WOW Mel, I think I would be changing oncs plus requesting copies of everything!! I could not deal with that onc for years. FF
Thank you Pea, I’m in Manchester and am lucky enough to under The Christie hospital, which also has a Maggies centre, I might make some enquires about visiting Maggies and may get some help/info from there.
I’m in Gloucestershire trust - Cheltenham is the main oncology unit.
They are great overall and we are lucky to have a Maggie’s here too.
I was reluctant to change onc at first but I was an emotional mess after each appt and was reassured by BCN and all NHS staff that sometimes the “fit isn’t right”. I haven’t looked back since. Try and talk to others about the other oncs in your area and get recommendations. Hope you get sorted xxx
Hi Pea, you get great care from your team (after a rocky start) it makes living with this disease a lot easier. I’m seriously considering changing my onc, I’ve been threatening to do so for months but scared to it in case I regret it, I’ve been with the same onc since secondary dx 5 years ago and it has got quite strained sometimes. She can be very nonchalant and I’m made to feel like I’m mithering when I want answers, I do have a bcn but she is terrible at returning calls etc, basically I feel like everything is a battle sometimes.
Do you mind me asking what area/trust you are under?
Hugs Janette x
We have a right to see scans, scan reports, biopsy reports, blood tests results...you can ask for as little or as much as you want, and if you get them and don’t understand them, you can ask them to explain what they mean.
tumour markers are something some oncs use more than others, but not necessarily conclusive. Mine were all normal even though I have cancer in at least 2 places in my bones.
i hope you get the information you want.
My lesion didn’t disappear- it got smaller after chemo. They measured it from PET ct scan. I had an onco who didn’t communicate clearly at all so I saw my breast care nurse about it. I was an emotional mess - I think I went through a whole box of tissues when I was in with her!! She printed off all my scan reports and letters to GP for me. We went through them together. She also arranged for me to change onco. New onc much better- more positive. I was lucky to have a BCN due to the fact it was all around the time of my initial dx that they found the bone met. However in our NHS trust we now have a secondary breast care nurse based in oncology. She’s really great and will help with any issues. I’ve also found the Breast Cancer Care arranged secondary BC meetings in my area really helpful. We meet at Maggie’s once a month and the secondary BCN is always there. It’s also great to talk to people in the same situation and inspirational for me,being dx last year, to meet ladies who were dx with secondary years ago and living life to the fullest. We recently had a presentation about scans as most ladies wanted to see what they were like so could visualise what onc was talking about. We are asked what topics we would like to see covered. Are there any meetings in your area? Check the BCC website. I would also find out if there is a secondary BCN and contact her. She can ask the questions on your behalf to the relevant medical staff. Hope you get some help - it’s hard emotionally and the more positive and helpful advice you can get the more you can cope emotionally. That’s what I found anyway!! Xxxx
The lesion in your sternum had shrunk. Does it mean it disappeared from the scan? My previous onco used 'disappeared' to describe my 2 lesions status in abdominal lining but my current onco used 'shrunk'. Today see my onco, seems he has no intention to show me the radiologist's comment for my last CT scan. He immediately covered it after glancing the report. Anyway, the next CT scan is coming, this time must request for it.
My CA15-3 tumor markers dropped from 23 before chemo to 12 after 8 cycles of taxol. I said the marker had been dropped to 0 when primary BC diagnosis but still recurrence. He said even 1 cancer can .....
I asked would I have regular CT scans onward like 3 monthly. He said No...only when necessary...when tumor marker raised or when there is a symptom....otherwise all the contrast in my body
I requested ultrasound for my liver lesion. He said NO...the lesion can be cyst...if it shrunk with chemo then it is cancer...but it has been there since 2011.
I requested for a bone scan. He said NO..it takes 6 months for the bone to heal...for the tissue to grow...finally he checked out my last bone scan was before chemo which was 7 months ago.
I asked when will I start Letrozole. He said so sorry. He forgot.....
