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Just an idea! Not sure what others think!

53 REPLIES 53
Chocolates
Member

Re: Just an idea! Not sure what others think!

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

Re: Just an idea! Not sure what others think!

Thanks...thats great xxx

2catlady
Member

Re: Just an idea! Not sure what others think!

Bumping up for Bev 1004 Hope this helps Bev xxxx
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Hi ladies, 

                   I just wanted to congratulate Pam on her 27 months on xeloda. Well done and long may it continue.  

 

Also thank you Helen for sharing about your illhealth retirement it is a relief to hear others are still waiting.

 

Wishing you all the best!

 

Sue UCSC

2catlady
Member

Re: Just an idea! Not sure what others think!

Hi,sue,I agree with all of what Pam says. I'm going down the ill health retirement too It's taken over 5 months and we are nearly there. Mine has to now go in front of governors so they can dismiss me (legal reasons),then to pension people.
I've been on the sick for a year nearly. They do take any sickness into account in your 6months full,6months half pay you have had in previous year.
I really miss my job as I loved doing it. But for me this is the best decision. My head has been very supportive and chased OH & HR for me and tried to protect me as much as possible.
I wish you all the best in what ever you decide.
Huge hugs,Helen xxxxxx
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear all, 

                Thank you for your advice.  It wasn't an easy decision trying to take this route.  I have always worked at something.  However I just don't see how I can fit work in with all the treatments and scans.  I would like to say my job was or is enjoyable.  The reality was it was extremely stressful and was a struggle when I was well.  I also had a fractured femur which although better remains stiff and painful at timesSitting for long periods would only agggravte that.  I also wouldn't want to let my colleagues down by trying to work and being off for long periods.  

 

 I will bear everyone's advice in mind.

 

Thanks again 

 

Sue XXXX

pam01
Member

Re: Just an idea! Not sure what others think!

I took ill health retirement from the NHS 2 years ago....and took it all as a lump sum.........I would strongly recommend you discuss this first with your trusts pensions advisor and have a look at the figures which NHS pensions will supply....you may also want independant financial advice. Also remember you are entitled to 6 months full pay and six months half pay whilst on "the sick"during which your pension will continue to accumulate. For me the lump sum worked cos I had an income protection policy which was not affected by the lump sum but would have been affected by the pension.

Be careful about the length of time it takes.....gathering information took some time...i think this was due to occ health doctor who was very slow in requesting the info she needed...the pensions woman chased her continuously! Once the information was submitted NHS pensions/ ATOS made the decision within a few days.

The trust need to know the decision immediately you are informed so that they can terminate your employment and pay 3 months salary in lieu of notice (before the pension officially goes through) a good pensions officer will sort this out for you.

I submitted a recent MRI scan report with the info I gave which commented on progression in spinal mets.....the ATOS doctor said in his report that any treatment could only be palliative...and that seemed to be enough for them to release pension as lump sum....After that I started on capecitabine and for 27 months things have been stable(touch wood!).Good luck to those going through this now...both with the pension applications and with the capecitabine!xx

Lulu34
Member

Re: Just an idea! Not sure what others think!

great news about your your tumour and nodes.... im a cape girl too but only on first cycle but its given me lots of hope.

im also in process of applying for ill health retirement from NHS.... but feels awful giving up the job im so passionate about.... but i cannot do it and it makes me sad that my brain just cant work things out any more and that even worse, i could put people at risk if i did work!

im not in any hurry though and not sure if i get more from death in service or from communated lump sum thingy. hopefully going back to see HR next week with more questions.

thanks for that Jo i might try and call them.

Lxxx
Jo_BCC
Member

Re: Just an idea! Not sure what others think!

Hi Chocolates,

 

After reading your post I think our helpline team may be able to help you here if you'd like to give them a ring.  Calls are free, 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

Also here's the link to the area of this website where finances are discussed.  http://www.breastcancercare.org.uk/breast-cancer-information/impact-breast-cancer/finances-practical...

 

Take care,

 Jo, Moderator

Chocolates
Member

Re: Just an idea! Not sure what others think!

