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.
Hi had appointment with oncologist today and my bone mets are in my skull, ribs, spine, arms and hips as well as my liver. They are going to start me on 6 sessions of docetaxel (taxotere) and also trastuzumab (herceptin) and also pertuzumab (perjeta). Said the herceptin and perjeta will carry on after the chemo finishes. Also have to take calcium tablets to strengthen bones.
im going to lose my hair again which I'm gutted about but I'm sure I will get used to it again.
i had 3 sessions of taxotere last time and remember how awful it was.
looking forward to getting advice from you guys xx
I just wanted to add a message of support as I know what I was like when I was waiting to find out my treatment plan for secondaries, I kept checking the forum to see if there was any information I could use or would help. Well that was 11 years ago (yesterday in fact - a lousy April Fools joke!).
I had my diagnosis of bone mets in 2008 and a further liver mets diagnosis in 2013. I have been on various treatments since then, some more invasive than others. I am also hormone positive so was on Tamoxifen after my primary and my secondaries showed up whilst I was still taking it. Other hormonal treatments work in different ways to Tamoxifen so it is still possible to have those even though Tamoxifen is no longer effective. Depending on what your scan show your oncologist will recommend the right treatment for you. We are all different and some of us have different treatments at different times, there doesn’t always seem to be a set path to take. I hope after tomorrow’s appointment you have some clear answers nd know what treatment you will be on. Do come back nd ask any questions, someone is bound to be able to help. All the terminology is difficult to understand at first so, again, ask us any questions if some things aren’t clear.
Hi ladies. Wishing you both well as you wait for results or treatment plans to kick on. I have been dealing with bone lung and liver mets for a few years now and I just want you to know that it's very doable.
Best of luck Pxx
Sorry I don't know much about bone and liver mets. I have lung mets. I don't know how long it will take treatment to kick in and help. If you need to address the pain before your appointment give them a call.Normal treatment is either hormonal treatment or chemo. Then they usually give you a bone strengthener. Sometimes some radiation. Welcome and good luck. FF
Hi Ellie, my heart goes out to you, I have a bone scan tomorrow and am terrified I get the same results. I have no idea how to help you feel better but just wanted to let you know your not alone. Big hugs xxx
i was originally diagnosed in 2015, had mastectomy and full node clearance. I've just been told I have secondary in bones and liver and I'm gutted, don't know how to deal with it. I have app this week with oncologist to find out what treatment they are going to offer me. I take tamoxifen already and have done since I was first diagnosed.
can't believe how painful my bones are but it's the feeling of pressure under my ribs that's worst which I assume is my liver.
i was a member of the forums when first diagnosed and it was good to have people in the same boat and give support.
We Hi all and thanks for the welcome. My first line treatment is letrozole, abemaciclib (which at some point I will learn to spell without having to look it up!) and Denosumab. Started Friday, now playing the waiting game. It’s so hard knowing you have no control on whether you respond well or not.
but still feeling ok so far. I am back at work and still doing all my usual hobbies. Tired, but 2 weeks of terrible sleep don’t help there! Hoping that will improve a bit now I have started treatment.
i hope you are all doing as well as can be expected, and those with children are able to have a special Mother’s Day.
Thanks Bon! I'm OK. Just tired of health things! Every time I think I'm through issues and might also have finances headed in the right direction another thing pops up plus more appointments. Yesterday was my day off work and I told myself I wasn't handling anything medical or this weekend either! FF
Hi Kess, welcome to the forum, You will find lots of advice/support and also a bit of a giggle sometimes too!!
You will feel a lot more in control once you have a treatment plan in place, good luck, keep us posted.
hugs Janette xx
Kess, Welcome! I hope you find some support and comfort here. It is wonderful to have a place to vent where you are truly understood and celebrate when you have good results. Once you get your Plan of Action "POA" you will start to feel more in control and able to start to move forward. I've had mets to the lungs for 13 years. I live in the states, Pennsylvania. About an hour west of Philadelphia. Let us know what they have decided for you. Good luck. FF
Welcome to the thread, kess. You will certainly find support and info here. I am sure things will improve for you once you have your treatment plan tomorrow. And I hope your onc will take time to discuss it all. Take your questions, whatever they are! Use any BC nurses or Macmillan nurses you have at your unit. The onc will have talked about you at a group meeting to arrive at the best way forward. Do come to these threads if you have questions about the chemo, etc. There should be threads specific to your treatment, but this thread has visitors with lots of experience. Don’t be afraid to ask anything, and do express how you feel too. It takes time to adjust. You will.
good luck for tomorrow. Do you have someone to go with you? Give them a pad of paper and a pencil! I always take one of my wonderful friends. They often ask questions, or ask for spellings! We usually go over it all afterwards.
Thanks for your hello, ff, and again for reviving the bones thread. I always thought the ‘bones’ title didn’t eventually apply as it used to be a general place for anyone to join in, for any reason! Of course bones are the most popular destination for BC, but there have always been visitors who are bones free. All welcome! For a moan, a laugh, or a chat, or advice or support. Sharing so important. Lots are regular readers.
i started with bone mets, ff, but a liver spot grew and spotted in July 17. I went to herceptin because of one HER2 biopsy, which didn’t work, so was referred for ablation. Long story, which I finally described on the separate ablation thread.........dear Nicky a visitor there and always so informative and supportive. Anyway an ultrasound in a&e where I went for liver pain post ablation, showed hydronephrosis...........L kidney enlarged. Obvious on a ct but never mentioned before, although subsequently onc said he could see it on earlier cts. Hm. I was given the stent while in a& e. I thought they were short tubes like an artery stent. No. They are long tubes with a curl at each end. One curl in kidney, one in bladder. To drain. Enlarged kidney means urine backing up. I didn’t know I had it for 2 months, but it has since become increasingly uncomfortable, and painful, at the ureter/exit end. It must have moved. I am having it replaced or removed.........done under x Ray.........next Tuesday by a lovely consultant urologist. He doesn’t like leaving them more than 3 months, although some leave them for 6! Hoping he will see improvement...........apparently kidney function/bloods have improved a lot.............and remove it. I have been drinking loads so that might have helped. Never before thought about my fluid intake! Hope that kidney function improvement will persuade him to remove it, at least for a while. I’ll be waving my flag!
Sorry to ramble, but just sharing info. If I hadn’t had the US in a&e I wouldn’t know about the hydronephrosis. Zero symptoms. Which surprised them. Kidney function ok but getting low. R kidney seemed fine & doing all the work. A later pet scan lit up the lymph nodes by L kidney, squeezing the urethra. What a strange journey, and what a learning curve! I can’t comment on your situation ff, but I am learning that ct scans don’t show everything, and they need careful interpretation. On the other hand they are one of several tools.
All the the best with your root canal, ff. if there is no actual tooth removal it will be ok. Crowns are fine too. And fingers crossed with your other ‘symptom’. We continue to be ordinary human beings and not everything is related to our dx. I hope it passes. I have had a sore mouth.......top palate.....for a few days and assumed it was cape, but with bonjela for a few days it is gone this morning! Might have happened anyway!
take care. No sun here in buckinghamshire this morning. Where has spring gone? Love to all. A message from dear Carolyn on the cape thread today! Am off to say hi to her. She’s in the garden!