Hi Bonney and welcome to the Cancer Chat forum.

I'm really sorry you feel that you can't talk to your friends and family about this at the moment.

It must be very difficult keeping this to yourself but I'm glad you've joined us as you'll find many of our members have been in this position so will completely understand what you're going through and I'm sure those who have experienced these symptoms will be along when they can to offer their support and share their experiences. 

We'll have our fingers crossed for good news Bonney.

All the best, 

Steph, Cancer Chat Moderator

Hello sorry to bother you but saw your thread and wanted to ask you what was the outcome of your tests. I too had breast cancer nearly 2 yrs ago ( triple negative too).

For the past 5 months I have had abnormal alkaline phosphates. At my last test they also did CA15-3 cancer marker. This was also raised at 36 ( range is 0-26.4).

i have had a bone scan and awaiting a CT of abdomen and chest. I have researched about raised ALP (alkaline phosphates and CA15-3 but not found anyone with similar situations and was wondering what your outcomes were. 

I hope you are keeping well

Hi Chrissy. Thanks for your reply. After many tests and scans I was finally diagnosed with secondary breast cancer in my bones and they also found another lump in same breast. I was devastated with the diagnosis as you can imagine...but...the medication they have for secondary breast cancer is very very successful and now look at it as a chronic illness like diabetes or heart disease. It cant be cured but managed. I'm on letrezole, palbociclib (chemo type tablet with no hair loss or dreadful side affects) and denosumab injection every month. It's still a bit trial and error at the moment as the palbo can cause your immune system to crash so they have reduced the dosage already. Have another appointment next week to check how things going do its lots of blood tests and appointments at the moment but things should settle down soon. I'm still working full time and just think positive. None of us know how long we have but feel very grateful that the new drugs I'm on are so effective. I hope you get to the bottom of your blood tests. It's the unknown that causes so much stress. Good luck and let me know how you get on. I also post and follow others with secondary breast cancer on Breast Cancer now which is also good for support from others in the same unfortunate boat! Xx

Hi Bonney63

thank you for replying so quickly. I didn’t think you would get my request as your thread was from 23rd June. So a big thank you to you. I’m sorry to hear about your diagnosis of stage IV . It must have been awful for you to discover what happened. I hope you now feel less stressed with a diagnosis. I know this may seem a strange thing to say but I think the worry not knowing can be worse. Once the shock has passed you can focus better. Did it take long for you to find out?

I have been having elevated alkaline phosphates since may. Originally they were 228 then went down to 178 at the lowest and are now up again to 208.At my last bloods test I noticed the oncologist also wrote CA15-3 on the blood form. I had never had this before and it came back as 36 ( range I was told is 0-26.4) so this is elevated too. It was only at this result on the 4th Oct did the oncologist decide to send me for a bone scan and I have the CT scan ( abdomen and chest) on Friday 1st Nov. 

I was diagnosed with triple negative breast cancer on 5th dec 2017 so will be coming up to my 2nd year soon. I don’t know if you have heard of triple neg bc but it is an aggressive cancer and there is no targeted treatment for it. Following my mastectomy and implant Xmas 17 I then had chemo (FEC-T and  then I had to have radiotherapy as it had gone to my lymph nodes but they never knew that until I went for results after surgery (Jan 18). 

They decided then that I would then need radio as well as chemo and they decided not do lymph node clearance. Because of the type of cancer and not having the lymph node clearance I have always worried that it would come back and I just want to know now. I am not due to see the oncologist until 6th dec . Just before this appointment I will have bloods repeated  . I’ve noticed this time the oncologist has also put on the form CA15-3 and CEA. 

I dont have any other symptoms really only peripheral neuropathy but that was from chemo before. I have a dull ache at times in my upper back but sometimes I think is it my mind playing tricks on me.

I’m so glad you are on medication to help things. Do you mind me asking which bones have become affected and do you get much pain from it. I think you are amazing working full time. You must have a good employer which helps. I’m afraid mine has little compassion or empathy. It has took me a good 18 months from diagnosis to get back to good health the chemo really knocked me about and during all my treatment they insisted on the 6 weekly sickness reviews even during chemo. I have had to fight for them to allow me to attend my appointments by quoting the discrimination and equalities act! Anyway you take care thank you for replying to me I hope you continue well with your journey and look forward to hearing from you again. 

Regards chrissy

Hi Chrissy. I got an email notification someone had messaged me which is how I picked up your post. It took from march until July to get my diagnosis. The cancer is in my shoulder, spine and pelvis. I had severe pain in my groin and stabbing pains generally all over but strangely enough the pain subsided when I was given vitamin d tablets in March. My oncologist said other patients had mentioned this too but there is no scientific evidence vitamind does help. When my gp discovered I was vitamin d deficient they went down that route first. Knowing my bc history they should have tested me for bone mets at the beginning. It all comes down to cost! I'm being treated in Liverpool. Can I ask where your oncologist is based? It sounds like different hospitals have different approaches to treatment? I'm currently off work as my blood count has crashed again so feeling exhausted. I have a week off from the palbociclib so my body will recover before the next 3 week dose. My employer is very good but my previous employer when I was having chemo was not so accommodating!  I  just think that having been given the all clear 5 years ago, regular blood tests should have been done. No one told me this may return and to watch out for symptoms etc so I went on my merry way thinking I'd been cured! There is a couple of young ladies who have set up Secondary Sisters on Instagram who I also follow. They are trying to raise awareness of secondary cancers. It's not all about the first time diagnosis campaigns we see everywhere. I also get very angry and upset by this "ring the bell" they do when you've finished your treatment. Whilst I've had my monthly injections which has to be done in the chemo ward by a chemo nurse, I've seen this happen and its insensitive as Iots of people wont get to ring the bloody bell! Sorry rant over! I  will keep my fingers crossed for you tomorrow. Whatever the outcome you will get through it! Take care xx

