Totally confused have gone from er+pr-no node involvement and now have Secondaries in sternum and TN

Hi Folks
I hope you don’t mind me coming in on your conversation but I wondered if there is any one out there who i can share my worries with.I am 72 years young and this is my story I was DX with BC in 2007 I had a WLE which was er+pr- with no node involvement, this was followed by radiotherapy and then 5 years of arimadex.I was then dx with local recurrence in Feb 2012after a year of trying to persuade oncologist that there was something wrong and just being told i was just paranoid (not in those words).I eventually persuaded him to llet me have a bone scan and mri scan with the result being a soft tissue mass and mets to sternum.I was also told that it was most probably there right from the first dx and that it is very slow groing and this time it is TN.
I started treatment with Taxol 3weeks on and one week of for 6months but half way through I was changed to epirubicin weekly due to side effects but unfortunately I was so ill it was stopped altogether and Iwas then put forward for funding to have the Cyber Knife treatment which I was very lucky to get and in Nov successfully had the treatment which scans to date show that it has halted this horrible disease and no further spread to other organS.
Ihave been a regular reader of this forum but this is the first time I have had the courage to join in,I think all you ladies are so courageous and inspiring especially scottish lass (val) who has put up with this terrible disease for such a long time.
I will not bore you any longer but would like to know of any body who has changed from er-pr to tn and what treatment they can have as I believe I am limited to what there is out there and this worries me.
love Linda G xxx

Hi Linda,

Welcome to the Breast Cancer Care Discussion Forums. I’m sure other users will be along soon to share their experiences but please do also remember that the BCC Helpline can offer information and support tel. 0808 800 6000 (Mon-Fri 9am-5pm and Sat 10am-2pm).

With best wishes,

Anna, BCC Moderator

Hello Linda,

I was and still am an ER+ girl, not triple neg, but just wanted to reply to your post as there are a number of similarities with my own experience: I was diagnosed with a regional recurrence/mets to my sternum which my onc told me was slow-going and had probably been there all along. I was also treated with rads (conventional, not cyberknife), and they got me to NED, where I stayed for nearly five years. Although I’ve had some progression since, it is still mainly confined to my sternum area with no organ involvement and I’m still living well six and a half years on and ten years after my initial diagnosis. So you may well find that cyberknife will do a good job for you and keep things in check for a good long while. I certainly hope so. Take care and keep on posting!

Hello Linda
Sorry to hear you have had to join us.
I am alledgedy ER+, but my mets don’t seem to realise this and have happily grown during Tamoxifen and then Zoladex implants and Letrozole.
I had Rads to one vertebra, as it was giving me quite alot of pain.
Since working out that the mets don’t know about their ER+ status, I have been on Capecitabine which is a tablet-form chemo - 14 days on, 7 off. The side effects (so far) are far milder than the iv stuff. I am hoping to be on this for a good few years. I do have to go the hospital every 3 weeks for blood tests and a chat with the onc, although I suspect that after a few more cycles I may just see a nurse most cycles (but still have the blood tests of course). There are other tablets (e.g. Everolimus) that can be prescribed long-term too.
Sue

Hi Angelfalls and AmysMum
Thankyou so much for your reply’s,yes your diagnosis does seem very similar to my own and it is also so very encouraging to hearyou are 10 years from original dx.I am not on any medication since the cyber knife treatment for cancer exept calcichew while awaiting the results of a bone scan (dexa)to see whether I have to have a zoladex infusion.Iam not due another ct or mri scan until June to see how well the treatment has worked and whether I will need to go back on chemo.
Sue I am ER+2and PR- but apperently that is still triple neg and thanks for the info about chemo tabs I didn’t know you could have them for BC so I would certainly prefer to have them rather than IV.
Thankyou again it was so nice to hear back from you Love Linda.G.

Hello Lu-Lu. my recceptor status also changed and I have since learned it is very common for this to happen. I am posting a link below to a study which demonstrated that it occurs in around 32.4% of cases.
jco.ascopubs.org/content/early/2012/06/18/JCO.2011.37.2482.abstract

The fact is that most patients do not realise that cancer can change it’s receptor (the thing that stimulates it), and because most Oncologists do not perform routine biopsoies when treatment begins to fail (as NICE advices them not to), both patient and Oncologist assume that progression is due to cancer becoming resistant to treatment.
In my case, when I was first diagnosed with secondary cancer in 2009 , my cancer was strongly oestrogen positive, and negative for Her2 and Progesterone. Consequently after FEC chemo, and Rads (conventional and Cyberknife stereotactic RT), I was put on endocrine therapy (Letrozole). When I eventually had progression to my spine in November 2011, my Oncologist simply assumed my cancer had become resistant to Letrozole, and so tried different forms of endoctine therapy (Exemestane and then Fulvestrant). By September 2012, it was clear that neither of these endocrine therapies were working, and so my Oncologist very sensibly ordered a biopsy of a node in my chest. This biopsy showed that my cancer had changed from being ER+ to Her2+. so I was then put on Herceptin and an oral chemotherapy drug called Capecitabine.
Unfortunatley though at Christmas 2012 it was found that I have 5 brain metasteses, so as this new drug regime worked on other mets in my body I can only assume the brain mets were already there when treatment started. Consequently, I do now wonder if they had discovered that my cancer had changed it’s receptor a bit earlier, I would have received appropriate treatment a lot sooner, and perhaps my cancer would not have progressed to my brain … who knows?
Anyway, the moral of the story is that if treatment begins to fail, people should demand a biopsy. It’s just no good hoping that a change of treatment will work.

