Hi Marirose,
What an awful day you had, especially when you were all hyped up waiting on results. There usually isn’t any excuse for doctors not being familiar with your case before an appointment but it sounds like your hospital has a real staffing crisis. At least you will see an experienced doctor next week although it’s very stressful having to wait an extra week for results. (((hugs))) ×××
Thankyou everyone
FF I could have done with you coming to give me manicure and pedicure I had to do it myself this morning.
I have settled down now but I keep analysing Wednesday and I blame the experienced oncologists team for leaving young registras to keep the clinic going apparently they were in a MDT meeting. Poor thing I bet she didn’t bargain on getting someone like me.
So now I have to wait another week to know whether I am on the right treatment. But again thankyou for your support it helps to vent your anger with people who understands
Good luck to others going through SCANXIETY love and (((hugs))) xxx
Jeanette
Just to wish u best of luck with your mri scan results this week.
Hope they come through early so u can get into holiday mode and enjoy the trip.
Hugs xx
Ps : hugs to everyone else this week waiting for results too …it’s scary xx
Marierose, what a disaster for you. This has happened to me before andi have dissolved into tears i the waiting room…awful. At least the last time it happened my new onc chased them up and even had a conversation with the radiographer while i sat there. I am due for another scan in October and he had told me that, before my apointemnt to see him, i should ring the ct dept and check thatmy results have been forwarded to him. will hopefully alleviate the added stress as its bad enough getting reslts never mind waiting even longer for them.
Talking of oncs, that brings me to another point. Although my first onc had a wonderful reputation i found i lost faith after my misdiagnosis.Although second opinions confirmed he was giving me the right treatment and doig the right things, i always felt like i had been ‘given up on’ in some way. He retired in March just as i was hospitalised for pleural effusion. My new onc even came to see me on the ward and up til now has been very thorough and has given me back some faith. Hopefully those of you getting new oncs may also have a good experience…lets hope so.
Good luck and warmest thoghts to those awaiting scans or results. xxx
Feel so down had the most horrible day started this morning went for a podiatry appointment waited ages then looked at appointment letter it should have been yesterday.
The car decided to act up so we decided to use the hospital shuttle bus to my clinic app. Only to be told they were running 2 hours behind so last weeks chaos was still happening. But I did see the onc who has come out retirment and she is great and Jenny was there too BN. Told them I had a bad day and she said its going to get worse.
My scan was horrific I now have multi liver mets peritoneal haziness in keeping with peritoneal disease my tumour has now gone from 28mm to 42mm I have lung modules that have increased from last scan.WHERE DID THAT COME FROM NO-ONE TOLD ME ABOUT THEM.
We were too late for the last shuttle bus so we had to get a taxi arrived home just before 7 pm.
Sorry will chat another time I am going to have a stiff drink (((((hugs))))) to all xxx
Marirose, how very awful for you…so sorry. ?
How long is it since your last scan…? They must have discussed a new plan with you!
it wont help, but I have widespread liver lesions for three years now. I think a lot of us mght have the peritoneal lesions without realising…my onc said that my bc ( lobular) can affect the abdomen.
I do hope the wine helped? When you have had chance to pick yourself up off the floor and dust yourself down, I hope you feel a bit better. Time for a barrell of Carolyn’s chocolate.
much love and hugs
Moijan???
Hello marirose
I don’t know what to say really …such a shock to get results like that after you have been through the ect treatment recently .
Obviously your treatment will b changed and you will b doing a lot more hospital visits.
Sorry as usual as much help as a chocolate teapot …maybe a visit to the cyber cafe.
Carolyn xxx
Marirose I’m so sorry to hear your news.what a bad day…i have peritoneal liver and bone Mets…at the moment iv started erubulin .so I hope you have a plan now…thinking of you.sharon.xx
Hi all
Thankyou for your well wishes I was determined to get some sleep and I was almost dropping off when I suddenly became wide awake. After 2 hours awake I got up and decided to do something I said I wouldn’t do go onto the computer. I read my scan report again to look up the words I didn’t understand when I noticed I had read the tumour increase wrong. It wasn’t the left side and the chestwall tumour it was the right side which I never knew I had a tumour there. Why I have not been told I cannot understand this is the first scan result I have asked for so I had lung mets and a new tumour unknown to me.
