Lytic lesions on hip after breast cancer

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Last year I had a mastectomy and lymph node clearance following the discovery of breast cancer. After complaining of hip pain, I had an x-ray and I've just been told that I have suspected lytic lesions on the hip and pubic bone. I'm now waiting for an MRI to investigate further. I'm petrified because anything I can find about this online is not very promising. I have 2 Teenage girls who lost their father to cancer last year and now I'm worried I won't be here much longer either. Does anyone have any experience of treatment and prognosis with lytic lesions?

Nanny apple over 1 year ago

Hi,

I'm so sorry to hear about the rough time you and your girls are going through.

Obviously, until you have your MRI you won't have a diagnosis or a plan. I don't know if you have goggled ' lytic' lesions? Lytic lesions refer to areas of bone destruction that result in holes. I've copied and pasted that. I absolutely get that the worst thing for you is the not knowing. You will have been through the same waiting game maybe after your initial diagnosis. It is the worst thing and however prepared you are, you are never really prepared. When you read 'on line' about what it could be, it is a scary read. I will share with you my story to try and give you some reassurance.

I had breast cancer in 2017, a simple lumpectomy and 3 weeks radiotherapy. In 2021 I developed pain in my leg. MRI scan showed lytic lesions I was diagnosed with bone cancer at that time. Hips, right femur, all my spine, ribs, skull. ( not brain) and right humerus. My oncologist told me it's very common in the skull.

I think treatment around the country varies and also from oncologist to oncologist. The treatment I have been receiving has so far been very effective and I lead a mostly normal life. After two targeted doses of radiotherapy to my cervical spine and my lower spine and a steroid injection into my spine I have very little pain, and I don't take pain killers. My initial treatment was a immunotherapy drug.

I don't want to bog you down with too much at this point. Probably best to wait until you know what is going on. Be reassured there are absolutely loads of different treatments available. My oncologist has always said if a particular treatment doesn't work, it gets changed.

If you would like more info re my story. I'm happy to share. In the meantime, I hope you don't have to wait too long for your MRI, so if you do need further treatment, you can be getting on with it.

Best wishes

Yvonne

Flowerpower over 1 year ago in reply to Nanny apple

Hi Yvonne

Thanks for getting back to me. I have googled it and it all sounds a bit bleak (incurable, poor life expectancy, pain etc) but as you say it all depends on what they find in the MRI. I know it's a bit early to say but I suppose I am mostly worried about the girls and whether I need to be making plans for a future without me. I would really appreciate it if you were generous enough to share more of your experience with me.

Best wishes Kariann

Nanny apple over 1 year ago in reply to Flowerpower

Hi Kariann,

I feel your anxiety. I'm sure you are worried about the future for you all. I'm happy to share with you my journey and you will see how when one treatment stops working, another can be started.
However, before I bore you with my story, do you know whether your initial breast lesion was oestrogen positive or oestrogen negative? Mine was oestrogen positive so my treatment reflects that.
If yours was oestrogen negative, I'm not sure what the treatment plan for you would be.
Let me know and I'll send you my war and peace version
Yvonne

Flowerpower over 1 year ago in reply to Nanny apple

Hi Yvonne

Thanks so much for getting back to me. I don't mean to press you for your story and will totally understand if you don't want to share.

Mine was ER and PR positive but HER2 negative and 3 of 13 nodes removed were also positive. I know that everyone is different and understand that my experience may turn out to be very different from yours especially as i don't have much to go on at the moment. I might just find a bit of reassurance hearing from you while I wait for more information from the MRI etc. I was really strong throughout my breast cancer journey despite many infections etc. I do believe that a positive outlook really does help, but I have to admit this latest discovery has shaken me badly and I'm struggling to put on a brave face for my family and friends. Obviously I won't be telling the children unless I have to as they've already been through enough and I don't want to worry people too much at this stage either as it's not fair on them with so little to go on. Google is useful but there's a lot of information and data which I know is no real use to me without more info about exactly what I'm dealing with.

Thanks again.