Hi Ladies

I has no idea that bc can change from ER+ to triple negative. I was dx on 28 Dec 12 with IDC grade III, 0/2 nodes, ER+, PR+ , HER2-. I am currently undergoing 6 x FEC, then to follow with 6 weeks rads & 5 years Tamoxifen. I was very confident that Tamoxifen would work as I’m highly ER/PR positive (8/8 according to my path report) however having read this thread I feel more unsure BUT much more informed & will listen to my ‘female intuition’ if I feel things aren’t right. What sort of things should I be looking out for or aware of? Any tips or advice would be greatly appreciated so feel free to PM me.

Thank you & good luck to you all for the future.
Dyane

Dyane, this thread doesn’t apply to you because you have stage 3 primary cancer - it is about secondary cancer, i.e, cancer that is no longer confined to the breast and lymph nodes, and has become systemic.
The thing about secondary cancer is that over a period of time, secondary cancer can change it’s receptor. This means that while the original primary may have been ER+ for example, it could eventually become either Prog+ or Her2+, or triple negative or triple positive. Also having chnged it’s receptor once it can then change again. So what started out as ER+and then became Her2+ can still become triple negative or triple positive.
If you have primary BC it’s probably best not to read posts in the secondary section because you could become unduly alarmed.

Lemongrove your so right bout best not to read in threads that possibly dont apply 2 u. i also was dx 28th dec like Dyane. I hav now been sent for a ct scan as i complined of pain in my breast bone.IL hopefully get the results 2mara. My oncologist thinks its nothin but of course my mind was racing away with me an I have been reading about secondary cancer and now hav myself worked in2 a state. Lu-lus post especially because everyone thinks im just being paranoide. At one point over the WE i thought my OH was going to take my laptop and throw it out the window.lol Dyane wanted to say Hi to you. not only wer you dx on the same day as me I think your from Nireland like myself so mayb we could keep in touch.x
Monicaxxx

Lemongrove you’re probably right & to be honest I rarely stray outside the ‘February Valentines’, although I’m glad that I read this thread. While I hope to never need this knowledge, if the time comes at least I’ll be a bit more informed. Good luck with the rest of your treatment & I wish you many years of good health to come.

Monarose I’ve sent you a PM.

Dyane

Hi Ladies Monarose and Dyane I wish you all the best and hope you get the results that we all pray for.
Lemon Grove How knowledgeable you are and what wonderful advice and support you give to so many ladies out there.My confusion lies with this problem of receptors. IN 2007 after WLE and RADS I was put on arimadex with ER+5 PRO-NEG and HER -NEG.In 2012 wa DX with soft tissue mass and mets to sternum and ER+2 AND TRIP NEG but told it was local reccurence.Iam confused about local recurrence and secondries as not sure they are the same thing also Iam stable at the moment but am told only treatment for future is chemotherapy but on one of the threads a lady(SMARTIE) is ER+1 and is on hormone Tamoxifen.I hope you can make sense of this as I am not very good at putting down what I want to say.
Best Wishes to all and Happy Easter love Linda G.

Lu-Lu, you seem to have three queries: (1) does recurrence in the sternum represent local recurrence or secondary cancer (2) Why have you not been prescribed another type of endocrine therapy when your cancer appears to still be mildly ER+ (3) Why is your cancer now defined as triple negative when it is still mildly ER+

Query 1. My understanding is that the term local recurrence means the cancer has recurred in the breast/lymph nodes and is confined to this area. As it is still confined to the breast, and isn’t systemic it is still potentially curable. The term secondary cancer means the cancer is no longer confined to the breast tissue/lymph nodes , has become systemic and spread to distant area. However, whether the sternum is regarded as a distant area you will need to check with your doctor, or a nurse on the BCC helpline

Query 2. I would guess that the reason you have not been prescribed Tamoxifen, despite your cancer still being mildly ER+, is probably because you have experienced recurrence/progression while taking endocrine therapy (Arimidex). Your doctor may feel that because your cancer is now only mildly ER+, and another endocrine therapy has already failed, that Tamoxifen may not be beneficial.

Query 3. I too am confused about why you have been told that your cancer is triple negative, when it is still appears mildly ER+. Could BCC possibly explain this ? Alternatively there may be someone on the Triple Negative thread who could provide info about this. People on that thread would also be able to give you some ideas about the treatments available for triple negative BC.
Good luck with treatment.

Hi LU-LU

I would agree with Lemongrove that it may be useful for you call our helpliners to talk through the queries you have, lines are open during the week 9-5 and 10-2 Saturdays on 0808 800 6000

Best wishes

Lucy

It’s very interesting to know that cancer can change its receptor status down the line, and that this can very easily be missed.
I’m still on a primary cancer diagnosis, stage 2 IDC, one micromet - WLE plus 6FEC, rads to come - but I do think a lot about what if it comes back, it’s only a 1 in 10 chance, but I only had a 1 in 15 chance of getting it in the first place, and I have a dark inner conviction that it may just pop up again in a year or two’s time.
So I look at tthe secondaries pages from time to time, just to get an idea of what it might be like. And pieces of information like the possibility of chganging receptor status are very useful t ohave filed away Just In Case.
I have been very cheered to see how many people manage to live with secondaries for a very, very long time,
I guess learinng o live with the possibility that the cancer may come back at any time will be part of post-treatment psychological learning curve.
More challenges ahead…

Thankyou Lemongrove I am going to take your advice and have a word with one of the nurses on BCC.
Love Linda G.