Hi
I know that it is only just over 2 weeks since the SBC was confirmed and we have had Christmas/New year in between but I am getting so frustrated with the lack of communication from the hospital. I have spent 2 days trying to contact the Onc through his secretary with the phone either just ringing out or saying that the line is not accepting calls at the moment. My husband eventually got through late yesterday and the secretary said she would leave the onc a message. I’m currently having problems with breathlessness and some pain in my side, the GP says it is fluid in my lung that is causing the problem but is reluctant to do anything without the Oncs say so. The GP, who was a locum, also said I would have to decide if i wanted surgical intervention or to make the the most of the time I have left, which has sent me into a panic as i have now convinced myself that the reason nobody is contacting me is because there is nothing they can offer. I can only assume the GP had seen the scan results and based her comments on that. My CT scan was done at the beginning of December after I had been admitted to A&E with a possible PE causing the pain in my side, The PE scan was negative but they also did the chest and abdomen scan that i had scheduled for the following week. When the results came back the Dr wouldn’t tell me anything but the look on his face said a lot and the relief when i told him i was already scheduled for a biopsy in a weeks time. I felt then that they just wanted to get rid of me as there was nothing they could do, they even sent me home the 15 miles in a taxi, still in pain, at 11:30 at night. Sorry if I’m going on a bit but I am trying to put on a brave face at home as my husband is finding it all very hard, he too has lung cancer, only a small primary that they are hopeful will respond well to treatment, we have an appointment for him on Monday.
Sandra, how awful for you, it’s no wonder you are becoming frustrated. It’s bad enough being given a SBC dx but to then be left in limbo not knowing what plans are being made is unfair and insensitive to your needs.
GP´s, particularly locums, often have little real knowledge of secondaries so please try not to read too into her reaction. We shouldn’t have to chase around for appts etc but unfortunately we often have to. I hope the Onc gets back to you but if you haven´t heard anything ring again tomorrow and start getting astrology, tell them if you’ve not heard anything by the end of the day you will be going to PALS about it.
Good luck, let us know how you get on. Hope your husbands appt goes well on Monday xx
Hi Sandra ,
I am
So sorry that you are going through this , you and your family must be in shock I know that I was ,
It must be very hard for you this time of year having to wait to see the oncologist who will go through everything with you including treatment plans ,
Hang in there , try and chill a bit ,
Here for you
Regards Marcelle
Sandra I am so sorry and uunderstand how worried you are.i have had six months of chemo etc and was then told on 7th November that my metastitsis in my lungs had grown and now in my sternum
Now Kadcyla I have just had my third this week is causing corneal erosion
The only advice I can give is persistence, going to PALS and getting in touch with Macmillan and getting a nurse out to see you
You need to offload and need someone other than family to help in my opinion
Sending lots of love
Kate x
Then Onc’s secretary did get back to me late today to say that they are still waiting for my original slides from 12 years ago to arrive and be compared with the new biopsy, we moved 200 miles last year to a different area so the hospital had no history for me. I asked about the breathlessness and she said my GP had been in touch but the Onc had not made any decision yet.
Thanks for all your support, it helps a lot knowing you are not alone on this journey and others are having to travel the same path.
Sandra x
My husband had his appointment the hospital this mornining, he has a small semi solid Adenocarcinoma in his lung, but the good news is it hasn’t changed at all since his last scan so they are happy to leave it and repeat the scan in 9 months.
Whilst at the hospital we called in at the Macmillan Centre and spoke to the Nurse there, she was very helpful And is going to find out who my BC nurse is and chase up about my treatment plan. Apparently my Onc is very laid back! She is also going to arrange for me to get a blue badge. She was quite annoyed about what the locum GP had said, but at least my husband and I came away feeling more positive. Hopefully things will start moving this week.
Sandra 
Hi Sandra,
So pleased you had some good news today ,Great idea to seek advice of Macmillan,
Take care
Regards Marcelle xx
Hi I am due to see the Onc on Wednesday and find out exactly how far the SBC has spread and hopefully start chemo. I have had a horrible weekend with a lot of pain in my lower ribs and struggling with my breathing, my sats were falling down into the top 80s but mostly hovering around 90. My husband called the out of hours service who told me to take stronger pain killers, luckily I had codeine in the cupboard which I had for my hip but had stopped taking as they knock me out, the Dr told me to take them with ibuprofen inbetween which I did. I then started throwing up and realised that each time it was about an hour after taking the Ibuprofen so have dropped that. My husband had the GP out this morning, and they have prescribed morphine for the pain and said that it is up to the Onc to decide about treatment and drainage of my lungs. I was supposed to have bloods done today at the hospital but as it is 25 miles away I am not going to make it there with the pain, I just hope I feel well enough to get there on Wednesday.I
Sandra x
Hiya Sandra
I’m so sorry you have been in so much pain and always at the weekend. At least you have some pain relief but it sounds like the oncologist appointment on Wednesday is vital for some medical help and plan.