Kariann

Nanny apple over 1 year ago in reply to Flowerpower

Hi Kariann,

I'm absolutely happy to share my journey with you, especially as I know our breast cancers were both oestrogen positive. I warned you it is a long story. Get a coffee and put your feet up!!
So, 2017, simple breast lump, 3 weeks radiotherapy and 5 years anastrozole. Anastrozole is a protein inhibitor. Basically, it is taken daily to stop the protein feeding the tumour . As you were oestrogen positive, you are maybe taking something similar. ( tamoxifen is another alternative)
After 4 years I started getting aches, but put it down to being busy, working and selling and moving house.....and lockdown. I was a key worker. I eventually went to my gp as the pain in my right thigh was causing me to limp. I was referred to a physio who suggested an MRI scan after noticing one of my blood tests was raised. ( alkaline phosphate) . The MRI detected metastases in my bones. I was referred to the oncologist where the treatment plan was put in place.
I was taken off anastrozole ( obviously wasn't working), and put onto another drug called palbociclib, which is an immunotherapy tablet. At the time of my diagnosis i was also given a short course of a steroids. ( cricky, that affects your ability to sleep). I also commenced a monthly infusion of a bone building drug called zometa which helps re build the areas of bone that have been damaged by the tumours. I had three targeted doses of radiotherapy. (cervical spine, sacral area and right hip). I started monthly injections into my bum which was a different type of protein inhibitor. (When I first started this new regime I was given the injections 2 weekly for a few weeks. )
The first few weeks of treatment I did feel quite fatigued as I had a lot of new medications to deal with, plus the steroids.
By July 2021 my regime was more settled:
4 weekly zometa infusion,
2 protein inhibitor injections at the same time and
daily immunotherapy, palbociclib. (Also adcal which builds up calcium levels.) I had monthly blood tests to make sure kidneys and liver are ok, amongst other things.
I had regular ctscans to check progress and I was seen by an orthopedic surgeon to make sure my right hip was not in danger of fracturing. All was good there.
So, I continued with this regime for about 18 months. I worked all the way through, (except at the start when I was bombarded), after 6 weeks I felt stronger.
One of the blood tests I have every month is called ca153. This is a tumour marker to measure the amount of protein. The result should be below 23. Once I started the immunotherapy, my tumour markers went down to 19. ( started at about 245) . So it was all working.
This blood test, Ca153. keeps me sane because if it starts to increase it could be a sign the treatment is not working. This has just happened to me. So last August. my ca153 started to go up and by November 2022 it was up to 98. My liver function blood test was also abnormal. A ct scan showed I had some small lesions on my my liver. So, in January 2023 I commenced chemotherapy in tablet form. The bum injections stopped ( wasn't sorry about that) and palbociclib was stopped, but I still have the bone building infusion, zometa and Adcal.
So since January I've been on capecitabine. The regime is 2 weeks of twice daily tablets, and one week off before i start again. I have blood tests every 3 weeks now and my tumour markers are down to 16 so appears to be working. I tolerate it really well and don't have any major problems, except very hot feet at times . I feel quite well and I look really well. I sometimes think people must think I'm making it up! I don't have any chronic pain, and i don't take any pain killers. However, I did take early retirement in January as I found the increased hospital appointments difficult juggling around work. ( I'm 63).
I had a ctscan in February and it did show a bit of an increase in liver lesions, but I was reassured that it can be as a response to new treatment. A further ctscan in May showed some improvement. I'm having another ctscan next week for further reassurance. I think the worst thing is the rollercoaster of events. I don't feel I can make plans way ahead because I don't know if my treatment will change again. However, it has become a way of life and I am soooo grateful for the care I have from my oncologist, the Macmillan service, breast care nurses, my gp and my family.
I think you are right not to worry your girls with it just yet. Wait until you have got your MRI results. It is really difficult for you trying to keep positive and cheerful with all this hanging over you. Once you know what is happening and you can share with your family, hopefully the positive attitude you had with the breast cancer will return. If you ever want a rant, you can rant to me!!
Like you, I googled bone mets and it doesn't fill you with much hope. However, be reassured, there are new treatments coming out all the time and as my oncologist says...." when this one stops working, there is always another treatment to try".
I could go on forever, but don't want to bog you down anymore. I have everything crossed for you and I hope you get your MRI scan soon. The waiting is the worst. Please keep me posted and if you have any other questions, I'll be happy to try and answer them. Thinking of you
Yvonne

Sent from Outlook for Android

MandaPanda over 1 year ago

Hi Flowerpower,

Sounds like your in a similar place to me, Diagnosed with breast cancer last December, mastectomy in March. Chemotherapy postponed for a CTPet scan which yielded secondary bone cancer mets in my spine, sacrum and iliac bones. A rollercoaster year.

Ive started on targeted therapy tablets daily for a 3 week cycle, then a week off and repeat. Once a month bone support jab,and daily oestrogen blocker tabs as my breast cancer was oestrogen positive.. Also calcium tabs for bone support

I'm at the end of my second cycle of meds now and feeling very well generally, bit tired .

Hope the results of your MRI have given you some good news.

I have a question (for you and anyone else that reads this) is your skin super sensitive?

I have pliazon plus cream to help with blistered itchy skin on my chest which keeps a lid on it, but doesn't make it go completely.

Do you use any special toiletries or just regular supermarket soaps/bodywashes?

Christopher J 10 months ago in reply to Nanny apple

Hello Yvonne, my brother has many lectic lesions down his spine from Multiple Myeloma, I am trying to understand if the bone has any ability to heal, some say yes most say no, was hoping to get some anecdotal information.

Thanks Chris.

Nanny apple 10 months ago in reply to Christopher J

Hi Chris,

Firstly, sorry to hear about your brother. I can see how it is difficult to find the answers to your questions whether bones repair in time following diagnosis. My disease management is different to your brother as I have bone cancer as a secondary to breast cancer. I know my bones will not heal, however, I have an infusion of something called zometa which is a bone strengthening medication. It comes under the heading of bisphosphonate, of which there are several different treatments. Your brother may be receiving this treatment. Is he able to tell you what he is having? Could be zometa, or demusumab or may be other brands. Be assured that although his bones may not repair, this treatment does give the bones some protection.

If there is any questions I'm happy to answer.

Best wishes to you and your family

Yvonne

Christopher J 10 months ago in reply to Nanny apple

Thank you for the reply Yvonne,

Well that is not too bad then, if what bone Matt has got remains strong that is not a bad outcome, just a pity the damn bone does not heal back to normal that would be better.

Hope all goes well with you Yvonne.

Regards Chris.

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Lytic lesions on hip after breast cancer