Hi, I just wondered if someone could give me some advice, my friend has just called me to let me know that she has had results from her bone scan which says she has secondarys in her spine, hips, pelvis and ribs, her doctor says that there is no treatment for her, but she has yet to see her oncologist (at Canterbury hospital) I live in Yorkshire and feel so far away from her, she is being “fast tracked” for an appointment, but I just feel that I need something positive to tell her, has anyone got any advice?
Hi BessieBoo, I think you need to wait until your friend sees her Oncologist to see what treatment he/she is going to suggest. I was just going to say that I was diagnosed with exactly the same TEN YEARS ago. I have it in my spine, ribs, pelvis and sternum too. There is lots of differnt things that can be tried to help with bone mets. There is radiotherapy, or chemotherapy and lots of different drugs too.But the Oncologist will explain this better.
Just let your friend know we are here and she may want to join us on these forums, to get support form women in a similar position. (Of course I realsie that she may not have access to a computer herself).
It can be a very scary time as she has to take in all this new information. Perhaps you could suggest that she takes someone with her when she goes to the hospital as it is difficult to take it all in when you see the doctors. Also writing down any questions she may want to ask at the meeting. I often come out thinking I should have asked something. But if she does forget anything there should be a Breast Care Nurse at the hospital who may be able to help. But it is early days yet and it can sometimes be more confusing if you read too much too soon. One day at a time is best. Love Val
Hi Bessie Boo
I can only back up what Val has said but also add that I’m surprised she has been given such a negative response from her Doctor, she must be in despair at the moment. I was dx with bone mets in April last year, I’ve had chemo and continue with bone strengtheners and hormone treatment (just tablets). There are many treatments available and if areas such as hips are really bad a hip replacement can (and is) done. I hope she has some support over the next few days until she sees her oncologist as the waiting to find out what the next step is is very worrying. If she is able to forums such as this one and particularly this website will give a lot iof information about what treatments are availalbe and what having secondary bc means. Just make sure she only reads the bits she needs to ie about bone mets, it can be very scary reading absolutely everything about secondary bc, particularly when first diagnosed.
Wishing her good luck
Nicky
Thank you Val and Nicky, I will pass both your messages on to her this morning, unfortunately she hasnt got a computer, but I know both your advice will help her alot, as when I spoke to her last night she was very depressed, the doctors negativity surprised me too, but I said to her that he isnt the expert in this. For her to hear that there is medication too, I hope the appointment comes through quickly for the oncologist, thankyou both again Shirley x
Hi Val and Nicky, my friend has seen her GP today, who seemed much more positive than the first doctor, he said she should have her appointment within 2 weeks with the oncologist and that they would be able to discuss what the way forward would be. I just wondered if you had any questions for her to ask, so that she can get a list ready for when she goes. I read both your posts to her, and she seems much more positive now - so thankyou again. I wish she had access to a computer so she could get help from this site. Shirley x
Hello Shirley, I got exactly the same diagnosis as your friend earlier this year (even the hot spots are the same areas) It was very very daunting at first especially when you are told they cant be cured but I am just on one tablet a day for bone strengthening plus my daily Tamoxifen. Apart from feeling a bit achy in the morning I am feeling really well. Saw my Onc in November and had more extensive x-rays but thankfully there was no more spread. Many women have bone mets and live with them for years (the longest I have come across is 20+ years and still going strong)! I hope you can calm her fears. It is a great idea to write questions down, in my case I wanted to know what could be done for me if the tablets were not keeping it at bay and was told that raidotherapy can be used on the affected areas if necessary. I wish your friend well with her forthcoming appointment and I hope she gets as much good news as is possible - I am sure the panic will subside once she has more info from her doctors x give her my very best wishes debbie x
Hi Shirley,
I am another one who has been living with this for some time now. My first diagnosis was in 1990 and in 2002 it spread extensively to my bones - spine, ribs, skull, hips, pelvis etc. It is indeed very treatable. One word of advice I would offer is that if she is offered radiotherapy for the pain - unless the pain is very severe I would with hindsight put off radiotherapy until I found out if the bone drugs gave relief. The bone drug I had was an intravenous one and after 3x treatments (3 weekly) I was more or less pain free. The trouble with radiotherapy is that it can halt the growth, and give pain relief (but not always) but you cannot repeat the rads to the same area. Has she had primary breast cancer before or has this all come at once? If she had breast cancer before did they check to see if she was HER2 positive? Those are a couple of things to watch out for that you can pass on.
Dawn
xx
Thank you both, I passed your comments onto my friend this morning and she wants me to thank you for your kindness and that she does feel that theres hope now. She has been to the doctors again today and hes given her something for her anxiety and he is pushing for her appointment with the Onc. so hopefully it should be soon. Dawn, she has had primary breast cancer, so this is a secondary, but she didnt know if she was HER2 positive - so she will ask when she sees the Onc. Thankyou both again. Shirley x
Hi Bessieboo
I was diagnosed with bone mets a few months ago after primary bc diagnosis last year. The first chemo they tried on me didn’t work and situation continued to get worse. They changed my treatment 7 weeks ago and within days things started to improve. I was in intense pain initially which has now got so much better. We all know the dark place your friend has been - we have all been there -and having a great friend like you makes all the difference at such a difficult time. Really bad for doctor to give her such a negative prognosis when he is by no means the expert, I do hope she sees her onc asap.
