I’m new to the forum so sorry this is rather a long first post. Also I probably haven’t used the right terms for some of this!
Following a mastectomy in 1991 (chemo and tamoxifen for 5years) I had more than 20 years of briliant health until 18 weeks ago when I found that the bc had returned in my chest lymph nodes.
My diagnosis was almost by accident - I was admitted to hospital with a suspected TIA (mini stroke) and a routine chest xray showed a mass in the middle of my upper chest. After scans and biopsies this turned out to be an extensive range swollen lymph nodes. A suggested pelvic scan also showed a ‘suspicious’ left ovary and a bladder tumour. Quite a shock to the system!
My oncologist did not want to start any treatment until he had the results of all the three cancers but working with three teams unfortunately caused quite a lot of delay. Results showed the lymph nodes are related to my old bc (oestrogen positive). From the scans the gyne team don’t regard the ovary problem as being a new ovarian cancer (although it is in my family) so it is assumed it is part of the secondary bc. The bladder tumour was removed and diagnosed as a new primary (no further treatment but follow up in 3 months). The oncologist finally started me on Anastrozole 4 weeks ago as I was anxious to start taking something after 13 weeks. At that time I still had no symptoms at all and was a very active 63 yr old. 3 weeks ago I had sudden breathlessness and rapid heart beat and ended in A&E where a pleural efflusion was diagnosed. They drained 2.8 litres from my lung lining which contain cancer cells. Before I left hospital I saw a new oncologist - he who told me that my tumour markers had risen over the previous 4 weeks and, with the fluid build-up, he deemed Anastrozole as not being effective for me. He has now started me on Tamoxifen and I’ll see him again in 4 weeks. If Tamoxifen doesn’t work then its chemo. He also said the latest xray showed a small amount of fluid is still in lung and of course I’m anxious that it doesn’t build up again. The last couple of weeks knocked me quite a lot as I had been so symptom free, but I’m home now and building my energy back up and the breathleness and pain have virtually gone. I feel very confident in the oncologist and now we have a plan and options I feel much better. I have a very postive outlook and my hobby is dancing - I’m keen to get back to it!
If there is anyone who has experience of my type of secondaries then I’d love to hear from them.
Hi Nellgwyn. Gosh you’ve really been through the mill! So sorry to hear of the spread after so many years of good health. I was diagnosed in may with secondaries in the lung following a triple neg bc 9 years ago and another weakly positive one in same breast 5 years ago.
I have 2 tumors on edge of right lung…one of which is more central pressing on windpipe but I also have 2 lymph nodes involved in chest…hilar and paratracheal. I suffer with breathlessness for which they gave me steroids for 2 weeks in august but had terrible side effects from. I was started on Capecitabine in july and have just started my 4th cycle. I gad a CT scan end August after 3 cycles which showed no change since my scan in may. My Onc was pleased with this as there was no progression at least. I was a bit disappointed as I was hoping for a teeny bit of shrinkage…but maybe after next scan.
There are lots of treatments out there and I’m sure they’ve got the best treatment plan in place for you.
Its great youre keeping so positive and active… …I think that’s the key! Keep dancing…as they say on Strictly!
Not sure if ive helped but nice to chat!
Take care…love Bev xxx
Oh.nel,so sorry about your diagnosis, but you have come to the right place for support and help. The ladies on this site are a fantastic,friendly bunch. We tend to hang out on bone mets thread regardless of where mets are. So when you are feeling you are ready jump in .
Massive hugs,Helen xxxxxx
Hi m sorry to hear about your diagnosis after all those years.I went 12 years after original diagnosis
I had mastectomy in 1999 no node involvement and no further treatment.In 2011 it had returned in my lymph glands so I had auxiliary clearance followed by chemo and radiotherapy and was put on letrozole as it was er+.Everything was fine till March of this year when a routine scan showed I had some chest node involvement.I was then put on a clinical trial taking exemestane and saracatinib when I picked up a lung
infection and when they scanned me they found cancer in my ribs.they then did an MRI scan and found some in my spine,so gave me denosumab for my bones and kept me on the clinical trial till the 12 week scan where it had spread to my liver .I was taken off the clinical trial and am now on capecitibine chemo .I have just completed my first cycle and will get scanned after the third to see if there are any changes.There is lots of support on this site and you seem to have a positive attitude which will get you through this.
Hi Nell, sorry you have to join us but this is a supportive place. I’ve had BC mets to an ovary since 2007, 2008. Various treatments have kept it in check. Good Luck, hope Tamoxifen is found to be working well. Ovarian cancer is in my family too. X
Nell its great you have an Onc who’s “out there” and ready for a challenge! Yes because i was triple neg in 2005 i just had lumpectomy, chemo (FEC) and rads.
In 2009 i only had mastectomy. Both times all lymph nodes were clear but i opted to have them all removed for peace of mind. At that point i was given an excellent prognosis. I then started tamoxifen because that latest one was weakly positive.
They have taken me off it now because it clearly stopped working.
Hope all goes well for you but jump in and ask about anything that’s worrying you ?
Love bev xxx
I can understand your concern as until 4 years ago I thought I had beat BC originally diagnosed 1992. . In the December 2010 I had a 3 year screening which came back clear. However, whilst on holiday in the March my husband notice a couple of small lumps on my back which I took to be bites. On my return I developed a cough which I went to the docs i also had him check the lumps but they din’t concern him he said they were cysts. As the cough didn’t go I returned a further 3 times and eventually was sent for a x-ray.
My local hospital were really on the ball I had the x-ray at 11 am by 3 pm on the same day I had a call to say I needed to call the doc. They had found sec BC in lungs. I was referred back to the breast clinic where it was diagnosed with skin and bone mets as well pleural effusion. I was started on taxol but my RL collapsed. I was hospitalised for 7 days while they drained 7 litres off my RL it was a relief to be able to breath again. After my chemo I was put on hormone treatment amridex. In April this year I mentioned an ache in my shoulder and agreed to a CT scan. Unfortunately the results were disappointing they had found a small spot in my LL so they changed amridex to exizmetane. I had a follow up CT scan in August but the results floored me they have now found 3 spots on my liver so they have put me on Capicitibane.
I have to think positive otherwise I may as well give up which I’m not ready to do I have to living to do. Stay positive from what I read we are now being classed a having a chronic condition.