I was diagnosed with Lymphoma sixteen years ago( I’m 56) and spent 18 months having comtinual treatment including RT which hit vulnerable tissue and caused a mucinous BC five years later. I was glad to be alive and accepted this as a consequence. I was assured that mucinous BC’s rarely spread. A lumpectomy would suffice. Six years later it returned in the same breast and I had a mastectomy. I was again given reasurances and a bone scan showed a " dodgy hip " but I was told this was more than iikely wear and tear or the beginnings of arthritis. This " artrhitis"-sore hip, groin, limp-has got worse lately so I had an X Ray which has come back " suspicious". It seems that bone mets are suspected. I am slmost at the end of a long-winded , very sad divorce and have recently got back in touch with an old freind, a lovely man with whom I am about to start a new life. We are SO happy and excited and now this…I am devastated. I don’t know how to reassure him or how to carry this as all the info I read gives me such a grim prognosis. My daughter gets married in July…hr teenage and young adult life has been overshadowed by my repeated cancers…and now her wedding day will most likely be too. The combo of all this is devastating…I’d appreciate knowing how others handled this…what kind of treatment awaits etc etc.The idea of yet more chemo, hair loss, debilitation fills me with dread. My partner says he wants to care for me if the news is as is expected, but I just don’t want him to have to deal with it. It isn’t want he signed up for-thugh he knows the risks…in turmoil frankly.
Hi Wendb,
I’m so sorry you’re having to deal with such a lot. You’ve come to the right place for support though - there are lots of people here who will understand how you feel and who can give you good advice. Ask lots of questions, and look at the Bone mets, please join in thread. It might also be worth asking if there is a specialist secondary breast care nurse at your hospital.
My original primary diagnosis was eight weeks before my wedding. I’m so glad my husband wanted to carry on and he has been a great support to me. We thought we’d beaten it but it came back last year (12 years on) and it’s really tough going through it again isn’t it? It’s going to take time to get your head round it. The most important thing to remember is that this isn’t an automatic death sentence, it is possible to live with this for years. And things will get a bit easier once you have a treatment plan in place and start to feel a bit more in control.
If you have got to have mets, bones is the best place for it to be - it’s very common and there are lots of treatments out there. You will probably be offered radiotherapy and a drug called Denosumab which stops the bone breaking down. If your cancer is hormone-receptor positive, you will probably be put on hormone therapy first rather than chemo.
Best of luck and virtual hugs and please let us know how you are getting on.
Marion
Hi Wendy,
Marions reply put things so very well and mch better than I ever could. Just wanted to add my hugs and best wishes. b.Cancer treatments are really banging on now and they will be looking at the ideal ones for you.xx
do come back and let us know how things go. We are all here for you.
Moijanxx???
Hiya Wend b
I would just like to welcome you to the site and I’m glad that you have had a couple of replies.
I have mets to hips femur and pelvis …which was misdiagnosed for nearly a year as arthritus trapped nerve sciatica etc but have been controlled for this year with letrozole and denosumab inj.
I was 16 when my mum was dx with bc and there was 7 years of her being up and down with it all before she died when I was 21 but looking back the family coped and it became " normal". That was 41 years ago though …still miss my mum but admire her strength to fight this thing without chemo rads and hormones which is the standard now.
Hugs
WendB, Wow, You have been trough a lot. I’m holding onto hope for you that this is not mets to the bones. I understand your feelings on your daughter having to watch your journey of cancer. I was dx with my primary bc in 1995, my daughter was 9! I had been going to the gyn and surgeon trying to get answers and a plan of action. There had been a ton of tears and my daughter had seen some of these, some how it all zoomed over my boys heads who were 12 and 18. One evening I had an appointment with the surgeon and my daughter went to a friend’s. Hubby and I went to the surgeon. She told me I needed further scans bc with the size if the largest tumor and having 3 tumors, I wasn’t going to be worth a mastectomy. (That was her exact words.) Well, When I got outside her office I flipped! I called my friend and asked if Kym could spend the night, it was a school night. The next day my daughter said, What is going on? Don’t tell me Christmas is coming! (Our excuse we always used when hubby and I weren’t sharing our conversations.) I’ve seen you crying, goin to the Dr and staying at a friend’s on a school night is never allowed. We hadn’t told the kids bc we wanted answers and a POA first. We also knew they were going to be extra scared because my son had a friend whose mom died from bc the month before. We sat them down and told them. My daughter looked at me and said since nana had this and now you have this does this mean I’m getting it?!?! This blew my mind that a 9 year old who was just getting boobs had to be afraid of them. My daughter is now 30, and started getting mammo’s when she was 25. My daughter has dealt with breast cancer almost her whole life! We all want to protect our kids from this! Hugs and best wishes! Hope you have your answers soon! FF
Wendy, just wanted to add my best wishes to the rest. Lets hope its not bone mets but take heart that your mamo was clear. Keep in touch. x
Hi Wendy,
I am only just a catching up with posts and wanted to respond to yours. How are you doing? I wondered if you had any results yet as to whether it is bone mets or not. I know it is so hard waiting to find out what you are facing, especially with Christmas rapidly approaching. My initial diagnosis was a long time ago now - back in 1990 I had my first primary bc and over the next 12 years I had several recurrences, finally losing both breasts. In 2002 I developed really painful sciatica and couldnt put my weight on my left leg. Hospital were very good and same me quickly - no messing about with GPs! - and secondary bc was dx extensively thru my bones. Why am I telling you this? cos I have lived with 2ndaries now for 14 years. Most of them I kept fairly active and did quite a bit of travelling. It is only the last 3 years that life has been a bit of a struggle so far as mobility goes. I haven’t had to cope with chemos over the secondary years as my bc is her2 positive so for 10yrs I was on herceptin and bone drug zometa. I think there are quite few of us who have had bone mets for several years. Treatments have improved so much since my bc was first diagnosed.
I do hope that your news has been good - but we are all here to keep you company if it isn’t. Do come and let us know.
Dawn
xx
That’s good to hear- Thankyou. My bone scan isn’t until the 28th so I have to wait all over Christmas! But I’m trying to focus on that and treat the scan as " just something I have to do" though my daughter will still be here then and won’t miss much! It’s such a help knowing that you are all here! Thankyou x
Thankyou x