Hi
Yesterday I received the results from my CT and Bone scan. My consultant confirmed that not only has my breast cancer returned to the left side but I that it has spread to my bones. It is showing in my spine, rib and pelvis as well as the lymph nodes on both sides of my collar bone.
I am seeing my oncologist this weds but I just wondered if anyone had any advice on how to deal with this as myself and my family are so scaredxxx
Hi Sarah,
Bone metastases are common with breast cancer. You are not alone.
The good news is that there are many treatments to help manage bone metastases, including bisphosphonates such as zometa, as well as supplements to help strengthen the bones, such as Adcal D3. Making dietary changes can also help, but again it's best to seek professional advice before you make any changes.
Exercise can also make a big difference, but I would consult your oncologist or GP before starting anything new to make sure you are well enough first.
Take care,
Sophie
Sarah , I am glad you have found us here as I think it is a more relevant site for you and I am sure you will find all the lovely ladies on here a great source of advice and support . Once you have further information from your onc next week about your intended treatment , you will be able to find out a lot more from the ladies on here , who are also going through it and are making progress. There are many options / treatments for bone mets . I had a right mastectomy Nov 2017 and right axillary clearance (16 out of 18 nodes were positive ) and like yours , my breast cancer had travelled to the bones, and after 20 months of treatment ( ibrance and Letrozole tablets) I am stable . Take care x
I had primary breast cancer 8 years ago. A year ago I was diagnosed with bone mets. I have been on the Letrozol and Ibrance combo for a year. My last two scans showed no evidence of cancer. It is scary at first when you don’t have all the information. They will biopsy your cancer before they decide on your treatment. The nodes on the side of your collar bone are a good deal actually because they can be biopsied so much easier than bones. I had only one that was not in my bones, a node under my arm so that was what was biopsied. It is also easier for the oncologist to see how your body is reacting to the medications because those nodes can be measured and bone metastasizes cannot. So if you haven’t had a biopsy done, they will do that before deciding your treatment. Waiting for all the information seems endless! Hang in there!
Thank you x
Dear Sarah
Sorry you have to join us on MBC forum but you will find a wonderful bunch of inspiring, non-judgmental and sincere woman who provide both sound advice and caring support! I could not have cope over the past few months without them!
I might be totally off course here with my response below so apologies if this is not what you were after...
I don't think I will ever forgot that split second when my surgeon dropped the bombshell: after 2 months of being diagnosed as de nuovo stage 3 and what felt like hundreds of different tests, here it was the big ugly second and final diagnosis: the cancer has spread to the bones... It was just like in a movie, the surgeon was talking but my brain was not processing, all I could hear was " surgery is no longer an option" and all I could think of was my those stupid life expectancy figures I had read when I was first diagnosed: Stage 3 was a hard battle, stage 4 was a death sentence... I was attending the meeting on my own ( it has been scheduled to only discuss masectomy's next steps) and tears ( the first ones since the nightmare has started a few weeks before) just kept coming...I walked out totally numb... Luckily they managed to get me an appointment at the hospital within 2 days...I have to give it to them , that first appointment at the Royal Marsden in Sutton was exactly what the Dr had ordered ( excuse the pun 😉)... They took the time to explain diagnosis, describe treatments, answer questions, alleviate fears and more generally demystify the condition... As they helpfully put it , it needs to be considered as a chronic illness, but one that had a lot of scientific research attention over the past 50 years and as a result comes with a battery of available treatments... Some will work , some won't but every week, month, every year they do buys time for those clever scientists to add more to the list ....
Now don't get me wrong , there are times when I feel pretty down , the balance between positivism and realism is a tricky one to get right, the occasional cloud over my head that makes me feel I am no longer in control of my life is one I could do without , the cripping uncertainty around which part of my kids' future I will or will not be involved in are one that remains painful at times. However, having said that , there is a lot of strength to be taken from the cards we have been dealt, there is no certainty about what will happen and more importantly when it will happen ( some people on this site have had MBC for years and coping very well !) so making the most of what we have is a good helpful reminder this disease can give us... Life is precious , time with loved one invaluable so making the most of it... My practical life has changed very little since my diagnosis, I still work full time and try my best to be a considerate and loving mum to my 3 kids, wife to my husband of 25 years ( I was 18 when we met!) ,and a good friend... I get tired but was lucky to have very little side effect from my last 2 treatments ...