I don’t know what to say really but roll on Wednesday for you .
We are always here for support and also you can ring the nurses on this website for expert advice in the meantime.
Sending special hugs
Xxxx
Hi Sandra,
Hope you get help with the pain very soon it must be horrid for you ,
Thinking of you on Wednesday and that you get the help you need ,
Kindest regards
Marcelle xxxx
Hi after a 2 hour wait at the hospital I got to see the oncologist, but still feel confused. He doesn’t think the pain or my problems breathing are caused by fluid even though my GP said there was fluid there. He still hasn’t looked at the CT scan himself but he did have a quick look at the bone scan report which picked up on my ribs, where I have all the pain and my hip which I had previously been told was arthritis. He sent me for another chest X-Ray and said they would discuss me at the meeting, pathology have still not compared my biopsy with my original cancer biopsy slides, he said that they had only just received the slides from my old hospital! He has given me my chemo tablets but has told me not to start taking them until I hear back from him in the next day or two. He did ask if I wanted chemo or would prefer to be passed to the palliative care team which considering that he had told me there was a 60% chance that the chemo would work in controlling the cancer seemed strange. The only thing I know for sure is that the cancer has returned to my lymph nodes along my collar bones, in my neck and in my chest but am not even sure if it is the same cancer, and after yesterday’s apointment i don’t have a lot of faith in the oncologist.
Hi Sandra,
sorry to hear about all this, you dont need it!
as the others have said, gps are completely inept( usually) about what to say re bc as they are not specialists.
Not in bc…they are in other things.(they do try!)
try and hang in there…re ‘palliative’ care…that was a bit tactless, but actually all secondary ladies are having this…
its a horrid word, that we all associate with doom and gloom, but actially means something like ( my own interpretation here) helping us to live as good quality if life as we can… With an incurable illness.
The Marsden calls it ‘chronic cancer’, which it actially IS’ just as MS and Diabetes are…hope that helps?
also hope that today you get some answers…thats the worst thing not having answers. If you dont hear…try calling the onc secretarry, have done this loads of times…they usualky are really kind, but if no joy then the bcn
and great that macmillan are helping…they can move mountains if need be.
lots of love…will check in later after my chemo todayxxx
Moijan???
Thanks, I never heard from my Onc so tried contacting his secretary a few times o n Friday but could only get an answer phone and nobody bothered to get back to me. My husband has written to th Onc complaining about the lack of information we have been given and asking for copies of letters and reports and if I have been given a BC/Macmillan nurse. Hopefully I will hear something tomorrow, not sure if i should start taking the Cap tablets tomorrow anyway.
Sandra x
Hi
I had my oncologist appointment yesterday after my second cycle of cape, he was away so I was seen by the specialist Macmillan nurse and what a difference! She explained everything to us and showed us all the scans and results in the computer. The bone scan which was done at the end of December and my onc had been very vague over, shows large glowing areas over my right hip back and left ribs and a small glow in my breast bone. The report states that the hip, ribs and breast bone are strongly thought to be metastatic. My CT scan seems to have got lost in the system and she couldn’t access it, but a chest x-ray done in Jan shows fluid in my left lung which my GP had also found prior to me starting chemo and had contacted my onc about, but when I had seen him in Jan he had said there was no fluid in my lungs and had written to my GP saying that he did not know why I had pain in my left side.
The nurse realised that we were not happy with the oncologist and gave us an anonymous questionnaire to fill in on how we had found the service provided. I would change hospitals but as we now live in rural Lincolnshire there is very little choice without travelling a lot further.
I seem to be responding well to cape and the pain in my ribs has nearly gone, my bloods were all ok, liver function and kidneys are down but apparently they have been all along, next scan in about 6 weeks!
Hugs
Sandra x
Jacqui, I am at Lincoln County Hospital