After several months of reading all your excellent advice I have at long last managed to join.
I live near Reading in Berkshire and am being treated at the Royal Berkshire Hospital. Some of you will say thank god for such thorough diagnosis.
So far I was diagnosed on 6/2 at first said to be mixture of ductal/lobular with a 2cm, and two small lumps. Advised to have mastectomy and SNB. This took place on 10/3. Got results on 25/3. Told I had in fact lobular only and two lumps which were suddenly twice the size. 5cm and 2cm and also 3 out of 4 nodes involved. Booked for full ANC on 18/4 and ultrasound of liver and bone scan. A further chest x ray was also taken and as they had lost first!
Then this Thursday 17/4 one hour before I am due in hospital bcn rang and said they have found something suspicious on my liver and need to check it out.
So a CT scan of neck?, chest, and everything else is taking place today at 1.30pm and results tomorrow. Supposed to be seeing surgeon/onc tomorrow with results. I am said to be Grade 2, invasive lobular. HER2 positive and possibly progesterone positive.
I was gutted to have operation cancelled within one hour and feel I now have no hope. I feel ignorance is bliss and do not want to know anymore. I am now on sleeping pills and tranquillisers to get me through and will probably down a stiff drink tomorrow as well. I never get any good news and still after nearly three months have no treatment plan. Coupled with this my wound has still not fully healed and has to be dressed.
I have tried to be positive but feel so down at the moment. Sorry to be so negative but funnily enough health wise I feel perfectly okay! I have not had and still do not have any symptoms of liver problems or anything else!
I am sorry to read that you are going through such a worrying time and just wanted to say that you may find it helpful to talk things through with one of our helpliners, they can offer you support and a ‘listening ear’. The number is 0808 800 6000 and it’s open Mon-Fri 9am-5pm and Sat 9am-2pm.
I lived in Reading while i was growing up and i still have close family living there. My dad was treated at the Royal Berkshire for a different cancer and they were good with him.
i can only imagine how horrible it was for the op to be cancelled the day before and how it feels for different results to come out post op. I am sending the most supportive of thoughts.
i think the way it is - that they would rather do everything at once than keep calling you in. results wise i think that the only certainty comes with pathology post op. But starfish - u are allowed to shout and say…can we not get this sorted. you are there at the hospital now and u will know tomorrow, i hope. then they can make a proper treatment plan - it may take a week because they need to talk to oncologist - do the multi disciplinary bit. it is a good way of going forward.
I had invasive lobular cancer diagnosed in late nov 07. mine did not show up on mammogram or ultrasound - so core biopsy and then MRI. mastectomy and lymph node clearance… i’m half way thru chemo and after this i do radiotherapy and here is where the difference comes in - i am herceptin neg and positive on the others. Endocrinal treatment works on both.
i know it is horrible at the moment but all of it is treatable. please don’t put hope to one side. it is about the small things as well as larger ones. i felt very blank when i was given my diagnosis but whn i got used to the idea of me having cancer i found the way of doing it for me was to do one thing at a time. i do see the bigger picture but each part is separate and each is a task done.
i know it is different for you in terms of what they are investiagting but even on the day of diagnosis i never thought that i would die. the blunt statement is most of us don’t. We come through this and live good and happy lives.
ah i also meant to say it cannot help if your wound is misbehaving. I only had a seroma which i thought would be with me till old age but finally settled. please keep asking them to sort it out
starfish ive had the same as you with lobular and am now waiting results of liver tests,im 2 yrs down the line now after having mastectomy chemo and rads ,12 of my lymphnodes were involved hence more chemo following my op.they are just doing everything to make sure all your results are in before they plan your further treatment ,my oncologist did say thet sometimes the liver can show up suspect spots as did mine and they turn out not to be anything ,so please take time to rant and rave and ask questions ,i hope everything turns out ok for you .take care lynn x
Just to say will be thinking of you tomorrow.
I cannot help as my Bc journey has been quite plain sailing up to now.
However i know lots of fantastic ladies will help you on here and will have experienced what you are going through just now.
Please let us know how you get on and lets hope and pray as Aroma says its not serious.
I was made to have MRI scan to whole spine and CT to chest and liver last year as my plastic surgeon would not do my op if I had secs due to problems with healing. (this was due to high lymph) my onc was not impressed as my bloods have remained stable and I was getting very regular checks.
I too was recalled for further liver scan as the first showed an area of concern, so I can imagine how you are feeling, I was petrified, I had finished 8 chemos, 18 herceptin, 25 rads and completed a year and bit ot tamoxifen, had allowed myself to get excited for my recon and was just beginning to see the light at the end of the tunnel, I also didn’t want to know about it if it wasn’t going to cause me immediate harm as its a whole different ball game being stage 4, I had ct and mri, the end result was I had a cyst. (and now have 2 boobs too)
Very many thanks for all your good wishes. Received results this morning. They do not know what it is on liver. No evidence of disease. Surgeon has now decided I need an MRI of spine. This is despite bone scan apparently showing nothing but normal wear and tear according to BCN last thursday. Husband thinks this has shown up on CT Scan. I took card to x-ray it was marked urgent and ? bone mets. They are also now talking about ANC on 12/5 but watch this space.