All NOs 8-( 8-( 8-(
He told me my ECHO is 61%...and mumbling to say my heart is good...LOL oh man, was 72% before chemo.
Take care, xxxxx MeMel
We’re all entitled to see the scan picture and the written report but I think a lot of ladies don’t want the gory details (as has been said by Janette) so most oncologists don’t give the info out unless expressly asked to. I must admit I didn’t want to see anything like that for several years, the shock of the diagnosis was bad enough! However I do look at the scan picture and understand it more now plus I will read the report on the screen but have seldom asked for a copy of it. My oncologists have changed over the years and I’ve found once they get to know me more they understood what I want to know. If you request copies of all your letters to your GP you can also get those. I know I do from my cardiologist as I requested them at the time but I don’t for my oncologist, however I have had copies printed off for me by my GP if there’s any particular one I want.
As to waiting for the report I understand there is a general shortage of those radiologists/radiographers who can interpret the results, hence the longer wait. Bloomin’ frustrating for all of us though.
Good luck everyone whether you’re a newbie or an old hand, we’re all in this together.
I also saw my bone scan last year, she asked me if i would like to see it, I was a bit apprehensive but actually glad I looked at it, I’ve never really wanted to know all the gory details (don’t get copies of onc reports) but did actually find looking at the scan useful and less scary than I thought.
Are you in the U.K. If so, they don't tend to give you the info. you've just mentioned. However, my oncologist did show me my last bone scan.....x
Thanks Linda, mine were 33 in January, just had them done again so we’ll see what they are now! See onc in a fortnight for mri and ct results after a long 5 week wait, why do we have to wait so long!!!
Nicky, good luck with results, excellent that they are on it.
hugs Janette x
In answer to your question about tumour markers. I was told upto 30 was within normal range. Yes Letrozole kept mine at 15 for over 3 years. They started to go up in twos over the next year. What they look for is a trend also if they jump up dramatically.
Hope that helps.
Sorry you had to join this elite club.
They are obliged to give you a copy of your scan is you want one. They should be able to download it to a CD. You are also entitle to see it on the screen; some onc don't tend to show them as it scares some ladies but put your foot down and ask to see it.
You also should be receiving a copy of the letter they send to your GP which inform them of your diagnosis/ treatment etc. I don't know which hospital you are in but if you can't get suggest that you contact PALS.
Hi I now qualify to join this group. Have just finished 18 week course of herceptin and letrozole following breast surgery only to be told I now have secondary breast cancer in the bones. They were not specific but it appears to be widespread from what I could see on the scans. Why do they not let you see the scans? And why do they not send a copy of the diagnosis? How can I make decisions without knowing what I am up against? Any advice would be welcome.
Hi all and particularly Nicky,
I was so uplifted to hear, Nicky, you are 11 years on with your secondary diagnosis. This has given me momentum. I'm 2 years in with sternum mets. Been feeling bit sorry for myself recently, which is not like me, so am glad I picked up on this thread. Onwards and upwards as they say. All the best everyone. 😃
In response to the question from silverlining I'm just over 11 years since secondary diagnosis. That was bone mets and I went on to get liver mets about 5 years after.
I'm currently waiting for an MRI appointment to come through as my supposedly 'stable' CT scan has shown up a shadow on the liver that the oncologist hadn't seen (the report hadn't been written by the time of my follow up appointment so it just goes to show that the experts who analyse the reports do know exactly what they are looking for, unlike the less trained eye of the oncologist).
Nicky08 thanks for your response, I remember the mouth ulcers and how unpleasant they are so thanks for the advice I will defo be trying the ice cubes when I go in for mine.
Its really good to hear that the side effects are manageable, I just hope its like last time and flies in. I remember going for my last chemo session and it seemed like only weeks since I started
Im glad you posted a response to me on her. Its nice to know someone who has been through the same treatment and come out the other side. Im not looking forward to the steroids, its the one part of the chemo that I hated.
Please keep commenting on the posts and stay connected, I think its good to have people who understand what your going through.
I was wondering if i could pose a question...no need to reply....