Please tell her we are here for her and if one treatment doesn’t work they have many others that can help.
Sending you both hugs. Anne xx
Hi Shirley
Sorry I’ve not replied sooner but, as you can imagine, it’s a bit frantic this time of the year. I hope your friend has been able to enjoy herself but it is very difficult when you have this diagnosis hanging over you. Other than the questions already suggested she will need to know if she is hormone receptive or not (she will probably already know this from her primary dx) and her HER2 status. This will affect some of the treatment she might get, particularly as a continuing treatment if she has chemo to begin with. It might aso be worth asking how they will monitor her progress. During chemo I was scanned (CT) half way through and then at the end, since then I am on 6 monthly scans and followup onc appointments to see how stable my mets are - luckily they are all doing well at the moment. I can’t think of anything else but wish your friend a speedy oncologist appointment so at least she can have a more informed conversation.
Nicky x
Hi, thankyou again for getting back to me, I have just phoned her with your comments, her appointment has come through for Monday at 940, so thats good, should be running on time that early. Told her your questions, and shes written them down, shes going to write down what the onc says, so hopefully any questions she has I can ask them on Monday. Well, lets all hope and pray for a Happy New Year, thankyou so much again. Shirley xx
Hi Val, Debbie, Dawn, Anne and Nicky, my friend has had her appointment this morning, the onc said that they are not 100% sure if its secondary from her bc (1999) or from somewhere else. They want to do a scan on her torso, and also a specialist scan on her rib (they cant operate for that) she will go to a hospital in Stanmore to check the bone tissue. They cant do chemo and will only do radiotherapy when the pain gets too bad. She has been referred to the hospice, and she was told if its from her bc shes got approx a year and if from elsewhere then less. They will give her biosphates(?) tablets too. So, another wait until the scan and bone test, but I somehow thought or hoped for better news, she seems quite calm, and thats all I know for now. Shirley xx
Hi Shirley
Well, I am surprised that she is only going to be getting Bisphosphonates as there are many treatments available for secondary BC. However from what you have said maybe it is not secondaries? If she is not completely sure of what she is being recommended after the next set of scans and tests it might be worth her getting a second opinion at say The Marsden? Wishing her all the best and hope she gets some more positive answers.
Nicky x
Hi Nicky, I was surprised it seemed so negative too, I will say to her about the Marsden, hopefully the next tests will come through quickly. She said they didnt seem sure about it being secondary, I dont really understand, thanks again. Shirley x
Like the other’s I don’t understand as there as so many treatments for bone mets - I’m on my second in a few months. I do hope the next tests come through quickly and she can fully understand what’s going on.
I do hope it turns out to be better than current prognosis.
Anne xx
Hi Shirley and everyone else. Hopefully your friend will get better news after the tests are all done.
I’m confused about treatment for bone mets also. Dx with mets to spine in June 2009 and a rib met Dec 18th 2009. I was told that there would be no chemo and have not had any bone strengher drugs, and was told the side effects were probably not worth it. Was changed from Arimdex to Aromisin. Had radiotherapy on one spot in my spine, possibly having rds for the rib.
All my team say is that the mets are stable, everyone seems very blaise about it. I don’t understand if something is stable, how comes there was one Met in June and now I have four. This is very unusual for my team, my oncologist throws everything at cancer, no expense spared. It wasn’t until I read others on here stories that I have begun to question what is going on. Still don’t know but will keep asking.
Best wishes to you all.
Paula x
Hi everyone, I just thought I would let you know that my friend went for her scan, and they have found “spots” on her liver, so now they are not doing the bone test but sending her for a liver biopsy on Weds. They also sent the nurse round to see her from the Hospice. I have told her that wait until the results from this test and then they will decide what treatment she is to have.
Shirley
x
Hi, I just thought I would update you all and thankyou again, my friend is going for a bone biopsy tomorrow in her pelvis, she had a liver biopsy and they didnt get enough of a sample, they still dont know whether its primary or seconday (I dont understand how the treatment differs and neither does she) she has found out now that she had grade 3 in one breast that was 10 years ago, she has an appointment with her onc in 2 weeks time. It just seems to be taking so long to get any answers for her. What I have said to her is that I can print any answers off this site for her which may help. If anyone can I would appreciate it.
Shirley
x
Hi Shirley
It seems odd that they are trying to establish if either area is a primary however maybe they have their suspicions? If, say, the liver had a primary in it it wouldn’t be breast cancer that has spread and therefore the chemo options could be different. If both sites are secondaries they can be treated with the same chemo or other drugs as they should respond in a similar way. It can take a while for them to get an accurate diagnosis and they do need to do this to know what treatment to use. Sorry I can’t be of much help and it must be a worrying time for your friend not knowing what happens next.
Nicky x
Hello Shirley,
When I finally got diagnosed with secondary breast cancer it took 6 months to find out that it had come from the breast.
When they do a biopsy they map the cell as I was told each cancer cell has its own unique make - up. Then they will know where the cancer is from and what sort of treatment your friend will need.
I know from experience that you feel in limbo but its a wait and see unfortunately. I had to wait for over a week for the mapping and the consultant phoned me at home with the news. Its devastating but it means that you have the correction diagnoses and at least her treament can start.
I hope for your friend sake that she hears soon.
With vey best wishes
Chris x