I am progesterone positive.  I am also her2 positive.  I was treated in the summer of 2013 with taxotere, perjeta and herceptin.  I obtained the perjeta or pertusumab from the cancer drugs fund.  I think I am currently stable. I have been hopefully maintaining on herceptin, perjeta, tamoxifen and denosumab.  I haven’t had any surgery yet.  Although where I am treated have given me the option of a mastectomy if I would like.  My treatment so far has been great and I feel quite fortunate.  We did have a few hiccups at first but I think this is because of the enormity of it all.  All of this from a hospital which has had some quite bad publicity recently. I receive regular counselling from the hospital which has been great too.  I am being scanned roughly every 3 months both a ct and muga scan with an odd bone scan.  I also have a power port which is brilliant and no bother at the moment!

 

On a personal note I am married with two children 9 and 11.  I was 45 nearly 46 when diagnosed.  I am going to be 47 in a few weeks.  We have just acquired a little cairn terrier puppy who has been great therapy.  On the whole I feel much better than a year ago.  I do try not to be too happy as living with feels like a stack of cards which could collapse at anytime.  I have been off work for the past year and am applying to retire on the grounds of ill-health.  This wasn’t an easy decision as I have always worked.  I just don’t see how constant treatments and scans can be fitted in with work.  I know it is a cliche but I also want to spend time with my family.

 

Thinking back I discovered this website a year ago whilst in hospital and it gave me such strength to read everyone’s experiences. I must mention Dawn , Belinda,  Lemon grove and Val especially.  

 

Anyway looking forward to reading everyone’s experiences if people would like to post.

 

Take care everyone.

 

Sue XXXX

 

 

 

 

 

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Hi,sue,yes,I know what website you mean and I liked that idea. So here goes:
I was diagnosed with Bc primary and bone mets (lumber & thoracic spine,ribs & pelvis) at the same time,6month after a clear mammogram in June 2013 .i used to have mammograms every year because of family history. BCN said I had thickening sent me for mamo,came back clear,she said it was just hormonal!! I only went to my GP 6 month later as breast went red on one side. I felt like I was wasting his time over a bit of hormonal thickening. I’m now coming up to nearly a year living with MBC.
I’ve had no surgery(mastectomy) or chemo ,YET!
I’m HR+8/8, PR+5/8 ,HER-
I started off with tumour markers of 28 and was put on tamoxifen,this never worked and markers went up 100 every month.
In December onc.finally said it’s not working and put me on Letrozole & Zolodex injections to put me into early menopause.
I’m on Zometa IV every three weeks for bone met.
Markers kept rising apart from one month and now I’m waiting to see next month if he’ll change treatments. EE is next treatment.
I’ve had one CT scan & one bone scan nearly a year ago. So I’m hoping after a year of markers rising every month and failed treatments he’ll get round to ordering one.
And hopefully mets are still in original places and not been partying this last year.
I was 47 when diagnosed,I’m 48 now. I’m married to childhood sweetheart for 30 years this June and have one teenage son.also two cats,hence name!
I’m a TA but have been on the sick since last June and I’m looking to be retired through ill health,just waiting for final paper work to be sorted.
Like Sue this forum has helped so much and keeps me sane at times. The support,advice & cyber friendships from the wonderful ladies on here has been fantastic.
Huge hugs,Helen xxxxxx
Ps just found out today I carry the Braca 2 gene.

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Hi Sue,

 

What a great idea.  Sometimes it’s difficult to compare notes if you don’t know what others have been diagnosed with.

 

For me, diagnosed stage 4 in Jan. 14 after routine scan for new primary in remaining boob.  I didn’t get to see the pathology report for that, but believe it is ER+ and grade 1 (2009 Dx ER+ grade 2).

 

Pure luck that I found the new primary as it was tiny.  I was ‘re-arranging’ myself to get comfy in bed and felt something different (I think it was probably my rib!), but primary was picked by ultrasound and biopsy.

 

I wasn’t given the option of having the new primary removed after new stage 4 diagnosis.  I was diagnosed with two mets to my spine L1 and L5 and started on Aromasin.

 

CT on 15th April - results on 7th May - Aromasin not working and new mets to both lungs.  I will be starting on FEC 75 in a fortnight.  I was lucky enough not to have had chemotherapy or radiotherapy before so new to me.  I will be having Denosumab as well once mouth all healed up.

 

I’ve had two Dexa scans over the years - both fine.

 

I am 50 and am/was an FE teacher. I have two children ages 27 (girl) and coming up for 17 (boy).

 

I have received great comfort from these forums over the years with all the support and advice from the fab ladies on here.