Hi Julie, really pleased to hear your news. So uplifting and must have given you a huge boost.

Sue and Julie I'm also thinking about poss ill health retirement in the future but hoping to return to work for as long as I can first. I just have some gaps to sort out from last time I was ill re pension payments. Are you both looking at an enhanced pension because of sbc? It states on gov website that this is only for people not expected to live more than a year. It reminds me of pip restrictions - how does anyone know these things? It makes me really cross. I'd like to think I've got a good few years left in me despite my sbc label so I find it all confusing and puts me off. I'd be grateful, and hoping I've not upset or offended you, for your thoughts.

Keep well ladies, huge hugs, Hxxx
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear Madge,

                         Glad to hear your good news! Long may it continue.!  

 

I had a meeting with HR about retiring on the grounds of ill health at the end of march.  I know my reports by oncologist and GP have been submitted to HR but I think I am still waiting to see the hospital occupational doctor before things are submitted to the pensions people.  I have bone Mets and also hope to get a tier 2 pension.  I will just be glad when it is sorted.  Thanks for your advice.  I suppose it has only been nearly 2 months.  

 

Best wishes,

 

Sue XXXXX

madge1
Member

Re: Just an idea! Not sure what others think!

Hi to all you lovely ladies,
I saw the oncologist yesterday and good news that tumour and nodes have shrunk by 50-60%!!!! Although a couple of more small mets on spine have been picked up as showing healing. The Onc. also said that if they continue to shrink that surgery may be an option which I would love to have, even though it will be a double mastectomy, I just want rid of them !!!!! Capecitabine has been reduced so hopefully will be able to tolerate it better.
Sue, I was told that it can take 3-4 months to sort out NHS pension on ill health!!! The application has to go and be assessed by Atos. Have worked for NHS since 1982 !!!! HR did say that because of my diagnosis I should get it and hopefully tier 2. Hope all goes well with your application.
Love
Julie x
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear Julie,

                     Thank you so much for your post.  I am glad you are responding to treatment.  It is all so awful isn't it?  Everyone's experiences are so different aren't they.  We have some similarities in both being 100% ER positive but I am her2 pos too. I haven't had any surgery yet but my hospital are quite supportive and will offer a mastectomy if I want one.  On the understanding that they don't think it will change things.  I am also in the process of trying to retire from the NHS on the grounds of I'll health. I have bone Mets too.  It is all happening so slowly and I have no inkling if I will get it.  My department are very supportive.

 

Again wishing you all the very best with your treatments.  Long may they work!

 

Sue XX

pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear lynq, 

                   Sorry for delay in reply.  I just want to thank you for posting your experiences.  It is astounding how everyone's experiences are so different.  How horrible to think that an MRI couldn't pick up the cancer in your left breast.  I wish you all the very best with your treatments and hope they carry on working!  Has anyone suggested a gene test considering your family history.

 

Thanks again 

 

Pumpkinsue XX

Lynnq
Member

Re: Just an idea! Not sure what others think!

Thanks for that Desi. I have always been prescribed the same brand of Letrozole. It says Femara on the pack and also NOVARTIS so I always assume that I am having the original. To be honest I can put up with the pain so long as the Letrozole is doing its job. I attend a Secondary Cancer support group and I realise from there that I am not as badly off as some of the other ladies.
I use brufin and paracetamol and on worse days naproxen and co codomol, these help a lot......
Desi-2
Member

Re: Just an idea! Not sure what others think!

Yes Helen! Hips knees ankles, I was struggling with the stairs I felt ancient but so far so good! Xx
madge1
Member

Re: Just an idea! Not sure what others think!