How long is it since your secondary Dx?
I've just hit my 4 year mark so its very much on my mind......
Waves to all,
You are correct - I was diagnosed with stage 4 BC and sternum met pretty much from the outside (2 weeks after primary dx). It showed up as a shadow on mri scan and PET ct confirmed it was cancer.
After 6 cycles (Fec-t) chemo PET ct scan showed lesion in sternum had shrunk. As it was my only met I was referred to surgeons to discuss removing my sternum but after much consideration I decided not to go for op as no evidence it would help prognosis.
PET ct scan in Jan showed lesion was stable and responding to hormone treatment (ER+). Had 15 RT sessions Feb/Mar and seeing onc in May. RT included breast and sternum. It’s a little achy after the RT but not painful. Hopefully will get another PET ct scan May and see if any decrease in lesion.
Hope all goes ok with you and onc gives you some more help/clarity. Take care xxx
I read several articles about this before asking my Onc why I wasn’t having them done and saved this one, don’t know if it’s of any help?
Quick question, does anyone know what the “normal range” is for tumour markers?? I know some oncs don’t use them but mine does, mine went down to 17 when first put on letrozole nearly 4 years ago but they have been slowly creeping up but my onc says they are still within range???
hugs Janette x
Hi, actually how oncologist can tell a drug is no longer working? During 2nd dx, my tumor markers from before chemo to finish chemo all are within normal range. If by scan, I was not told how long there will be a CT scan. 3 monthly or half yearly? Will it be too late? Not sure what cancer can do in that period.
Maybe I am over, I feel that the treatment plan for primary BC is more aggressive then secondary. My philosophy is to put down a spark before it becomes a big fire. In my 1st diagnosis, I had the sequence of treatment surgery, chemo, radiation and then hormone therapy. For 2nd diagnosis, I needed to request having chemo first instead of hormone therapy. My reason is hormone drugs take longer time to effect and not sure whether I would respond to it.
Besides, in my 1st diagnosis, I had multiple CT scans, MRI to my good breast, ultrasound to abdomen though mainly for the lesion in liver. But, this time, so far I only had 1 bone scan which was before chemo and 2 whole body contrast CT scans. No further investigation if any queries like the lesion in liver. Not sure where is the problem, different radiologist different interpretation or oncologist or the guidelines for treatable but not curable (though my previous onco claimed she is curing me), It seemed my previous onco assumed everything is cancer first. Curious if anyone has the feeling.
Failed to post a long one yesterday with an error message "authentication does not match". 8-( .
Thank you for your reply. From the treatment which was mentioned guess you directly go to stage 4. Mine is somewhat different but sure I found the right thread.
I was dx stage 3 primary BC in 2011. ER+/PR+/HER2+, grade 3, 4.5cm tumor in right breast. Had mastectomy, chemo, (EC ??+16 cycles Herceptin), radiation and 8 years on tamoxifen. My last tumor marker after chemo & rad dropped to zero (cancer free). Been told the chance of recurrence was 33% according to statistic at that time. Unfortunately, bingo.
I was dx stage 4 BC with met (or recurrence) in sternum last year. Same to the first time ER+/PR+/HER2+. The latest CT scan BEFORE chemo showed shadow in heart/lung/left breast, lesions in sternum, abdominal lining and liver. I just finished 8 cycles of 3 weekly Taxol/Purjeta/Herceptin. Side effects well manageable. No extra medi besides steroid. Am continuing Purjeta/Herceptin until no longer work. Will start letrozole and denosumab in soon future. LOL. What I am worrying is the standard of my oncologists, not my treatment.
(1) Requested radiation to sternum in cycle 3 based on no heart cancer, the lesion in liver was told by my first oncologist in 2011 is POLYP and should be there since birth or when a kid , the ultrasound following the problematic mammogram revealed no cancer in my left breast. However, my request was refused and the reason was 'cancer everywhere'.
(2) CT scan after cycle 4, was told the scan was a good one and nothing to worry. I responded very well to chemo. Lesions in abdominal lining disappeared and my sternum was healing.
