Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

New diagnosis

razzy
Posted by

Hi

i need to have a rant.

Mine is a long story. Yesterday had had it confirmed that I had lobula breast cancer. No symptoms, lumps etc in breast. MAmmagram did not show anything up. My story started in 2016 my nipple began to sink in my breast with thinking round nipple MAmmagram was clear told to keep an eye on it any problems come back. Fast forward to 2019. Nothing changed felt the same looked the same, no breast lumps, no pain in breast. I hurt my back Nov 2018 thought I had pulled a muscle I have arthritis in lower back so thought it was that dr said sciatica. Still had pain in March so I went back to Dr ask how I went about paying for a MRI. I saw a nurse practitioner who sent me for an X-ray on my back. Also had a MAmmagram in March under the breast screening for over 50's which was normal.. When I went back to nurse for results of X-ray she was more bothered about my raised blood pressure. I asked about X-ray she said it was normal I asked if she was sure she said yes. I then asked if it was just arthritis as the other side of back she said probably. Struggling to breath so they sent me for a chest X-ray which showed slightly enlarged heart so appointKent booked to see cardiologist which is in Nov this year. End of May 2019 had a pain in middle of chest and under left breast in rib area went to hospital could hardly breath ECG and X-ray took again diagnosed with conderentaritis ( un sure if spelling correct) inflammation of cartridge under ribs. Kept going to Dr nurse practitioner every time. End of August still had pain in back but was booked for a M RI had to drive everywhere as I was breathless. I was using a stapler at work then felt as if someone had stabbed me in ribs. Went to see different nurse practitioner who referred me for a CT scan luckily both scans were done on the same day 3rd September. Got a call from Dr they wanted to see me on the 6th Sep to discuss results. News came back cancer in bones. I had to go there and then for another CT scan which showed ribs, back, clavicle, sternum. So after a battery of tests to find primary thought it was cervical, ovarian. As a last check they sent me to the breast clinic who reluctantly did another MAmmagram having had one six months previously. This one did not show anything so consultant had another look at the breasts and my right nipple was slightly red I had knocked it that morning. He decided to do a nipple biopsy but was not concerned about it. Yesturday confirmed cancer. The consultant who gave me the news could not answer my questions, could not get me out of there fast enough he only said I wifi receive an appointment within two weeks to see an oncologist who will answer anything I wanted to know.

i lost my husband 8 years ago to cancer so I was prepared with questions which probably threw him, I think he was expecting me to cry which I did not until I got home.

I did everything right checked breasts for lumps, change in shape, colour texture had checked out the change in nipple with hindsight should have asked for a second opinion, asked for a biopsy but I wrongly trusted the experts, trusted the mammograms. My cancer would not be advanced as it is. I have now got to explain to two children that their mother has advanced cancer. One daughter still has problems after her father passed away I am scared what this will do to her.

Sorry for ranting on

Joanne

Peebee2
Posted by

Oh Razzy or is it Joanne, sure i seen this on original email, but anyway I’m Jo and I’m sending the biggest hug, you must be all over the place in your head and rightly so I was the same... fear for yourself then the fear for your children that was the worst for me, disbelief and anger all rolled together that it’s so hard to digest, how, why... I was just like you, if you read my profile you will see but I have secondary breast cancer in my bones, I was also back and forward to the gp with back pain with nobody waving a flag as if to say maybe it’s back but no 12 months later I found out it was back. I think for you this must be harder because of never previously having it, or so you thought. 

As for now, your the patient so please take a friend with you to see consultant and write down all your questions down as you know how it can become white noise.

Ask for as much help as you can with whatever you may need, get meds arranged if you need any for any pain you might have, the Macmillan nurses were amazing in getting me pain free and I’m doing really well now! Just had a holiday to Turkey and feel amazing!! You have to remember this cancer isn’t curable but all of us on here are living with it and it and can be contained, mine is with oral chemo and it’s ok... wobbly start as most chemo is but I’m doing well and living a full life, o think positive ( i do sometimes have a cry ) but o consider that normal and I do it by myself as I can’t do pity and I hate seeing people get upset because of this sodding dog shit diagnosis... I swear sometimes as well, but for you it’s still new and it’s still feeling raw and it’s gonna feel like that till you have a plan in place regarding oncology,

we are usually here for a chat, so don’t feel alone or isolated just pop on and hopefully someone will answer. 

Big hug, Jo xx 

lily0403
Posted by

Hi Razzy, 

I was also diagnosed with lobular breast cancer and it had spread to my bones before they discovered it.  I had a large lump for years and they said it was fine but i pushed until they did a biopsy and i was right unfortunately.  