Please try to get reports and don’t be like me and trust the oncs to be straight with you.
I am now in a postion of deciding which chemo to pick Epirubicin weekly x 12 Vinorebine capsules or Paclitaxel weekly x 12 I am to have a MRI scan she has requested one for this week and wants to see me for treatment discussion next Wednesday. So it is a wait and see scanxiety again.
Sorry if i may seem negative its hard to be positive right now I am in limbo land. I will come back fighting when I have more knowledge under my belt
Love and (((hugs))) xxx
I think we are only spoon fed bits of info and I live in moo moo land so am happy with that and wouldn’t want to see my scans !!
Yesterday, when I was having my bone juice in the chemo ward …every bay was full of little bald people being pumped with chemo but their positive and cheerful attitude really amazed me …out in the car park were two young girls …absolutely out of their heads on drugs and I felt like dragging them to the chemo ward to show how people there fight to live and they are young and healthy but killing themselves .
Hugs xxx
Lots of hugs and positive vibes coming your way Marirose xxxxooooxxxx
Hi Helen.i hope your doing well on erubulin…im still very tired but think I started it already run down…i get copies now and there’s something on my report that hasn’t been discussed with me .so I’m going to find out next week what it means and why its not been discussed.iv got a big family wedding Saturday and want to enjoy that before I get myself all wound up…i went and had manicure and pedicure for the wedding.must say my feet have been neglected lately…it made me feel better mentally…if only for little while.have you persevered with cold cap.
.takecare Sharon
xx
Marirose
Shame on them for hiding facts …why do they do it or do they forget they havnt til us…my oncologist is lovely but always in a rush so nothing gets properly talked about and all glossed and sometimes shel say something and I think that’s not me❔ …the other week she said oh youl be fine youv got good veins.well she knows I havnt …do they think they’re protecting us❔ …as before she talked to me about vinorabine.but put put me on docetaxol…which didn’t help me much.this Tim I asked for vinoralbine and she said save it for later.and so now I’m on erubulin.hopefully it will bash down on this creature inside me…xx.you deserve an apology from oncologist…at the very least…hugs Sharon.x
Got sore lip.no sickness …no hair tingle or loss as yet.**and tingle fingers…xxsharon
Marierose…i am devastated for you…i dont know what to say. We have been through do much ‘together’ , what with ect etc and as Carolyn says, am about as much use as a chocolate teapot. I also know waht its like to be told something has got worse than you didnt even know about…at the start of my swcondaries i was told that the spot on my liver had got bigger…i didnt even know i had a spot!! Fortunately it was a cyst and nothing else (so i was told). You must feel like you dont know whether you are on your head or your heels, esprcialy now you have a decision to makea bout treatment. If its any help i’ve donr the paclitaxol without much luck, the next thing to be mentioned is epiribucin and i have heard good reports from others on here about vinorelbine. Maybe as 3 have been mentioned it means there are 3 to go at, it just needs to be decided which order??? lets hope so. I know you will reach the right decision and i know you will get back to your old fighting self…as i have said on the other thread…i am relying on you!! If you ever want to pm me please feel free. Sending you lots of love and hugs. xx
I haven’t posted before but was diagnosed in March with primary and suspected secondary breast cancer at the same time. I say suspected as I found the very small lump myself and was reassured by everyone I saw (GP and at initial mammogram etc) that it would probably be nothing to worry about. However, they did decide to do a biopsy (thank goodness) and eventually diagnosed me including a suspicious patch on my breast bone.
The oncologist explained that he did not want to do a bone biopsy to confirm it was definitely secondary cancer but would treat me with denosumab injections and then would know from the reaction to this treatment if the spread was confirmed.