(3) After cycle 5, my previous oncologist left the hospital and changed to my current oncologist who further clarified on the CT scan, the shadow in lung is scar tissue, the lesion in liver is polyp and (?) chemo can cause polyp, lesions in abdominal lining shrunk,(dot size) lesion in sternum was still there but my previous oncologist think it should be cleared by chemo. He again refused my request for radiation saying (?) radiation is not good for bone.
I lost confidence in my current oncologist (actually both 8-)) after he thought my chemo rashes was chicken pox then shringles. But for sure, I will accept to take Letrozol and denosumab as planned by my previous oncologist based on what she told me Tamoxifen no longer worked on me and denosumab is anyway good for bone met patients.
Another round of mammogram, CT scan, ECHO, tumor marker test is coming. Finger crossed, all scans are good. So far, I am quite active and seem healthy. I just took my 4 tires with the heavy metal rims onto my car for replacement. 8-) 8-). Do you mind to update me how is the lesion in your sternum after the chemo.
Morning ladies, lovely day here in Manchester!
Just want to welcome the newbies, sorry you’ve had to join us though, the boney thread has always tended to be quite active but went quite but thanks to F/F it’s up and running again! I’ve been on Letrozole for getting on for 4 years now but I take the branded Femara, I’ve found letrozole to be very doable, you do get achey join and I’ve finally given in and also had to go on a mild antidepressant as it threw me head on into menopause and my head was all over the place. On the whole I feel good and am still working (only 2 days now) and am very grateful to happy “healthy” and still enjoying life!
hugs to all Janette xx
I wondered how you were getting on with the abemaciclib as my Mum picked hers up today and is combining with Letrosole. She's a bit nervous about all the possible side effects and I wondered how you were doing one week on. The nurse led clinic couldn't offer much insight as it's so new but am hearing good things so just wondered if you had an early views.
Hi Mel and Pea! Sounds like you two are in similar situations! It always amazes me where the Mets show up at! Mine is the lungs and originally they said lymph nodes in the chest. Haven't heard a word about the lymph nodes in years. Scans and results the end of this month. We shall see how things are then.
Have a good weekend! FF
Raitch, The hormonal like letrozole are known for aching joints! The hormonal are wiping out your estrogan which makes you like an elderly lady with little hormones. I had had a bad reaction to gemcitibine while away camping. I couldn't even dress myself bc I couldn't breathe. I came home and had to stop treatment and go on O2. They gave me about a month off treatment. I then started a combo of letrozole/pablociclib. My knees started to kill me within a couple days. I ended up on crutches within 2 weeks. I thought I had done something to them. I didn't realize it was the medicine. I will say my knees are worn out and do need replaced according to the MRI I had, but I never had pain like this. I had steroid injections and the gel injections. No relief! After almost 2 years on this combo it quit working. Within one month my knees quit hurting..They do have the normal hurt when going up and down steps, but they aren't screaming at me!
Life is better!
Some of the ladies say that different brands of letrozole make a difference. I don't know if you can get get a different brand to try. I live in the USA and here I got what the pharmacy had. Never got to choose different brands.
Have a good weekend! FF
I’m in the same boat as you- was dx stage 4 BC with bone met in sternum last year. I had FEC-T followed by lumpectomy and node clearance and then radiotherapy. I’m now on anastrozole, zoladex and denosumab and they are talking about starting me on palbo. Overall feeling well and getting fitter and stronger each week. How are you getting on? Phoebe xxx
I had that combo of chemo back in 2013 when it was assumed I was HER2+(long story).
