I have been diagnosed in the past month with secondary breast cancer. The primaries are in both breasts and lymphs, with multiple metastases in my bones (mostly in the spine) and a single small tumour in my right lung.
My oncologist has put me on to tamoxifen and bonefos as I am 8 out of 8 hormone receptive (???).
I am having a second opinion consultation from another oncologist next week, who has indicated that he would rather treat me with chemotherapy.
Does anyone have any advice on which route I should follow – hormone therapy or chemo?
This is all new to me as I only found the lump in my breast last month, so I have not had any prior treatment.
So sorry you are having to join our secondarys club but you have found us and we are all here for you anytime you want advice or a chat we are here and we all understand what your going through.
My dx was primary and secondary’s to both lungs multiple mets all at the same time, my course of action or plan went like this first chemo to reduce the primary and work on the lung mets I am ER+ 4 out of 8 and PR- and Her2+ so 6 chemo’s with herceptin was the first course of treatment then onto surgery to remove the primary this is a personal decision and I decided to get rid of the mother lump in my right breast the surgery went well and due to doing chemo first the lump was reduced from 6cm to 2mil and when they did the surgery they had clear margins, I also had all my lymph nodes taken 13 in total and only one showed infection and we knew that it was in my lymph nodes before as they were swollen. Just finished 15 rads as a safety precaution, the stuff on my lungs is now tiny and stable so something is working to keep them at bay my own personal hunch is that its the herceptin I am now on tamoxifen as well and the herceptin will be given to me for as long as it appears to be working.
Looking back over the past year and the treatments I would say I am happy with the way things have worked out and that I believe the course of treatments was the right course of action for me. Basically I would say to you go for it take whatever they want to throw at this thing do the chemo its not nice and the side effects can be nasty but its only for 6 months and chemo really does pack a punch with this cancer crap, surgery is a personal decision and I would urge you to discuss this with your breast care nurse, if you have been assigned one or GP alternatively you could phone the helpline 0808 800 6000 to get advice, again very personal choice, tamoxifen will always be there at the end of it all to help block the estrogen.
Sorry I’ve been rambling on now for ages, hope this helps if you want to speak in more depth please pm (private message) me.
Sorry this is going to be a long reply:
As you have already grasped the medical profession are quite divided over the issue of the best treatment for secondary BC, consequently, I’m giving you details of my story which may help you decide.
I was diagnosed with BC in November 2009, and during my mastectomy/lymph node clearance in Jan 2010, they discovered that 14 of 24 lymph nodes were infected. This led to various scans, and the discovery that the cancer had already spread to my bone (3 mets to the skull, but nowhere else).
The first Onc said there would be no point in giving me curative treatment (chemo and rads), because advanced BC is incurable. His plan was to give me palliative treatment (endocrine therapy to suppress oestrogen production, and bisphosphonates to help preserve bone), followed by chemo when endocrine therapy failed. His prognosis was 18-24 months.
I wasn’t entirely happy with his plan, and prognosis, so I went for a second opinion at a teaching hospital in London. The second Onc said that if there is limited spread (under 5 mets), they have found that curative treatment is still worthwhile, because it seems to extend survival (and in some patients the cancer disappears and doesn’t return). He added that if I followed the palliative route I would stand “zero chance of survival” - because palliative treatment is about delaying progression, rather than cure. His prognosis with curative treatment was five years at least - so it was a no brainer for me.
I had chemo, followed by conventional rads, followed by Cyberknife stereotactic rads for the remaining skull mets. At my last lot of scans, the skull mets had not only disappeared, but had healed over with healthy tissue - and there was no evidence of disease anywhere else. I am now taking endocrine therapy and bisphosphonates to help stop recurrence.
Of course this does not mean I am cured, and it is important to say that some people have cancer disappear while taking endocrine therapy/bisphosphonates, because depriving oestrogen receptive cancer of oestrogen will effectively starve it. However, cancer is very clever, and frequently adapts to find another oestrogen pathway - and as at the moment there are only three classes of endocrine therapy (approximately), the options can run out quite quickly, leaving chemo as the only option.
Hope this helps you decide.
As Lemongrove has already said how secondaries are treated varies a lot between oncologists. I was diagnosed in 2008, age 42, with secondary BC, two months after primary diagnosis. I was told that I had mets in my bones and liver. However the current thinking is that I have never had liver mets but I definately have 3 hotspots in my skeleton, 2 in spine and one in my hip. The change in diagnosis happened when I changed oncologists.
I pushed for the full works i.e. mastectomy, lymph nodes removed, rads to chest wall, armpit and neck, 8 sessions of chemo, herceptin, pamidronate, and tamoxifen. In all I had 12 months of quite harsh treatment and it did take it out of my a bit. I think I made the right choice as I am still well and pretty much do all the things that I did pre-diagnosis. The mets in my skeleton are still visible but a lot smaller, so I am definately not cured however I have been stable for 3.5 years now and I think throwing the kitchen sink at it has helped.
I am currently taking tamoxifen and herceptin.
My oncolgist said he is lining up his bullets and if I get progression will look at non chemo options first i.e. change the hormonal, and try something like lapatinib.