Hi Bonney 63

thanks for your reply.

i was tested for vitamin d by my Gp when I first discovered my alkaline phosphates were abnormal. But that came back ok. The onc then sent me for an ultra sound of my liver and I was told that was ok to. I totally agree with you they should have tested you with your history. Poor management but I feel this journey has been like this. I am a nurse I don’t confess that I know or understand a lot about cancer but I do question a lot of things. For instance I had to fight to get a Hickman line as chemo has ruined my veins. Tomorrow when I have the CT I know it will be difficult to put the contrast in. I had the same problem 2 weeks ago at my bone scan it took 4 attempts. 

You should have still had blood tests after 5 years. It is a cost cutting process as is the concept of not offering yearly scans and only mammograms. I feel very angry with this. I totally agree with you too about the bloody bell! I did ring it as my 13 year old daughter was with me but I didn’t feel any joy as once you have cancer there is a high risk that you can get cancer again. I’m not being pessimistic but real. I attend a hospital in the Dudley area, west mids. I am glad they are doing tests as I feel so they should be. Hospitals do totally different things. I discovered that when I was having treatment as I was on the breast cancer now forum. Treatment varied a lot across different trusts. 

On another note I went to Liverpool recently. I’ve been doing the uni open days with my older daughter. Thought the uni was fab and liked the area. 

I’m glad your employer is good. I bet you will be shocked to hear I work for the NHS. My colleagues are good but management sucks! Also I’m sorry to hear that you weren’t told that your cancer could return . That is just awful and must have been such a shock for you and your family. I hope that your bloods recover quickly. Are you neutropenic at the moment? Also do you have yearly flu jabs too? Obviously, not whilst you are feeling ill. 

I had a quick look at the medication you are on. The palbociclib and letrezole wouldnt work with triple negative bc as it is for hormone receptive cancers. Anyway I better get on . Not long in from work need a shower etc. Been lovely emailing you. I’m pleased I emailed you as I have been searching for information on elevated alkaline phosphates and found there wasn’t a lot out there. I hope this month  will go quick as it will be a long time until I get my results. I just really want to know now. 

Thinking of you, rest and I hope you get a bit better soon,

kind wishes xxx

Hello Bonney63,

was just thinking about you today. Was wondering how you are feeling. Are you still off work. Do hope you are feeling a bit brighter.

regards

chrissy00

Hi Chrissy. Thank you for your message. Im back in work but had to have a week off recently due to my low blood count. I get completely exhausted and just go to bed. Its a bit hit and miss with the palbociclib and how my body is coping. Im hopefully going to reduce my hours from January. Ive recently applied for PIP so if that is accepted then I will definately reduce my hours! How are you doing? How was your scan?

Hi bonney63 

glad to hear you back at work, just hope it’s not too stressful for you. I’ve had bone and ct scan. Bloods done Tuesday had Gp ring me twice as concerned about abnormality. Neutrophils and wbc are low. Neuts 1.5 . ALP has gone up further to 208 and CA15-3 was 35 but CEA was 2 ( normal is 2 I and under. I was told). So just under 2 weeks til I see oncologist. Told gp this and happy to do that rather than see them. But I’m impressed they rung me twice. I’m really tired though.

Been so busy as daughter had op Wednesday so I’m really tired running about  she’s got to go back wed to see surgeon. In cast for few weeks . 

I do hope you get pip I applied when had treatment but got turned down so will keep my fingers crossed for you . You take care don’t do too much xx

hi bonney63

thought I’d let you know what happened yesterday. Saw oncologist who told me bone scan was ok he also mentioned the mammogram I’d had on 5th dec was ok so that was good news.

The bloods ALP had gone up again to 218 and neutrophils, monocytes and leukocytes were below normal range  and CA15-3 was 35 ( was 36 before). 

So I asked him about CT think he’d forgotten about it as there was silence as he read the report. He then said that it showed a 3cm mass underneath my sternum ( breast bone) and there appeared to be a blockage just out side the right kidney where the tube ( ureter) goes to bladder . 

Obviously I was surprised. He said he needs to discuss with MDT but 7 days notice is needed so it won’t be this fri but next fri then we have Xmas etc so he said it’ll probably be 3rd Jan before I hear anything. What a wait again ! He’s going to send me the CT report so I can have a read. Can’t believe they didn’t look at it before and discuss it . But I can’t do anything but keep active and wait . 

Hope you are keeping well and work is helping to keep you occupied. Until I get more information not saying anything to children as things are already hard at the mo at home. Youngest is in a leg cast and I’m waiting for her to be referred to a hospital (miles and miles  away) for chronic pain management. She can’t walk so you can imagine it’s hard work with her and her mood swings ! Xx

you take care xxx

chrissy xx