My mum had ductual breast cancer and has been cancer free for eight years. My mums cousin lived with breast cancer in the bones for many years (she actually died of something else) my grandmother had breast cancer too but dont know much about hers as there wasnt so much information back then. 

This forum is a great place to rant and rave, laugh or cry. We are all in this together.  Do ask for pain relief,  my doctor says there is no need to live in pain. 

I hope all goes well for you. Let us know how you get on.

Lils x
razzy
Posted by

Hi Jo

it is Joanne. Razzy was the name I used when I first logged on to the site 12 years ago when my late husband was diagnosed.

i am pleased you are doing well. I thought I was a strong person and was dealing with things ok. I have cried all day today. My friend is coming to see the oncologist with me on Monday. I have been told it depends where you live as to the treatment options.

When I asked the nurse about treatments at the breast clinc after been told of diagnosis she said they would not operate. I would get tablets to reduce hormones, and radiotherapy for bones. The pain in back and ribs are only down to a slight niggle. Is this normal?

I was back and forward due to pain in back and ribs. Palliative nurse coming to see me Tuesday. I also can't cope with other people crying it starts me off. I suppose it natural to be up and down. The nearer to Monday it gets the more upset I seem to be getting. Hopefully ok tomorrow I am going to go into work as having Monday off and there are things I need to do.

Joanne x

Joanne

razzy
Posted by

Hi Lils

Thank you for replying

Its Joanne. Razzy was the name I used when I first logged on to the site 12 years ago.

The pain in back and ribs are only down to a slight niggle. Is this normal? This is since the diagnoses on Tuesday been in agony for months.

What I can't understand is why they tell us to check for lumps etc, if when we go with problems they don't do a biopsy straight away. The 3 mammagrams I had were normal. When I asked the question  I was told your cancer does not always show up.

We all trust the experts. My nipple changes has stayed the same for 3 years. How many other women out there are been told their fine and there not. They were not even going to give me another MAmmagram as it was only 6 months since last one. 

Joanne x

Joanne

lily0403
Posted by

I find my pain comes in waves. Some days its really bad and other days its not so bad. With me it depends what im doing. I run a pub and im a hairdresser so im always on my feet so the pain in my sacrum is always worse than the others. Lobular breast cancer doesn't always show up on mammograms so i would suggest asking for a mri instead.  Ive been told mri shows lobular breast cancer much clearer.  Hope ive been some help. X

Lils x
Peebee2
Posted by

Hi Jo, you sound so like me, have you had some time off since your diagnosis? I think when I look back I got told one day and I went back to work the next day and how I held my composure that day I don’t know, I worked in a busy pharmacy so I was occupied all of the time and then all of a sudden I was in the computer and I completely froze for about 2 mins I think the whole thing hit me and it was like I wasn’t there, it was kind an out of body experience and I felt completely numb and then I switched back into normal mode, continued the day and went home. So be aware of that when you go I take some time for you, I didn’t I just tried to stay as normal as I could, but do whatever works for you. I’m not sure where you are in the country but the palliative nurses are just amazing, ask them whatever is on your mind, they can prescribe meds for you and get your pain under control which they did with me and I was back to normal life after two days of them getting my dose right. 

Monday will be a rollercoaster but you will get through it 

Big hug Joanne, I will be thinking of you xx 

razzy
Posted by

Thank you for the reply.

I have been in constant pain since last year with back and ribs since May ( I have pathological fractures in ribs since end of August) and thought it strange pain suddenly stopped. 

Thought breast specialist would request additional tests if they suspected something all they said MAmmagram clear so further tests need to be done

joannex

Joanne

razzy
Posted by

Thank you for the reply.

I'm still working the alternative is sitting at home worrying. Work keeps me sane. I have had plenty of tests over past 4 weeks even managed to go away with my daughters for a girly week. Could not go far in case I needed tests done. Good job as I had a scan and biopsy in middle of week. friends and work colleagues are extremely supportive. I work in the public domain so have to put a brave face on every day but also have an office door I can hide behind if things get bad. No pain at moment and will ask if need anything. I am in Cumbria. I’m off work all day Monday to see oncologist then off Tuesday afternoon to see palliative nurse if I don't feel up to it I will stay off Tuesday morning. I am trying to keep things normal but also I’m aware that I will have times when I can’t go in. My boss is fine with that as long as I let him know. 

Thank you for the support xxx

Joanne