 

Tink x

 

 

 

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Excellent idea Sue. It’s really useful to see everyone’s treatments and experiences to glean info. Would people also mind stating their profession? I ask because my onc remarked that huge increase in my area from people in education and yes I’m a teacher.

I was dx in July 2010 with two tumours in right breast and one lymph gland under arm. Port inserted in chest as veins terrible had 8 x chemo, lumpectomy and 6 weeks rad. My tumours were her2+ so started herceptin on cycle 5 of chemo and finished nov 2011.
In august 2013 sharp pain in chest bone for one day and then on and off pain thereafter. Saw gp in sept who said just muscular and nothing to worry about. Routine appt with onc October who sent me for bone scan. Tiny hotspot on sternum which matched pain but radiologist reporting on scan said highly unlikely. Sent for PET scan - dx stage 4 nov 2013 with bone and multiple lung mets. Port reinserted but this time to my arm( which I must say is not as convenient as chest port but can’t have chest port just in case I need rad later on). Have just completed 7 three weekly cycles of docetaxol with herceptin and perjeta. Also on monthly bone injections.
Today I went for my return to work interview in order to go back after half term. I am looking forward to it but will be careful. I’m now 46 (43 when initially dx) - two children 17 and 13 and been married for 20 years.
During my first lot of chemo in 2010 I went through the menopause. In 2012 I restarted my periods (my onc was pleased - I wasn’t!!!) and I’m currently going through the menopause for the second time. Hot flushes etc are just horrendous. Because of my age apparently my periods might return again - please no as I’ve had enough of all that. Anyone else flitting between pre and post menopausal symptoms?

Anyway I’ve found this site a great comfort and help. It’s made me take control of my treatments more and ask more informed questions. My onc isn’t the greatest one for giving out info so you can leave feeling you’ve not been told anything if you’re not careful. He’s never told me I’m stage 4 but alas I can’t hide from that one. He tends to be as positive as poss which is great but it doesn’t really tell you anything.

Take care ladies. You are all amazing and thank you for the support. Much appreciated. H xxx

PS - I’m reluctant to write my name as I do feel we should have a private site that wasn’t open to everyone. Especially working in education - don’t want the kids coming across me on here.

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Listen folks… I don’t want to put a damper on this well-intended suggestion.  But remember that ALL our posts on BCC forums are freely searchable on the Web, and be careful about posting personal information.

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I was diagonised May 2013. I felt a lump in my left breast and went straight to my GP.  Results came back after scans etc that I had breast cancer with mets to both lungs and in my 5th rib.  Totally devasted.  Had no surgery but 8 sessions of Taxotere and I have a monthly injection of Denosumab.  Alot of us in our 40s I notice.  I am 47 in a couple of weeks.   My sister lives in Canada and she has had mamogrammes since she was 40, here it is still 50, I should have followed her to Canada.  I have been married nearly 26 years and have 4 children, 3 boys aged 25, 23 and 19 and a daughter aged 13.  After my treatment finished end of October they took out my ovaries to immediatealy bring on the change.  I have been taking Tamoxifen also with no SE.  I work at a College as an Assessor.  I continued to work through my treatment. If I hadn’t kept working I think I would have gone mad.   I am seeing a herbalist and take 25 different herbs aday and also 35 different supplements.  I am attending the Back2Health conference in Exeter in June which is a 3 day conference about new research and alternative treatment.  When I first found this website it really upset up, I think it made it real and sometimes reading other people’s symtoms made me think I was going to get them all as well which may not be the case.  Every day I ask myself how I am feeling - if I didn’t know I had cancer I wouldn’t know I had cancer and I have to keep reminding myself that.  It messes with my head more than my body at the moment.  More recently I have enjoyed reading the forum as I have not come to terms with myself.  The old saying ‘Times a healer’ does not apply as time doesn’t heal we just get use to our new reality.  Sorry to ramble on.  I wish my sister was living locally - I really miss her.  My 13 daughter went off the rails abit last summer - I was focused on my treatment and took my eye off the ball - now things are good and we are enjoying time together.  Dealing with a hormoral daughter when my hormores are all over the place has been difficult but things are good.  I go to a monthly support group in Preston which is for people with any cancer and any stage and I have met some great people and get some good support.  I am ER postive and HER -.  Not sure what all the numbers mean that people have said.  I have my next scan on 20.5.14 and then results 3.6.14.  Holiday to Ibiza and my birthday inbetween.  Nice to hear everyone’s stories.  Don’t feel so alone anymore XX