Hi everyone,
This is my story, was given double whammy diagnosis of invasive grade 2 BC involving lymph nodes in left boob and DCIS in right boob, had all scans and rib biopsy and was told on the 18/12/13 that I had bone secondaries to my 9th rib which was expansive including soft tissue also to L2 and an indeterminant liver lesion and lymph nodes in chest affected. I am 100% ER pos, HER 2 neg.Was given Letrozole which I took for 8 weeks but symptoms became worse with chest/rib pain and further swelling under arm with pain. Had a one off radiotherapy treatment in February '14 to my rib,and a second opinion at the Royal Marsden which they said the same as my oncologist and commenced capecitabine and have just finished my 4th cycle this week, also on denosumab injections!! Good news from ct scan 3 wks ago and u/s scan last week that tumour has shrunk by 2/3rds and lymph nodes shrinking and showing scarring, downside is a couple of more mets on spine showed up, but I am what they say "stable"!!!!!! I have had side effects which at times are hard to cope with and given all the medication for them. I've not had surgery, which is disappointing and part of me would still like to get rid of them!!!! Have also been to lymph oedema clinic as have us clinical lymph oedema of left arm and have been given arm sleeves, hand sleeves and a support bra which all have helped. Have also started Statins as chemo tabs may have increased my cholesterol!!! Another pill to take!!! Will see oncologist on Monday again. I was just 50yrs when diagnosed, a good birthday present!!!! I work for the NHS but currently off sick and applying to be medically retired on ill health. Also just to mention my GP completed the DS 1500 form for PIP which I was awarded, so please everyone pursue this as it's not means tested.
It's good to read everyone's posts as I've found this has helped me immensely.
Love to all
Julie
X
2catlady
Member

Re: Just an idea! Not sure what others think!

Oh,desi,that's interesting as I have terrible hip pains with letrozole about 18 weeks in I changed brands .i asked onc nurse and she said brands or the "real"stuff doesn't make a difference. I beg to differ ! I changed brands and after 9 days the pains were awful in hips!! So much I was struggling to walk. But my concerned were just dismissed by nurse.who are we to know we just take it!
Huge hugs,Helen xx
Desi-2
Member

Re: Just an idea! Not sure what others think!

Hello Lynnq just reading through your story and thought you might be interested in my experience of Letrozole. I started taking it at end of December and roughly 10 weeks in almost overnight had the onset of all the dreaded jiont pain. I remembered reading somewhere on this forum that somebody had said the original form of Letrozole which is called Femera seemed to be kinder as regards side effects, so I asked my GP for a prescription for these instead of just whatever brand the pharmacist had in stock. He agreed albeit reluctantly as they are £1050 per packet as opposed to £50 other brands on the condition unless I notice a significant improvement in jiont pain I go back to cheap ones. Well within 5days all jiont pain had had gone! And so far not returned. It might be worth a try xx
Lynnq
Member

Re: Just an idea! Not sure what others think!

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.

Chocolates
Member

Re: Just an idea! Not sure what others think!

Lulu, I love your strength and positivity. You will make it to see your grandchild and beyond. You are a real inspiration. Despite everything you are going through your posts are always so positive and informing. I admire the way you post to help us all out. Thank you. Now go concentrate on yourself.

Much love and huge hugs. H xxxx
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear Lulu

                  Thanks so much for your post.  You are obviously very well informed.  I have only been told bits but don't know how relevant they are to me! I really hope you make it to October at least to see that lovely new grandchild.  Wishing you all the very best.

 

Thanks for posting too Desi!  I feel like I have learnt lots already.  Hopefully some others will post too to add other different things. Wishing you all the best too!!

 

Pumpkinsue XXXX

 

2catlady
Member

Re: Just an idea! Not sure what others think!

Lulu,you will be bouncing that baby on your knee. we all want to see the photo so you hang in their girl. It's not over till the fat lady sings and I'm not singing.
Massive hug & love coming your way,Helen xxxxxxxxxxxxxxxxx
Tinkerbelle
Member

Re: Just an idea! Not sure what others think!

Lulu,

 

Same as Desi, I really hope you get to see your grandchild.  It is good that your onc is positive as, in my experience, they are unlikely to give you false hope.

 

You're right; we don't know, but it is very possible that today's unrealistic hope is tomorrow's happy reality and I have everything crossed that it will be happy for you.

 

You have a great signature 'Love and light' so right  back at ya.

 

Tink x

Desi-2
Member

Re: Just an idea! Not sure what others think!