I found the docetaxel bearable, after some severe nerve pain after the first infusion. After that I got the ‘usual’ side effects such as hair loss, tiredness etc. I took the steroids as prescribed and did not suffer any nausea which I was dreading as FECchemo made me feel so nauseous. I did get mouth ulcers but I found by sucking ice cubes during the infusion it stopped them on subsequent cycles. I had learnt this trick from the forum and when it was explained that it was like the cold cap that it freezes the blood vessels I worked out why it worked! I used to freeze a diluted cordial drink into ice cube trays and then put them in a flask to keep cold whilst on the ward. During the infusion I just
opped them in one by one to keep my mouth cold. I found taxotere so much more doable than FEC. The other way to check out SEs is to check the main part of the forum where lots of primary BC ladies will be on it (there’s not so many of us secondary ladies having it at present). I learnt all the top tips about what to expect by checking out the tax/docetaxel threads.
The only difference is, if I can remember correctly, for the first infusion of all of them they tend to give it over 2 session one day after the other so they can assess if you hace any reaction to any of the 3 drugs. You also have to be observed for several hours after the Herceptin infusion to make sure you have no reaction. This is tedious rather than difficult as you will just want to go home!
once you are on the H and P combo it is very straight forward and no noticeable SEs from what I can remember.
I hope that helps and I will also try and find the old thread that was called per Pertuzamab/Perjeta which might be worth posting on or at least reading for some insights.
Good luck and although it’s a pain losing you hair again (I know, I’ve had this twice as well) you are at least getting on with your treatment and dealing with the pesky mets!
They found Mets in hip couple of weeks after my primary diagnosis in late 2015 and I had radiotherapy (Cyberknife). (Also had LD flap and radiotherapy after the chemo). Been on the HerPerZom combo since March 2016. Interesting you mention knees. Mine often feel like they are going to give way but my consultant keeps telling me it's because I'm unfit. (Whilst I've no gym membership I think my fitness level was ok before all this started!) Apparently the joint aches are all unrelated to the treatment or are 'just' the menopause. I find it hard to know what causes different symptoms and feel it is all a bit random.
Mel - I suspect you've come to the right place for buddies!
Hi, can I join this thread? I was dx stage 4 BC with met in sternum in 2018. Posted to this forum several times but haven't made any buddy yet 8-) xxxMelMel
Welcome Raitch! Don't be shy keep joining in! Thanks for reaching out! How long have you had your mets? I work PT, it helps me stay sane! Letrozole was a tough treatment for me. It killed my knees! I hope it's minded to you!
I've been a bit of lurker over the last couple of years and haven't looked for a while (and have never posted!) but just wanted to say hi and reassure you that docetaxel is manageable. I had 6 sessions of that (after a couple of Fecs first before they realised it had spread to my bone). I lost my hair but it came back! I've been on herceptin, perjeta, zometa for nearly three years now (and letrozole after a year or so on tamoxifen). I have the usual itching, aches, pains and moans but I am still here (and working) so don't let the docetaxel get you down. Any advice or help you need then I believe you can private message on here (although I have no idea how!). Don't take the steroids too late in the day or you will never sleep.
Whilst I am here must just say thanks to all of you who post on this thread. I sometimes forget just how much you have all done for me. I really wouldn't have got through this without all your lovely positive posts. I am just not much of a joiner but I have been so grateful that you all post. Now that I have galvanised myself to register you'll probably wish I hadn't bothered.
Welcome to the forum a place no one wants to be.
I just want to send some encouragement. I was diagnosed nearly 10 years firstly with bone mets and breast cancer at same time. Had various treatments over the years . Unfortunately it spread to my liver 2 years ago now. I did manage to carry on working for about 6 years until I reached retirement age.
I can understand how you feel as I felt exactly the same. By chance I discovered this forum which has been supportive to me.
Feel free to ask any questions .
Elliejane, I haven't had taxotere so really can't comment on it. I hope your treatment plan is kind to you. I'm not HER2 + so have no experience with herceptin either. I hear it does well for most. Best widgets! FF
Jayne67 thank you so much for replying to my post, I really hope you have good news after your bone scan please let us know how you get on
Nicky08 thanks for your response. its so encouraging to hear someone who has lived with this for so long, it gives me hope that I too could still be here in 10 years. I have a son aged 12 so it would be so nice to see him grow into a young man.
thank you so much for your support it really does make a difference when life seems so uncertain at the moment.