From my experience friends and family will struggle originally with a Stage 4 sentence: in their world you are either going to beat this thing or die tomorrow... The various shade of grey in between is hard to comprehend and adapt to but they will get there!
I have not covered my treatment history but you find it in my profile. If you have any question on any of it just asked!
Logistically I attend hospital every 4 weeks for check up ( blood test) , treatment ( zometa infusion originally every 4 weeks now every 3 months, zoladex implant ( to put me in menopause)) and consultation with oncologist , every 3 cycles ( 12 weeks) I get a follow up PET/ CT to check for disease progression and review treatment accordingly.
If you are London based and seen at the Marsden I am happy to go through their processes with you , it takes a bit of getting used to ...
The drug of choice for first line of treatment for ER + HER- MBC is Ibrance and Letrozole, some have been on it for years but you are better off waiting until you have seen oncologist before your start "googgling" everything...😉
And last , but not least, reach out to this site for help when you have questions, want to celebrate good test result or commiserate bad ones. I found it to be very therapeutic.
Wishing you good luck for your appointment on Wednesday. Keep us posted.
Hi Marie,
Very well put! I agree that life changes and it just seems like it is not really happening when you first hear that you have metastatic breast cancer. I was so positive that I had caught it early that I went to my initial appointments (breast exam, mammogram, ultrasound and first biopsy) on my own as I didn't want to be a bother to my husband or worry him unnecessarily. Then as I lay on the table after my ultrasound I looked over and saw a black oval shaped mass on the screen and the doctor leaned over me and said that there was a strong possibility it was breast cancer. He then did the breast biopsy and when I met my oncologist her first words to me were: "it's not good news." I was running late to meet her, as I was also being investigated by gynaecology at the time (all good there), so I was more concerned about creating a good impression on our first meeting, but she didn't mind I was late.
I don't know about you, but for me the worst thing about having cancer is the waiting. It hasn't been the tests, procedures or treatment (although they are not pleasant, they do serve a purpose). It is waiting for test results or waiting to see what course of action or treatment will be taken. Once I started going with treatment I got used to a new routine and I now draw a lot of comfort from that, knowing when I will be taking my medication, infusions, blood tests, CT scans and so on. Being under close observation is also reassuring. I am sure that once you finish treatment you must feel like you have been abandoned. That must be so hard, but for us the care and attention is ongoing so that whatever comes along can be quickly picked up and treated.
Sophie
Thank you! X
Thank you x
So sorry for your results but there are so many treatments that I'm sure your onc has a plan.
Initially the dx is so shocking! We have all been there. But we are all trying to come to grips with it.
You have your family's support and love.
That will give you strength as will the women on this site. We are here for each other!
Hi Sarah
Sorry you are joining us here. It is horribly scarey and brain numbing when you are first told about having bone Mets. It took me more than a year to realize I may live- I had myself dead and buried.
This forum has helped keep whatever sanity I have left. It’s 3 years now since I have been stage 4 with bone and lung Mets. It is a roller coaster ride and takes time to adjust. Some of us do well with certain drugs; some don’t.
No matter what, you will find solace here. Through ups, downs, turn around, this a great group of warm, knowing, caring sister warriors. Someone on here will answer questions, etc. but you are at the start right now. You have to get a lot of information first- try to have someone with you- I blanked
Out after few words so I had back ups in the beginning.