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Hi ladies, thanks for the kind words Sue, my story so far, mindful about the public forum I will only say my family have always been my priority and the reason, no doubt like so many of you for putting up with tough times, tough treatments.
I was diagnosed, stage 4 from the beginning, in 2003. I was early 40’s.
I had very little spread, to bone, but my right hip spontaneously fractured. Hip replacement and diagnosis.
My hip replacement is still good by the way!
ER+ Her2- PR+
Have never had a mastectomy and primary is now very small, no problems from it.
Treatment wise, from the start to now, Tamoxifen, approx 18 months, Arimidex, approx 3 and half years, Capecitabine, 4 and a half years, Doxorubicin, then back, as years had passed, to Arimidex, it’s been working a second time since Autumn 2013.
Have had radiotherapy to hip, to sacrum twice as years in between sessions, to sternum. In 2008 I was found to have BC in one ovary (I don’t have lobular BC which I understand is usually likely to spread to ovaries.)
Since various treatments CTs have shown ovary of normal appearance.
I’ve been on Bisphoshonates since 2003, have had the majority of the last eleven years on Ibandronate.
I was diagnosed with damage to my heart just a few weeks ago. This was due to my last chemo, Doxorubicin.
I am being treated and monitored and the plan is to continue on this path and get stronger to crack on and have other
chemotherapies when I need too.
A group of us who used these forums in 2004 formed a group and used to meet up all over the UK. There were over forty of us and now just 3 of us are still alive. Wonderful women, I miss them, learnt so much from them. Also edited to say I have Tumour Markers taken regularly and for me they are a very reliable indication of what is happening treatment and symptom wise. Just one more thing to add, before Doxorubicin I had some nerve pain and OxyContin and Amitriptyline along with some effective rads were very helpful but I don’t have to take either of them at the moment. So wanted to say good pain relief can make such a difference to your quality of life and it doesn’t mean starting strong pain relief will mean you are then on them for the long term.

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I just wanted to add my story, especially since reading about Sue and the comments regarding lobular cancer.

I went for routine mammagram in Sep 2012 and received a letter asking me to go back because they had ‘insufficient details’

returned and they showed me tiny white marks -about 5 - in a line about the size of pinheads. There was no lumps, bumps, thickening, puckering or pain but they did biopsies and also tested my lymph nodes.

Following week told me I had cancer in my R breast and nodes so arranged a RMx and clearance.  They mentioned reconstruction and eventually decided on diep (using tissue from my stomach)  I also had an MRI scan on my breasts and they told me that my left breast was clear.

I had my op and they put a temporary implant in the R side, and at the same time they did a reduction on my left breast…would save having that op later, they said, because they could see that the diep would make my reconstruction side smaller.

Had op and when I went for results they told me that I was ER8/8  HER2- and that they had discovered cancer in my left breast…despite the MRI showing it as being clear…and also in the skin below my R Breast.

They then arranged a CT scan and I was told after this that I had spread to my spine and pelvis, and also shadows in my peritoneal area. 

I was put on letrozole, zometa and Adcal.  My cancer is lobular, very difficult to find they said.

I asked why the cancer in my Lbreast had not shown on MRI  and was told that  - ‘the tumours are very small, all less than 2mm and spread throughout the breast like grains of sand, too numerous to count’. (Surgeon’s words)

 

I have since read somewhere that tumours of less than 2mm cannot be detected by MRI ???

At that point I said that I wanted to just have a bilateral mastectomy, remove the implant and no reconstructon.  Surgeon was very reluctant, he actually said the he didn’t want to cut into left breast because it was ‘riddled’ (his word) with cancer and he may cut across a cancer cell.

I said surely that could have happened when they did the reduction, he agreed but said that they were unaware then.

Anyway long story short, because I am ‘going on’ a bit.  Started letrozole Nov 12 and straight away had a huge drop in tumour markers (412 to 105)  so then with support of BCNurse and (surprisingly) oncologist the surgeon was persuaded to do the bilateral.  That was in April 2013.  No reconstruction and no regrets.  Continuing with letrozole and I ache such a lot at times, but painkillers help.  My tumour markers have continued to fall and my 2 scans in the meantime (last one in Nov 13) are showing no spread.

Sometimes feel ‘lucky’, sometimes feel really ‘down’…as most of us do I suspect.

There is loads of cancer in my family, my mother died very young (27)  her 2 sisters both died of cancer in their sixties, also my granny and my great granny, and most of my granny’s brothers  -  but not all breast cancer  - only one we’re sure was BC is great grandma.  Mum had cervical cancer but don’t know if ovaries were involved.

I always thought it wouldn’t affect me because I take after my dad’s side of the family!!  I worry so much for my daughter who is 41, but try not to let her see that. 

 

Goodness I have gone on haven’t I, but somehow feel better for it.

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Bumping up for Bev 1004 Hope this helps Bev xxxx

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Bumping up for anyone new who would also like to share their experiences dx.