I am 35 and I was diagnosed earlier this year in May with breast cancer and a month later with secondary breast cancer in my hip. Have been through chemo (tax/fec) and rads and now on pamidronate and tamoxifen
The end of last week i started getting pain in my upper back. On feeling my back my spine feels very bruised and painful. Hubby reckons that i have just jarred it or its a reaction from a 10 hour flight that we had on the wednesday
But what if its not? What if cancer has spread from my hip to my spine
I am so frightened i really don’t know what to think or do -this is moving so much faster than i can cope with at the moment
I am seeing my oncologist on thursday for a check up but she’s quite dismissive when i have had concerns or worries so dont know what to do
Jools
So sorry you have these worries Jools. I think you will just have to be very firm with your oncologist on Thursday and ask for a further xray or even bonescan. I know it is really difficult being firm and assertive when you just feel like crying and crumbling inside - but it seems to be the only way to get what you want. I feel that my whole cancer journey has been a fight - a fight for tests, a fight for further appointments etc. But I am very lucky that I have a tremendously supportive GP. He will send me off for tests (of any type) in between appointments with the oncologist and never ever makes me feel that I am wasting his time. Infact, it was him that spotted my recurrence and also found out (via recent bloodtest) that I had other problems, which would not have shown up.
Very best of luck, Jools, and let’s hope it is just a muscle strain fromt he long flight.
Birgit
Hi jools
During this difficult time please remember you can always call the Breast Cancer Care helpline and talk to someone in confidence about how you are feeling. The staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm. I hope this is of some help to you.
Best wishes
Katie
Hi Jools I was diagnosed with bone mets in 2003. Do you have bloods, tumour markers taken? Or regular scans? Hope the onc is not dismissive this week, you need your pain investigated if only to put your mind at rest. If you did need a change of hormonal treatment there are the aromatase inhibitors. Tamoxifen worked for me for a while but I’ve had my best results from Arimidex. Was wondering if you have Prostap or Zoladex injections to stop your periods as well? I’ve had Prostap since my diagnosis and it’s also enabled me to have the post menopausal aromatase treatments.
Good Luck…and Love…Belinda…x
i’ve not had any bloods or markers taken since the beginning of september which was when i had my last chemo treatment. Been asking and asking when i will be rescanned since then but my oncologist just tells me that she thinks that i need a break from hospital treatment.
I am not on anything to stop my periods just pamidronate and tamoxifen although my periods stopped in August and havent had one since
Pain is getting worse - its ok when i sit still just agonising when i move
Takin my husband with me to oncologist on thursday cos i need support to fight my corner
Jools
Hi again Jools…I have markers taken every 4 weeks, mine have always been very reliable although I know they don’t work for everyone…I would really encourage you to get anything that worries you investigated. It’s much better to nip things in the bud (I think) than to wait and see.
Hi Jools;
Boy do I understand about Oncologists being dismissive. My GP is the one who found my cancer and is still the one that supports me the most. I think it’s because every patient an Onc has has cancer. I’m sure every patient complains of some pain or problem at every visit and it becomes hard to discern when testing is really needed and when it isn’t. I had a met to my hip when dx in 6/2006 but it wasn’t pursued. She finally ordered my scans again in 7/2007 only after my insistence. CT said yes for met and bone didn’t. In the meantime my pain kept getting worse, so I just kept complaining. I sent the nurse regular emails. The Onc got tired of it and moved my scans up to November, which finally confirmed the mets. If you are in that much pain than I agree with Birgit, you have to be very firm with them. And it is good to have your husband with you. My case worker always tells me that I am I own best advocate.
Best of luck Thursday. Keep us posted.
JanetK
Hi Jools,
Hope you had a good time in San Francisco and sorry that you have come back to this pain and the worry that goes with it.
Like belinda I have my blood taken every four weeks and I can only echo what others have said and insist that your pain is investigated and that you have blood tests done. If your oncologist insists you have a break from hospitals then suggest you would benefit more with a break from fear and worry and that you will be happy to be proved wrong. I always take my husband with me as it gives me strength, he remembers the things I want to ask and remembers what the dr’s say when I am thinking “oh my god this all sounds awful…” You know how it is.
Good luck and come back and let us now how you get on.
Angee xxx
Hi Jools
I’m surprised that your hospital don’t take your bloods prior to every pamidronate you have to check that your creatinine levels are okay as mine said this is one of the things that they make sure are within the limits when taking pamidronate. Just shows you that although it’s the NHS in one sense, in another sense the workings within each hospital vary greatly.
I’m also surprised that they don’t do a scan on you if you’re telling them that your pain is getting worse and think it’s a good idea that you’re taking your husband with you. It’s really upsetting when they don’t listen to you.
I have only had two bone scans in the last 3 years (for some reason they don’t seem to do them that often where I live) but I have CT scans every 3 months.
Hope things get sorted out for you soon.
Pinkdove
well saw the oncologist today. She does not feel the need to do blood tests. She also will not consider doing any type of scans till at least the middle of next year
The only thing that she agreed to do (after my husband ended up intervening and insisting)was to see me in a months time if I still have the pain and they will investigate further. So no immediate action but at least something got done
Why do we have to continually fight!
Jools
Jools have you thought about changing your onc? Lots of patients do. I wouldn’t feel secure without my markers taken every month and as Pinkdove has mentioned you’re supposed to have bloods taken regularly when on bisphosphonates. Not everyone has markers taken but if not they seem to have regular scans instead…the middle of next year seems quite a while away. I’m no expert but believe I’ve kept well, so far, because I’m very closely monitored and my bc is kept in check because thanks to tumour markers I (and the docs) can see when a treatment is working and just as importantly when it starts to fail. You shouldn’t have to fight. Take Care…xx
Hi Jools
Belinda’s right - you shouldn’t have to fight and they should be keeping an eye on your creatinine. It’s recognised that pamidronate impacts on renal function (kidneys) and that’s why my oncologist makes sure that I have my blood tests prior to each treatment to make sure that my kidneys aren’t compromised (and they haven’t been for the past 3 years).
Maybe you need to think about asking to change oncologists - not sure whether this is an option for you? I would certainly ask her in a month’s time when you see her why your creatinine isn’t being monitored.
Good luck
Pinkdove