Aww Lulu I so hope you're wrong and you get to meet your grandchild. When I told my sons of my diagnosis my youngest son who's 22 sent me a message saying please mum try to be here for my children. It broke my heart and it's probably going to be a few years before they're even in a position to even try for a baby. Hope the doctors can pull something out of the bag Lulu.
Thinking of you xxxx
2catlady
Member

Re: Just an idea! Not sure what others think!

Hi,when I went for mammograms because of family history they said they couldn't test me as no living relatives with BC .but those rules have changes. I got tested because my dad's mum & all his three sister died of BC in early 40s & I then got it in my 40s. I was told last week I now have brca 2 gene. My sister is getting tested now & my son is still deciding. Apparently there is a very small risk to men carrying this gene ,but they must be vigil to symptoms. But if he ever has children especially daughters they would need to be tested.
Huge hugs,Helen xx
Lulu34
Member

Re: Just an idea! Not sure what others think!

Maliganant melanoma is the cancer assiciated with BRCA2 but its a very common cancer and less than 5% occur by genes.

Prostate too is a common cancer but where we see it in youger men then that can raise a suspicion...... But its unlike to be confirmatorty......

Things like having bilateral BC, two separate primaries, ovarian cancer, pancreastic cancer, male breast cancer are more likely than melanoma to be down to genes.

I went in a reserch study, now called BOCS (breast and ovariain susceptabity) study which tested for the main changes. However miine wasnt a main change if i had known in 2006 what i known now im sure id have made different choices.

When i developed the second primary in 2009 i was referred back to genetics...... My mum had bc and my great gran so thats why i was tested in BOCS.... But when i tested positive mum was tested and was neg and we discovered it came from my dads side.....

Thankfully my sis and dads brother are both neg but there are still at risk folk out there including my kids who need checked.....

My daughter is pregnant and due in oct. Hoping i can make it to then being totally realistic i think its unlikely but you just never know. And my onc is being very positive too.

Love and light
Lulu

Desi-2
Member

Re: Just an idea! Not sure what others think!

That's really very interesting ! I have no family history of breast cancer at all but my dad had prostate cancer and my grandfather, mother sister and brother all had or have skin cancer in varying degrees. My grandfathers being the worst but he died some thirty years ago now so I guess treatments were very limited then. This thread is proving to be very enlightening.
Hope things start to look up for you Lulu xx
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Hi Lulu,

               Thanks for your post. It is really interesting but horrid luck to have got the brac gene when only distant relatives are affected.  How did you actually get tested was it something you did personally or was it organised for you?  We often don't know what our families had or suffered from generations back do we? My GP did suggest I have the test considering my age and the fact that I also had a malignant melanoma in situ diagnosed and treated last year.  I don't know of any relatives with breast cancer.  However my oncogologist said that prostate cancer is also caused by the same gene and that is what my uncle died from and my father is being treated for.  The hospital where I am treated haven't suggested it though.  I think skin cancer is caused by the same gene too.

 

I hope the rads work on your lung and then you can start xeloda again.  Wishing you all the very, very best.

 

Pumpkinsue XXXXX

Lulu34
Member

Re: Just an idea! Not sure what others think!

hi Pumpkinsue

my gene came from my dad..... and there are only 2 other people with associated cancers and both quite distant..... my grampa's brother who died at 43, and his cousin who died at 45 from ovarian cancer. im the only one with breast and iv had that 5 times.

since i posted last i was admitted following an episode of coughing up blood after commencing Cap on friday. i was discharged after on sat. and saw my onc for results in mon.

lung tumour showed progression and now is 8.2cm. no signs of a PE. and think the bleeding would have started even if i wasnt on the Cap. i started 5 sessions of rads to lung today.

but i am allowed to stop the wretched fragmin injections.

i started the Cap on fri night but had to stop this morning as it can intensify the effects of the rads..... will recommence next week.

Lulu xxxx
su-bee
Member

Re: Just an idea! Not sure what others think!

Hi sue

Yes only 10% of breast cancer is lobular I think. It is harder to detect as there are no actual lumps just deffused spots and thickening, well in my case anyway, I was lucky to be on a voluntary trail which picked up my secondaries.Also lucky that in all these years I have had no symptoms until recently, I now look about 9 months pregnant.

