I asked this question on the private secondary forum but had limited response so out to the larger audiance.
I was diagnosed Nov 2018 with secondary breast cancer from the off set or as I understand through trolling the Internet De Nova presentation of the breast cancer.
I just completed my last and 6th cycle of docotaxel yesterday and will continue on targeted therapy herceptin and prejeta for as long as my heart will stay strong or as long as my cancer is kept at bay. I am her2 positive and er and pr positive grade 2 but stage 4, so will be kept in permenant menopause so have to decide on zolodex monthly or have my ovaries out. Any advise to that choice would be good.
But my question is they are leaving my breast lump in place as feel it’s it detrimental to remove it if targeted treatment shrinking it. Is there any one in a similar situation and also with subsequent concern about this. I know ladies have had their lump removed then went on to some time later to develop secondaries and that is a sad but different situation. I am reaching out to those women who presented out there like me with secondary disease fron the onset.
Advice much appreciated as also is the choice of chemo or treatment offered from here on in.
Welcome to the forum. My case slightly different to yours. In August 2009 diagnoised with breast cancer had mastectomy in the September but before starting treatment they give me a bone scan and CT scan that is when I was told it had already spread to bones. Had the 6 chemo then Rads. Put on Letrozole as I was past the menopause I am ER positive. I am sure someone be along who is in the same situation as you.
You never mentioned where it has spread to. Hope treatment is going OK.
Hello, I was diagnosed lobular grade 2 cancer with secondaries in liver and a rib very soon after the primary diagnosis just over 5 years ago. ER7 HER2 positive.
I then had EC chemo which put me into menopause ( I was 53 at the time) I had a few zometa injections then was changed to denosumab (which I’m still on, and the tiny area of bone mets in my ribs has remained stable always). Then I had tamoxifen, on this I brought up the subject of mastectomy! My onc agreed for me to see a surgeon who proceeded to refuse to do it, on the grounds that it would not cure me. But a scan then showed minor progression anyway so I had docetaxol chemo. After that I had letrozole. While on letrozole with scans showing shrinkage or stable I found an article that indicated that removing the primary can help even if it has already spread! (It was from America but can’t find it now as it was on my old phone sorry!) I asked my onc to refer me to a different surgeon and she did. He agreed to surgery as long as there was no reconstruction involved so as to keep the site clear. I agreed to that! So it was done! They didn’t give me radiotherapy too as it was deemed not needed as the secondaries were already known about. About 8 months later (21 months in all on letrozole) there was more progression so I changed to Capecitabine. I was 20 months on that before progression. Now I am on Eribulin, and have currently just finished cycle 4. A recent scan shows stable. Liver function tests all show my poor liver is still working completely normally!
The scar is a constant reminder of illness but I’m glad it along with the primary lump is no longer there! I mostly feel fine, still quite active and get on with as much of what I enjoy as much as is possible. Hope this helps. Good luck.
I saw your post the other week but wasn’t able to reply at the time and also as I hadn’t been diagnosed with secondaries at the same time as my primary I didn’t think I could help.
Having re read your post there are a few things I’ve learnt during my 11 years on here (and living with SBC) that may be relevant.
Not many ladies present with secondaries at the same time as primary which is probably why you’ve not had many replies. Some of us probably do have SBC at the same time as primary but until we have a scan we, and our oncologists, don’t know. I suspect if we were all scanned, which isn’t usual protocol, more of us would be diagnosed with both at the time.
Once SBC is diagnosed the aim is to control the disease systemically, ie with chemo/hormones etc. Often surgery isn’t offered when an original primary is found. My mets were found when a local recurrence in my breast was seen on a routine mammogram. It wasn’t removed because the urgency was to get on with treatment. This would have been delayed if surgery was done as your body has to recover from surgery especially your immune system if you are to have chemo. I asked again a few years later as I wanted it removed but was told it was no longer visible on CT scans and had in fact gone. It has stayed this way ever since. Sometimes surgery is offered but a period of stability is usually the criteria.
As to what chemo you would go onto next it would probably be Kadcyla as this is the next step if you are HER2+ Some, most, of the chemos mentioned on here are for hormone positive, HER2- SBC although some, such as Capecitabine can be used for both. The H and P you are on will hopefully work for many years although being hormone positive I would suggest you ask your oncologist about also having a hormone treatment (usually a tablet) alongside them. Plus of course a bone strengthener.
I hope this helps. As many of us have found out there is no definite path of treatment that we all follow, different oncologists may choose a different order of treatment although all of them are generally available for them to use.
I am in the same situation as you, I have just gone straight in with a secondary diagnosis as it has spread to my spine. The surgeon said they would not perform the Mastectomy because it was more important to focus on systemic treatment s, I quieried wether it could happen further down the line and he vaguely answered that perhaps it could be revisited if the bone mets were controlled but I felt he was trying to say what I wanted to hear as he didn’t linger on the subject.
It does upset me that I still have the primary tumours but is encouraging to hear that they can at least be shrunk.
I was diagnosed with both primary and secondary at the same time too (multiple liver secondaries).
As I am only 31 I’m on Zolodex too. I have managed this for just under a year but havent been given the choice as to whether to take my ovaries out or not. As long as im in the hospital monthly I dont mind getting the injection, from what I gather this is a matter of preference but do keep meaning to as my onc if one is better than the other.
In terms of the breast lump, I had a good response to chemo (EC) bringing my tumour down from 5.5cms to 1.5cms and throughout chemo we were not sure about surgery but at the end of it I went ont to Letrozole hormone treatment and my onc said that he would refer me for surgery (his choice). He advised there was no evidence that this can help with the secondaries but my surgeon said it has been known to help the secondaries by removing the primary (again with no strong evidence). It was ultimately my choice and I felt better in myself to have the lump removed so I had a partial masectomy with no reconstruction in Oct followed by radiotherapy in Dec. I was offered a reconstruction but my skin wasnt quite right for the one they wanted to do however my surgeon did say that there is always the possibility of recon in the future.
If you feel strongly about removing the lump I would push for it, im glad my team offered it and I certainly dont regret having it even if i am a bit lop sided!!
I was diagnosed in January 2018 with secondary breast cancer at the start, her2+ and oestrogen positive. It had spread to parts of my spine and pelvis.
I had 6 rounds of docetaxel, along with herceptin and pertuzamab. I still have the h and p plus monthly demosomab. I take daily Letrazole and calcium tablets and have zolodex every 12 weeks.
The chemo worked very well and almost got rid of the lump in my breast and the nodes. Last ultrasound scan I was told it was hard to see it.
My spine looks good too although I have lost a bit of height, I’m not the tallest to start!!
I don’t get many symptoms apart from menopausal ones. These have really kicked on now after 9-10 months on the Letrazole and zolodex. It’s hard to know what causes what symptoms and what’s to do with the cancer! My consultant said best up avoid unnecessary surgery, regarding ovary removal, but to see how I get on with the injections and tablets.
I have not been offered surgery to remove what’s left, I was told that this would not happen unless I was stable everywhere apart from in my breast.
i was told at my last appointment with him that I was under excellent control, I’m seeing him again Wednesday after my ct last week and hoping it all stays the same.
It’s so encouraging to see all the comments on here from people many years on with sbc. I’ve avoided forums up to now, but feel positive most of the time and I’m hoping to continue living with cancer for many years to come!
Good luck with it all, let me know how you get on.