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Secondary breast cancer

8 REPLIES 8
Community Champion

Re: Secondary breast cancer

Hi Marye,

 

Hang in there, you are doing really well. You have faught your corner. I too was quite upset, but didnt complain because I felt too vulnerable. Now you have done your very  best, time to let the anger go a bit, if you can, as you need all your strength to fight this disease. Thank you for sharing....if you find it keeps nagging away at you, do let us know..we are all here for you

 

imoijanxx

 

 

 

Member

Re: Secondary breast cancer

Than you for ur reply just had full body scan, I knew my own body and knew it was more than fractured ribs after my own research but still I had to convince the hospital who finally admitted it was secondary I put in a. Complaint which took no responsibility and became a blame game, I'm staying positive and logging everything again than you x
Community Champion

Re: Secondary breast cancer

Hi Marye, sorry youve had such an uphill struggle...my initial diagnosis was missed and I went away feeling like a hypochondriac, left things for a year, may not have lost a breast if I had persisted....

 

About the ribs, i do have two hairline fractured ribs which funnily enough started hurting a couple of years after my mets diagnosis! I went to the onc with pain and he said, ' we told you you had hairline fractures in your ribs, didnt we?' And of course they hadnt. i am unsure if they are  due to rads, or to bc, but they do hurt if I turn unawares. 

 

Well done for fighting your corner...never feel intimidated, if you mention something and they dont take heed, you can say' please note my concern about my 'xx'  in my notes'.  and you will find they wont dismiss it easily.

it IS your life and they have been trained and are paid to listen to and care for you!

 

i am very lucky, my onc does listen. After I was missed, I did change hospitals tho. But not everyone has that option.

 

do keep us posted,

 

hugs,

.Moijanxx💜💙💜

Member

Re: Secondary breast cancer

Thank you for ur reply great to have support from people who know xx
Member

Re: Secondary breast cancer

Thank you for your reply it helps to know your not the only one I thought I was going mad at first hope you are keeping ok xx
Member

Re: Secondary breast cancer

Hello marye
Many ladies with secondaries have been overlooked with their symptoms and its a case of really fighting and pushing for everything .
I had hip pain for a year ...got dx with sciatica , trapped nerve and arthritus and eventually on being pushy got a ct scan which showed bone Mets to femur, hip, pelvis and spine which were quite " settled in" and so had been there for a long time.
I had a eleven year gap from primary to secondary and I didn't realise then that it could return after so long !!
Carolyn xxx
Member

Re: Secondary breast cancer

hi Marye,

sorry you have had to join us here but welcome. You will find you are not on your own with your gripes!! It seems no one but us grasps the fact that we know our bodies better than anyone. My SBC started as a lump which was misdiagnosed as a sebaceous cyst for 5 months by at least 4 'professionals'. It has now spread to my skin, pleura and bones. I am finding that you have to push for everything (althuogh i have to say my new oncologist acts on whatever i ask for), do my own research etc, etc.

Dont ever feel you are being pushy and never accept an explanation/diagnosis your not certain about. Of course this all adds up to stress we dont want or need but keep needling away until you are happy. With regard to bones it seems that we are all on denosumab, zometa?? or other biophosphates. i have a six weekly injection but most people seem to have it 4 weekly. I'm sure there will be someone along soon who can give you better information than me but in the meantime plese feel free to vent your frustration on us. xx

Highlighted
Member

Re: Secondary breast cancer

Hi Marye123, 

 

I have moved your post to our Treatments and medical issues board to give users more of a chance to respond. 

 

In the meantime you can always call our helpline on 0808 800 6000 who will be able to help answer any questions you have. The opening hours are below.

 

Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm
Saturday, 9am-1pm

 

Best wishes, 

Lizzy 

Member

Secondary breast cancer

I was diagnosed with breast cancer 4 years ago had an op went back to work in 2015 I started to get pain in my rib, I kept visiting hospital they stated I had a fractured rib this went on for months, after doing my own research, I found that most secondary starts usually in the ribs this was not taken seriously and I continued to try and work, eventually the pain became too great, after much more pushing I finally had a bone scan which showed a hot spot, I believed tings would really move forward now cut lng story short it took another six months before I was diagnosed, finally June 2016 I had an op to remove partial rib muscle and tissue, then in September more pain two episodes of a and e due to severe pain , usual have to wait to see oncology another ct scan showing more spots on ribs now waiting full body scan I feel as if I have to fight for every answer and it's very difficult to get the hospital to listen, I feel that when I had the original cancer I was treated fantastically and quicker, now I have to be assertive to the point of pushy, it's stressful enough being in constant pain without, having to push for treatment I wonder has anyone else had this issue. And the best treatments for breast cancer in the bone thanks sorry bit of a rant still processing it all