 

pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear Su-bee,

                        Thank you so much for contributing to the thread.  It is amazing you have been dealing with this for 15 years.  Is lobular breast cancer more unusual and like you said goes to more unusual places.

 

I am so sorry to hear you didn't get faslodex.  We are lucky to have the cancer drugs fund in England.  However, I wonder what will happen after the general election?  

 

I hope your scan results are good.

 

Best wishes

 

Sue XXX

 

 

su-bee
Member

Re: Just an idea! Not sure what others think!

Here goes with my story.

Diagnosed in 1999 aged 49 at routine mamogram, mastectomy, CMF chemo and 5 years of Tamoxofen.

Lobular cancer no lump, diffused spots all over left breast.

2009 while on an ovarian cancer trial, fluid in the abdomen was noticed, referred back to oncology. Secondaries in bones and peritaneum, 2 years on exemestine, then problem with spread affecting a kidney. FEC chemo then 2 years on arimadex. No symptons at all until November 2013, for this I am very greatful, but it does make it very hard to monitor what is happening. Applied for funding for faslodex ( i live in Wales)

this was turned down. Now on weekly taxol, don't know if this is working yet, had a scan yesterday results maybe tomorrow. Have had to cancel last few chemos as I have a chest infection.

Su

pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear Porkie and Elliedog, 

                                               Thank you so much for your posts. The sheer variety of treatments is so surprising.  It is a good thing really as everyone is different so we should have personalised treatment.  Elliedog,  the way you were discovered to be be stage 4 must be quite unique.  Porkie I wish you all the best with your new treatment.

 

Thanks Belinda, for explaining about your stage 4 friends and everything they had to fight for.  We are definitely more fortunate as things have progressed in the treatments available.  We have the ladies from a decade ago to thank for this.  I just hope we can continue to make progress with treatments.  Wishing you all the best with your treatments.

 

Best wishes to all!

 

Sue XXXX

Porkie
Member

Re: Just an idea! Not sure what others think!

Good evening ladies, I will jump in as well.

Diagnosed doubble whammy aged 54 in May 2011 with mets to bones and lymph nodes. Mastectomy and axillary clearance. ER positive HER2 negative but some positive cells with FISH amplification. Commenced letrozole and radiotherapy to sacrum in Nov 2012. Gradual progression in bone mets so commenced EE in Aug 2013. This treatment was not that successful and enlarged lymph nodes seen in neck area.Biopsy showed that whilst still ER positive also now HER2+ so commenced Docetaxol, Pertuzumab and Herceptin in March 2014. Done 4 cycles, 2 to go - so far not as bad as I expected and excluding the side effects I actually feel stronger and fitter in myself than I have for a long time so I am hopeful for a positive scan at the end of the 6 cycles. The worse thing I am experiencing at the moment is boredom and being emotionally low - always worked full tme but stopped working shortly after diagnosis because long hours and quite a stressful job so finding it hard to go from being very busy to having lots of time on my hands especially now feel less tired. But sure will be back to old self once finished chemo - then will continue on herceptin and pertuzumab for as long as it works. Like Elliedog hoping to be one of those longterm ladies still going strong in 10 years time. Hope everybody has a good weekend.x

elliedog
Member

Re: Just an idea! Not sure what others think!