I am not sure how I will manage MRI as I am very claustrophobic and what else will they find. There seems no end to tests.
Has anyone else had to have an MRI as well.
Did meet Oncologist for first time today and there seemed to be a choice about starting chemo before ANC or waiting until after. Couldn’t really see the point as either way nodes have to come out and if they come out first they can more accurately plan chemo.
Also been told I am oestrogen and HER2 positive which is only about 16 to 17% of people. I seem always to fall in the minority.
They are talking about FEC possibly taxotere, rads, Herceptin, 2 years of tamoxifen, 2 years Arimidex and something else after that! So a very long job.
And this is all as a result of three yearly mammograms. Last one apparently being clear Aug 06. Needless to say my experience has dented the faith of all my female relatives in the three yearly mammogram programme.
Love to hear what others think.
Sorry to hear that you’re still being put through the wringer. I think it’s good news that there’s no evidence of disease on your liver. I had a bone scan and a spine MRI to rule out bone mets as I have liver and lung mets. They both came back clear which suprised me as I had bad backache. I imagine your team are being thorough because they want to eliminate any secondaries given your node involvement.
The MRI is a noisy little beast, I warn you. They will give you big industrial ear defenders & sometimes they play music (which is totally drowned out by the noise!). It all sounds very industrial and road-digging and just when you think you’ve got used to the noise it sounds like the fire alarm has gone off and it starts to beep very fast and very loudly. A friend of mine warned me of this beforehand and I’m grateful because I seriously thought the building was being evacuated until I noticed a pattern in the beeps! With regards to claustrophobia, I closed my eyes as soon as I lay on the table and kept them closed throughout and tried to imagine myself lying on the beach and other nice places. It is a long scan but they talk to you through a speaker intermittently to see if you’re ok and tell you where they’re at. They also give you a little button to hold which you can press if you have any problems and they will stop it for you.
Hi Starfish
I was waiting to hear how you had got on. I think so many of us on here do feel for each other and care.
As Ripley says good news about your liver.
I found i was in a total whirl with tests and results ( not always what i had hoped for).
YOu will manage chemo and come through and hopefully get on with your life.At the moment it seems like treatment forever.
I didnt like the MRI but i shut my eyes and dreamn’t nice dreams. I was on a gorgeous beach enjoying the sun with my favourite friend. It passed quite quickly.
Hi Starfish - what lovely ‘names’ we all have on here
I’m so totally thinking about you especially as you have lobular like me. I’m going through to same thing as I need an isotope bone scan tomorrow for a tender spot on one of my ribs. It is really good news that your liver is healthy. I find I am so convinced now that I have bone mets that I will be praying that if I do, then at least my liver is not affected! Of course you go off on all these ‘what if’’ scenarios - if its a met on my rib then pse don’t let if be in my liver, or brain, or lungs etc. etc.
I’m really thinking about you this morning. I’ve managed to sleep until 6am after waking at 3am with brain whirling - so that’s a minor achievement on its own!!!
What a long haul these tests are. (I’m 6 weeks in now and have more results tomorrow - seems too much to hope that it will be the final diagnosis and a treatment plan.) Anyway, just to say when I had MRI on both breasts I was given ear plugs which helped soften the machine noise but not ideal to hear the radiographer on the intercom thing. I would say just try to be in as comfortable a position as possible before you start as you need to keep as still as poss. I found one arm was up against a metal edge and quite uncomfortable and I ended up getting the shakes.
Just going back on one of your comments in the original posting about feeling well. I think this is one of the cruelest parts of all this - we have to be be fully aware of all that’s going on and try to carry on life as normal. The only symptoms I’ve had are due to anxiety and sleep interruption. That 2am - 3am slot seems the worst.
I was very lucky with the liver scan and couldnt understand an MRI on bones when BCN had said last thursday that bone scan was clear apart from wear and tear, normal at my age - 56!
I slept on things. Neither myself nor husband was impressed with surgeon who was on holiday when scenario unfolded last week and my regular BCN is on holiday this week. Surgeon seemed taken aback when I said BCN had said everything was clear last week. I have therefore concluded that if MRI is not absolutely necessary why have it. I rang BCN first thing. She said fine. She would tell onc and surgeon and it would not alter my ANC for 12/5 and chemo etc. So I am keeping my fingers crossed. I just think that as my husband puts it round here “they throw everything at you” .
Onc mentioned FEC and possibly Taxotere owing to size of tumours (that dreaded lobular which grows away undetected and cannot be felt as a lump! so insidious) but then again he said he may keep it on back burner! So we will see. Definitely do not like sound of Taxotere from others comments. He also said it is impossible to keep hair with Tax but some manage to keep 80% on FEC.
Whilst on can I just make a plug for anyone from West Berkshire or thereabouts who may read these forums that there is a really excellent support group which meets at West Berkshire HOspital Tuesday mornings 10.00 to 12.00. Cannot recommend it highly enough.
Take care everyone and lets all keep supporting each other and offering each other the benefit of our experiences through this excellent site.
Starfish
Just read your thread.
I live in Reading too and am being treated at the RBH. Probably the same daft surgeon. I have thought about the support group but have not plucked up the courage to go! I’m 41
Lots of love and i wish you the very best
Julie XXX
