New to Forum, need help bone mets

I’m not a person to seek out the help of others but this time things are different. I was dx 6/2006 with stage 3 possible stage 4. I had a lumpectomy to start, chemo, right-side mastectomy, radiation, and prophylactic left-side mastectomy, and continued Herceptin for a year. I’m triple positive. The Onc scheduled my CT and bone scans in 7/2007. The CT showed bone mets (a spread from what was suspect on the CT and bone scans from 2006) but the bone scan radiologist just said not concerned for bone mets. The Onc said we would redo the scans in December. She wouldn’t say that it wasn’t a bone mets but wasn’t ready to pursue it either. I was still on the Herceptin once every 3 weeks and tamaxafin. I just didn’t feel like I was getting better so in October I pushed to see her. My sister-n-law passed away from bc that Tuesday and I saw my Onc the same week Friday. My sister-n-law had bc mets to liver. We went thru treatments side-by-side and she didn’t make it.

I think my Onc thought I was magnifying my pain and problems because of the shock of her sudden death. I had a lot of bone pain and my blood pressure and sugar (diabetic) were way off. She did a blood draw and scheduled a brain MRI. She kept my Nov appt and I proceeded to have my last Herceptin treatment. I emailed her nurse that the bone pain had continued to get worse. The Onc decided to do a vitamin D check. I was vitamin D deficient so I started taking supplements. It helped with bp, sugar, and some of the pain. Even with the vitamin D low + the Onc wanted to move up my scans to Nov. I went the day after thanksgiving for the scans. The results of the CT and bone both said mets to pelvis and femur. She than ordered an MRI which also said mets. So next was a bone biopsy. The biopsy confirmed the mets as active and ER+ (Her2/neu test result not in yet) just this last Friday.

So, here is where I need your help. With the loss of my sister-n-law to this terrible disease I’m losing faith in how treatable this disease is. I’m very scared by the life expectancy charts I’ve read for secondary mets to the bone. I’m so confused that I don’t know what to think. Others I’ve talk to haven’t lived or dealt with this. I’m looking for confirmation that I can survive this from the people who actually are.

Thx,
JanetK

Standing by to help JanetK as soon as your post goes live. I am someone who has had extensive bone mets for 5 years now and managing well.

Dawnhc

Hi JanetK,

Glad they didnt take too long to put your post up. It must be such a traumatic time for you losing your sister in law. I also lost my sister in law at the time I was diagnosed with bone mets, so understand a little of how you must be feeling. I think that a lot of the statistics you might read on bone mets would have been based on survival figures some years ago. There are a great deal many more drugs today that for many make bone mets something we can live quite well with for many years in some cases. Mine when it was discovered 5 years ago had already spread to most of my bones. For 5 years I have been on bisphosphonate drug infusions (specifically pamidronate) and also for the past 4 years on herceptin. Over the years my bone scans have shown quite a good improvement in some areas and I am able to do without any painkillers for most of the time. Do remember Janet that all the statistics you read are just figures. There are very few of us that fall right along the centre point of those stats. If I can help any more do post or send a private message.

Dawn hc

Hello Janet, I was diagnosed stage 4 from the beginning, bone mets, in 2003.
I’ve had hormonal treatment and bisphosphonates ever since then and feel well, much better than I felt in 2003. I’ve always been told my bone mets are not curable BUT they are very treatable. I’m in my 40’s and this has taken a while to get used to but somehow life goes on and there have been new treatments introduced since my diagnosis. Good Luck. Belinda.

Hi Janet

Welcome to the Breast Cancer Care forums. I am sure you will get lots of help and advice from the many informed users of this site.

If you feel you need to talk to someone in confidence about your fears and concerns the team on the helpline will be happy to talk to you and just be a listening ear. The staff are all either breast care nurses or people who have personal experience of breast care issues. I am sure the feelings you are having are only natural but please use the support, it may help. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this helps.

Kind regards

Sam
BCC facilitator

Thank you very much for your replies. It has really helped me to know that treatments have been working so well for you. I start the Herceptin and bisphosphonate treatment this Thursday and first of 10 radiation treatments on Monday. Feeling a lot more positive.

Thanks again,
Janetk

Hi Janet

I was diagnosed with bone (spine) and liver mets in 2003 and have been on bisphosphonates since then plus I had radiotherapy to my spine because I had a fracture.

Glad to hear that you’re feeling a lot more positive - treatments have changed so much since I was first diagnosed (12.5 years ago) and I know that I wouldn’t have been here now if mine had come back within the first two or three years of my initial diagnosis (my mum and her sister didn’t have that chance unfortunately).

Pinkdove