Hi Ladies. Thought I would jump in here now that I have now took the decision to let everyone know my full dx.
I was dx 2013 Feb double whammey (small less than 1cm met to the liver). I had already had my right breast mx and was entering into a trial for Pertuzumab for primary ladies. The drugs company demand you are scanned otherwise I wouldn't have been scanned as the cancer had not entered enough of my nodes. So the met was found by accident really. So a change of plan was now needed. Chemo changed to docetaxol and Herceptin and instead of trialling Pertuzumab I was now having it for secondaries. I coped really well through 6 sessions every 3 weeks of this mixture. Was scanned in September 2013 and the scan was clear. Continue on Pertuzumab and Herceptin and Tamoxifen. Came of Tamoxifen about 8 weeks ago because I came on a couple of periods. Have had all the investigations and they found a benign polyp. Onc has decided that I can now go back on Tamoxifen and I am waiting for them to decide what to do with the polyp. While this was all happening I had my 6 monthly ct scan. At this point they found something suspious on one of my right ribs and that I should prepare myself for cancer now on one of my ribs. Liver however was still clear and they commented on healthy it looked.So went on to a bone scan with results now saying it was more likely to be a healing fracture. Just to make sure the results went to a meeting of consultants, scan readers,surgeon, basically anyone that may deal with my case including my fab onc. They decided it was not cancer related and I could of fractured myself at any time. So my fab nurse said that my scans are clear. I have a meeting with my onc in about 3 month just to see how I am getting on ,no scan results, but that will be nearly a year since I last saw him. So I feel well most of the time and tell myself every day that I will be one of the long term ladies (like Blondie) that will be here in 10 years time. Take care everyone.X
belinda
Member

Re: Just an idea! Not sure what others think!

Hi again Sue, all the ladies I mentioned were all stage 4 in 2004. Many of them lived out, by far, their initial Onc's predictions. I do sometimes mention them here, I think of them all daily, they all posted here and were, are a big part of my life. But reading back I'm sorry it came across as a frightening statistic. There have been many new treatments introduced in the last recent years and more to come. And we have other add ons like the Cancer Fund, for Enland and Wales? too. Many years ago it was harder to get second opinions, change Oncs for some. When I first posted here it was the time when Primary Her2 ladies were being denied Herceptin. If they developed Secondaries then they were eligible to receive it. So much has changed over the years.
I am now a heart and cancer patient. But under very good care and the heart pills seem, to me, to be making a difference but will find out how much of a difference soon. The good news is, silver lining and all that, 🙂 is that I have other chemos to try that will be kinder to the heart. Take Care, X
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear everyone,

                             Thank you so much for your replies.  I feel that by reading your experiences I have already learnt so much.  I think it just goes to show what a very complicated and nasty thing stage 4 breast cancer can be. 

 

Thank you Tinkerbelle for enlightening me about dexa scans. I must say I have never been offered one.    

 

Belinda I was so shocked to hear that there are only 3 of you left out of 40 that you started with in 2004.  Were they all secondary ladies?  Still it is a quite frightening statistic.  Also I hope you don't know mind but I was wondering if you are having active treatment for your heart or is it a case that rest from chemo will help it repair?

 

Lulu,  I am amazed by the number of treatments and things you have had to deal with over the years.  How surprising you tested negative for the braca 2 gene once and them positive four years later.  Does that means your cells developed the mutation in the following four years.  You do wonder sometimes when ladies have a strong history of breast cancer in the family but don't have a  braca gene if their cells can somehow utuate to devlope them.   I wish you all the best with your treatments and how lovely to be having a grandchild in October.

 

Wow pam01,  you have been through so much too.  It is amazing I think that as I have said before that GPs doctors etc take so long to think Mets are a possibility.  Although once diagnosed you did seem to be treated very quickly and seem to be doing well.  Your mother sounds like an inspiration too!

 

Wishing everyone a lovely weekend.  Hope the weather stays fine.

 

Pumpkinsue XXXX

 

 

Tinkerbelle
Member

Re: Just an idea! Not sure what others think!

Hi Pumpkin/All,

 

The Dexa Scan is a bone density scan, beyond that I don't think it has any diagnostic value.

 

Reading about you all being put through the wringer is very sobering, so (((((everyone)))))).

 

I don't know if it has any bearing on the course of my disease, but I was originally diagnosed (2009) with mixed ductal/lobular bc.

 

Tink x

pam01
Member

Re: Just an idea! Not sure what others think!

So here goes...my story to add to the picture.

I was diagnosed with a small (2.2cm) mass in my right breast in Dec 2005. ER+ve,PR+ve HER-ve. No nodes, no vascular invasion, no lymphatic invasion. i had lumpectomy and sentinal node biopsy (actually 5 nodes were removed all negative). I had 6xFEC, radiotherapyx 4weeks, and then started on anastrozole for 5+ years cos chemo had knocked me into menopause(which was monitored with blood tests). I was told good prognosis >92% 10year survival. I was 45 at diagnosis.