It was a lot to worry about but I did accept this as his plan of action.
So I had lumpectomy and lymph node clearance and the plan was that I would have a CT scan between my 5th and 6th chemo and the oncologist promised to see me “in person” to discuss the results.
I had the CT scan on 30th August and then found out that he had gone on holiday and there was no one available to discuss my results until he returns! I’ve since finished my 6 sessions of chemo and do not have an appointment until 12th October! So no dates for my radiotherapy agreed and I just feel in limbo.
I am not niave enough to believe I don’t have secondary cancer but I feel let down and anxious about the delay.
I’m now, for the first time, experiencing some chest pain and I’m not sure if this is my anxiety at the situation or is real pain from my breast bone.
I’ve got through the chemo quite well but am finding this delay the hardest stage so far.
The doctor I have seen for my chemo review meetings said he can’t understand why I’m worried and that the CT scan results are only for their planning of the radiotherapy treatment! But what about my diagnosis and is a probable 5 week delay between chemo ending and radiotherapy starting recommended? Am I over reacting?
Hi Janey, sorry you have had to join us but welcome…you will find everyone on here really supportive.
I nderstand you predicament but please try not to worry too much, Its awful when you are told one thing and it doesnt happen…what do people think they are doing going on holiday when they should be looking after you!!..at least that was my thought when it happened to me. Unfortunately, to the medics we are just a number whereas to us we are the most important and pressing thing going. I couldnt believe it at first when i kept getting told a few weeks wont make any difference, it doesnt work like that, when all the info you hear is act quickly. If it puts your mind at rest on one little thing, it is normal to have a gap (think 6 weeks is usual) between chemo and radiotherapy to allow your body to recover…it has gone through a major trauma…as i used to say…i’ve been mutilated, poisoned and now i’m going to be ‘nuked’ !!
As for your chest pain, i am no expert but i would say its anxiety…been there myself.
You have already learned that the waiting is the hardest but we will be here to ‘hold your hand’ if you want us to
Nothing will stop you worrying but if any of us can help in any way we will…feel free to rant. rave and cry, we have all done it. Hoping you feel a little better soon. xx
Thanks for your reply Stresshead, it just helps to know other people understand the anxiety caused by all the waiting. I don’t begrudge anyone a holiday but am very frustrated by the timing and lack of planning in the absence of the oncologist.
You’re right though the delay is probably no longer than normal and I need to stay positive so I’ve decided to pick myself up and try not to worry. After all, all of us in this awful situation know that the more negative thoughts yuou allow yourself to have the worse you feel.
Hi lovely ladies
Well I have had a hard week with the scanxiety and hope that someone can cheer me up a bit. Monday afternoon I was due for a CT & feeling rubbish, I had a call from onc’s PA in morning telling me she had to move my onc appt back a week leaving me a wait of nearly 3 weeks for the results. I was not happy with this! !! Had scan ok but Tuesday started having severe breathing difficulties and was hyperventilating. Ambulance called, 1st experience of this in nearly 4 years of SBC, & off I went to hospital for night. 24 hours later I was discharged -all put down to anxiety. Anyway the week was finished off by the BCN phoning me to let me know that there is a suspicious area in my liver again and I have to have an MRI. I am not in a good place right now xx
I had my MRI scan last night never had one quite like this one. I had a cage put on my head (felt like the iron mask) it took 50 mins and I wanted to go to the tiolet but they rushed me in the women in charge were not friendly. I had head phones and music not my choice. I told myself I didn’t want the loo I can hang on they will come to an end soon no they moved me on more stupid noises. Gosh did I part with some wind shall I press the button no they are moving me again it will end soon on and on it went but I managed to last out.
Now it’s waiting for results I see onc on 19th I wonder if the BN could find out for me but then if it was bad news would she want to give it to me. I hate this waiting game.
Good luck to others waiting Loves and (((hugs))) xxx