We all know the anxiety, dread, sadness,-too many emotions raw when we found out. Time will balance it out. One step at a time. Sending 🙏🏻🙏🏻Hugs and strength
♥️Frances
Thank you!! X
Oh, Sarah, I am so sorry that you have this to deal with, that being a plural "you" that includes your family and all those who love you! But let me tell you a couple of things that may help! I was where you are in March, 2004! Yes, over 15 years ago. I never had an early bc, bone mets from the get go. If you saw me out and about, you might notice that my gait is a tad "off" but otherwise I look like any other woman in our 70s. Another thing--bone mets do not generally kill us! There are now bone meds, given by injection or IV depending on the med, that strengthen our bones and help bone mets heal. But if we have to have metastatic breast cancer, bones are the best place to have the mets, crazy as that sounds! And they have never caused me pain. My gait issues are from a badly broken ankle from a fall on the ice several years ago. One thing I always suggest is seeing an oncologist who treats only breast cancer at least for a second opinion. If you are in the US, the top tier of cancer centers are the Comprehensive Cancer Centers and there is a list of those in the "useful resources" topic on the home page for this on line group! My own onc suggested that to me right after initial staging (all the tests we have at first that show where the cancer has spread to), and then again a couple of months ago, after my long time oncologist retired. Both times it was hugely reassuring! For me, the things that helped me the most after getting this diagnosis were time, learning what I could, meeting other women with mbc, both on line and in person at an mbc support group. Again in the US, there are several bc organizations that have good annual conferences. My favorite is the Metastatic BC Network. I've also been to conferences put on by the National BC Coalition (meets in Washington DC and includes a day of lobbying Congress for funding for bc research) and the biggest oncologist focused conference in the US, the San Antonio BC Symposium. The MBCN conference is the only one of those that focuses just on metastatic disease and it is short enough to be more easily managed for anyone who is a bit tired. They also always ask those who have been living 5, 10, 15, even 30 years to stand up. Yes, one time there was a woman there who had been living with mbc for 30 years! I've heard of several 20 year survivors, too. Living with mbc, having treatment all that time, and still being alive and able to enjoy at least some parts of life! I do get tired easily, but I still do all the grocery shopping, most of the laundry, and most of the pet care for my husband and me! I think many, probably most of us find the first year to be the hardest emotionally, with a bit of flexibility about that time. It's a huge kick in the gut to get this diagnosis. A friend of mine once described living with mbc as being like riding a rollercoaster blind-folded. There is some truth to that, though personally I would be much more anxious on a roller coaster than I am now about living with this crazy lousy rotten damn cancer! Welcome to the club! I'm sorry you need us but glad you found us!
Thank you again for your encouragement. I have been in the MBC boat for a little over a year and these messages have really helped me to realize I can cope with this. I am feeling very well now with a slight bit of lung tightness that happens from time to time. I am living a full life again and it feels great!
Awh ladies thank you all so much for responding. It has been such a comfort to know that I’m not on my own and there are ways of living with this. I’ll update you weds once I’ve seen my oncologist.
❤️
Thank you! X
Hi Sarah!
3 years with bone mets! And planning my second Disney vacation since diagnosis this October...good luck! U got this! 😀
Omg that’s amazing!!!! Have a great time x
Hi Sarah
Sorry to hear your diagnosis. And welcome to this site.
I was diagnosed in April this year. It took a good 2 months of strange emotions to settle.
I was diagnosed by a respiratory consultant, which was very gloomy.
My first appointment with the Oncologist was completely different. Very positive experience, saying we are treated as a chronic condition, and living as normal as possible.
I have told only a few people the full facts. The rest I don’t want to put them through the worry. They will all think I am going to drop down dead!!!
I am working my normal hours, and exercising more. Physically I am better since starting on the treatment.
You have a scary time ahead, but you will settle. The ladies on here are amazing and a great help.
Speak soon 🙂 Clare
Thanks Clare x
I know it is scary to have new symptoms but try not to overreact. I have bone mets too and on my last scan, they had stabilized. I got on Metformin that my primary physician gave me after I asked him. I started taking it on June 28th and can't help but conclude that may have stabilized them. I have read so many positive reports about Metformin, but it seems that doctors don't want to give it any credit. Wishing you well!
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