In Dec 2010 I hurt my back whilst doing zumba (actually 5 years to the day of the mammogram which led to primary diagnosis!).....It hurt but I carried on working,lugging notes to clinic etc ( I was a healthcare professional). I had pain at the site when coughing and it throbbed at night. Christmas came and went and I remember my back ached having stood all day. It got a bit better and we went on a 7 day cruise down the Nile (including a hot air balloon ride). It seemed much better but when I returned to work it ached when I was at a desk writing.

I decided to phone my BCN...I knew what to say!!.....persistant, pain at night , upper back(unusual site for back pain) etc. she organised a bone scan without seeing me. I was seen in clinic a week later....scan suggestive of secondary in upper back.........Next day I had MRI and CT....they called me in for cancellation at 2pm... MRI showed severe collapse of T4 displacing spinal cord (since reported as in contact with rather than displacing!) and some involvement of T3 and T5. I had emergency radiotherapy (I was under radiotherapy machine by 5.15 having had all the planning etc done). I had 5 days of radiotherapy...with steroids etc, and was started on exsemestane and monthly zometa.

Following this I had 3 monthly MRIs which showed stability for a while but then my markers crept up. In Feb 2012 a repeat MRI showed multifocal disease in my back (but stability at the original site) and aCT scan showed no other disease.

I was commenced on capecitabine.

I have had regular markers which have been largely stable and 3 to 6 monthly MRI scans...I have not had a CT scan since Feb 2012. Last scan showed my back stable.

In Oct 2013, I fell onto my right arm whilst on hols in Granada. It settled a bit but by Jan 2014 was throbbing at night. An XR of my shoulder was suggestive ofa pathological fracture due to secondaries but there was some uncertainty. It was agreed to re XR in 6 weeks. a re XR showed it had healed and the conclusion was a simple fracture.

I took ill health retirement from the health service 2 years ago.

I have 2 sons. 23 and 22. The oldest is hoping to go to Sandhurst after doing an MSc but has been delayed by a stress fracture. The youngest is doing medicine.  

My mother had BC diagnosed in her 70ys and a secondary diagnosed in 2006. She is 91 and doing OK.

Pamx

Lulu34
Member

Re: Just an idea! Not sure what others think!

happy to give my details too.

I was diagnosed with right side ER+ BC in April 2006. Had WLE and node neg SNB. Had rads x 25 to breast and tamoxifen.

In May 2009 i was diagnosed with a new primary TNBC the other breast screen detected. I had WLE and another node neg SNB. I had chemo.... Epi x4 + CMF x4. And rads x 25 to the left breast. Went back on tamoxifen.

In Jan 2010 I was found to carry a BRCA 2 mutation after previously testing neg in research trial in 2006.

Was diagnosed with a recurrence of TNBC in my chest muscle lymph nodes in Aug 2011 on routine annual BRCA MRI. Had wire guided WLE and ANC still node neg except for 2 the Interpectoral LNs.

I had Carbo & Tax x6. And another rads x20. And went back on tamoxifen again.

2yrs to the Day i was diagnosed with 2cm lung mets and to the right lung and right sided paratracheal and hilar nodes on my routine annual BRCA MRI.

Had a bronchscopy which kinda confirms it wasnt a new lung primary or the recurrence of the ER+ one but does kinda confirm the TNBC.

In the ENCHANT trial i had GANETISPIB twice a week for 3 weeks on, 1 week off. For 17 treatment over a 12 week period. I was taken off trial as i developed a Pulmonary Embolisom and severe epistaxis due to dalteparin injections and my tumour had grown 75% to 35mm on my CT scan on the 7th of jan 14.

Just before starting on Tax Chemo i got a severe headache and vomiting and visual disturbance however a CT scan revealed on the 1st of Feb 14 was normal.

Was admitted during my 2nd cycle with neutropaenic septicaemia down my Hickman line. A very rare bacteria called delftia acidovorans which is involved the creation of gold nuggets. Who knew!

Was admitted following the my 3rd cycle again with septicaemia.

Chemo wasnt working and tumours had basically doubled in size to over 7cm.

Was waiting to start oral chemo tablets however i developed word finding difficulties and had a CT brain and this confirmed brain mets..... Steroids started. Saw onc a week later and he wanted me to have an Head mri to confirm the number of lesions. Just completed whole brain radiotherapy yesterday and about to start oral chemo tomorrow.

Btw I was 37 when first diagnosed I am now 45 and I am health professional.
I have two children, a girl aged 23 and a boy of 19, I am about to become a granny in October.
Love Lulu xxx
belinda
Member

Re: Just an idea! Not sure what others think!

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.
pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Not sure what happened there.  I meant to say reading everyone's posts last year not pomuch!

 

Also I don't think you waffled on Desi 2.  I have found everyone's posts informative and interesting.  I already like I have learnt things. There is such variety in treatments.  

 

Sue XXXX

pumpkinsue
Member

Re: Just an idea! Not sure what others think!

Dear ladies, 

                        Thank you all so much for your posts.  I think there have already been some intersting similarities, like Gigli says a lot of us are in our mid 40s.  It is interesting how they do mammograms from 40 in Canada and are thinking of reducing the age here.  

 

As Chocolates has also pointed out teaching or the field of education  as a profession does seem to be a common issue too. I was a primary school teacher for 14 years before I had my children.  Since they were born I have worked as an administrator in the NHS.  I have always had a problem with commas so I apologise for that.

 

 

Angela, it is interesting that you mention your tumour markers as I have only had mine taken twice in a year.  I think it is something I must chase up!  Also finding out about your braca 2 gene sounds interesting can that open up the possibility of different treatments for you?

 

Tinkerbelle, you mention 2 Dexa scans just wondering what they are for?? I know I haven't had any!

 

Thank you Mrs Blue for your note of caution.  I have read your post about wanting a more private forum.  This would be good but I must say how much I appreciate the fact that people are so open on here and it helped me no end last year when I could read everyone's pomuch 

 

I also think it is interesting how some of you like Desi 2 despite having a primary still have to go through so much before getting your secondary diagnosis.  You think that GPs etc would be looking for a return if you have had a primary diagnosis and are showing any symptoms.  

 

Something else that I find interesting is how scans seem  be open to so much interpre

 

Desi-2
Member

Re: Just an idea! Not sure what others think!

Tink the MRI was done due to sudden increased pain in lower back and radiating down left leg. I couldn't lift it more than a couple of inches off the floor. They were worried about spinal compression but luckily that was not the cause, just muscular but they do think the progression in the sacrum could be a contributing factor so hence the rads and to be honest the bone pain has got worse last couple of days so il be glad of the rads. There was a lady on here that has had same problem and found radiotherapy ver helpful with the pain. Xx
Tinkerbelle
Member

Re: Just an idea! Not sure what others think!

Hi Desi/All,

 

Desi, you are very welcome to follow my progress.  You can always send me a private message if you wish.

 

It is interesting isn't it how different hospitals utilise different treatments.  I started my AI treatment about the same time as you Desi and with my progression to lungs after 3 months (scanned in April) onc felt that aromasin wasn't working and to stop taking it and onto chemo.  It could be that they are waiting to make a decision on your lungs, I don't know.

 

If you don't mind me asking, what promted the emergency MRI?

 

Mrs Blue - you are right of course, this forum is public and I know that some ladies are not 'out' so it may be best not to give easily identifiable information.  Anyone who could identify me from my posts, I think, knows it all already.

 

Tink x

gigli
Member

Re: Just an idea! Not sure what others think!

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

mrsblue
Member

Re: Just an idea! Not sure what others think!

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.

Chocolates
Member

Re: Just an idea! Not sure what others think!

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.

Desi-2
Member

Re: Just an idea! Not sure what others think!

Oops also wanted to add I am 49 I have three sons 22 25 26 eldest at home for a little longer middle son living in London 😞 youngest lives locally. I am in a relationship and have been for 17 years but bit complicated. My ex husband and his partner have been quite supportive tho. And I have a two brill sisters.