Am I getting the full story?

Morning all, (particularly the nightowls),

I met with my oncologist yesterday and have concerns that either I am not asking the right questions or not being told the full story…

A quick recap for those who don’t know me.

Diagnosed in January with a 10-12cm breast cancer,
Had 6 FEC, but despite asking the proposed scan at FEC x 3 was not completed and a measure-up told me nothing
Had full mastectomy in June after 4 week delay due to bad cold
The cancer removed was at least 9cm very aggrressive, of 23 lymph glands 11 in the lower and 1 in the upper were infected.
I was told that I needed 6 x Taxotere and would then have immediate rads with no waiting. After asking I was told that based on historic data I had a 1 in 5 chance of being cancer free in 5 years, but this would increase to 1 in 3 on current data.

So started Herceptin 3 weeks ago, with Anaphylactic shock soon treated, but scary - never think they are wasting your time by keeping you in that first time. I then had TAX 2 days later and had a lot worse time with side affects than I had with FEC, which my surgeon told me was usual, but my ONC said was unusual, then I had an infection which despite 3 days of trying I could not get under control so ended up in hospital, coming out just in time for my second dose of Herceptin and then TAX yesterday (hence the sleepless night)

Anywy the crux of it is… I am being told that they are pretty sure I will have secondaries, but they have no idea where and a “scan at present would not be worthwhile”. Even though the FEC clearly did not work, they will not admit that they should have done an ultrasound at FEC x3 and I could have avoided the last 3 FEC and perhaps tried TAX earlier. I just keep getting told that they don’t know what they are dealing with and when I get new symptom then they will look elsewhere - which of course makes you paranoid so every ache and pain plays on your mind (have not reached the stage of going to docs for them yet thankfully) as a layperson I have no idea what I am looking for or where… this disease really does take over your life!

ALSO sorry to harp on, but it is the middle of the night… anyone help with TAX sideeffects including, but not exclusively:
Muscle aches - apparently no treatment
Pins & needles/ numbness - I an on a slightly lower dose this time so fingers crossed
Dreadful stomach cramps - apparently there is something I can get from the pharmacy… anyone know what please? The associated Jonny Cash and otherwise inmentionable “burning RING of fire”… if you get my drift???
Insomnia which continued for 11 days with the last lot until they gave me tamazapan in hospital and I am sure we all want to avoid them - cocoa does not really cut it, even with a shot of rum!!!

Anyway I have gone on far to long, but I am getting desperate as I seem to be no further on after 8 months treatment - I thought I was nearing the finish line, only to find that I have half the marathon still to run!

Dont get me wrong folks - I know there are a lot worse off than me and I remain relatively up-beat, but incredibly frustrated like all of us I am sure!

Hi, Phardy, sounds awful - and the problem of mind over matter is very recognisable. Many of my symptoms turn out to be non-existent when investigated.

Have you considered seeking a second opinion? Where are you being treated?

No wonder you have a bit of trouble sleeping - at night the mind races and imagines a million scary things… cannot help you much. Sleeping aid is scary, and camomile is not quite as powerful it is made out to be…

I found that valeriane (herbal pills) is quite nice - doesn’t make me sleep but take off the edge and calms me down enough to sleep off again when I am really a basket case - it is over the counter in france, not sure how it is in UK but probably the same.

wishing you the best.

Hi Phardy

What a terrible time you have had and are still having… as others have said no wonder you cant sleep. I had 3 FEC and 3 Taxotere but was very fortunate with side-effects except for being hospitalised after the 4th with neutropenia (very low neutrophils) and a temp of 38.7 (they didnt know where infection was). Im not too good at being able to offer advice as to side-effects, however, if you had neutropenia after Tax (when you were in hospital) find out about getting Neulasta injection after your next Tax, I had this after my last one, and have had a very uneventful couple of weeks in terms of infections (had one after almost every chemo!)

However, I just wanted to offer my support and say that perhaps you should think about a 2nd opinion, I would be very angry if I was you and had had 6 FEC for nothing. Its not as if nobody knows that Taxotere is incredibly good for lymph positive women, especially those with aggressive cancers. There are also lots of women on the Neotango trial to shrink tumours who are being scanned regularly to see how the tumours shrink.

I think the fact you are now getting Herceptin is a massive plus though, research has shown that giving Tax with Herceptin is incredibly good. And of course, Herceptin is wonderful at managing secondaries. Must say that I cant believe you havent had other scans, I think you should try and insist on these if only to put your mind at rest and give some idea what you are fighting. In my hospital anybody with more than 4 positive lymph nodes is automatically given a bone scan and liver and chest CT scan.

Anyway, my heart goes out to you that you have suffered so much and still say that you know there are plenty worse of than you… whilst I know you’re right I think you’re really brave.

Take care

Pauline x

Dear Phardy
I read your post yesterday and I’ve been thinking about you. I’m so sorry you are going through such a horrible time. It sounds like there is a real communication problem (at least) at your hospital. I also think you can ask for a second opinion. I’m think this is ‘allowed’ on the NHS. And if you want scans it sounds as though that is exactly what you should get. There are lots of posts elsehwere on the site (under chemo section) about Tax side effects which you might find useful. I’ve been reading with interest (!) as I have all that to come. I’m on my first FEC at the moment and not finding it too horrendous…I wish I could get that slimy taste out of my mouth though…
All the best
Jo

Thanks for all the posts - I know I was having a right old moan, but the frustrations of not knowing what to ask for or how we should be reacting is incredibly debilitating.

I thought I was “lucky” to have private health care with my job, but the more I read this site the better the NHS is looking. I have only met me oncologist 4 times in 8 months and the last one of those was because I insisted and waited for him on my chemo day - he does both NHS and private patients and I think we pay more (albeit I don’t) to get worse treatment. He will not answer me question regarding the scan that was due during my FEC and avoids it with no embarassment - in fact I had to check with my husband that the words came out of my mouth and I did not imagine them. It frustrates both of us hugely, but our view is let’s get over the treatment - get well and then look back on what has happened - we need the doctors at present. It is the being fobbed off and treated like I am not only ill, but have become a child again who cannot possibly understand.

Anyway I will try the cures offered - the valarian sounds great and I have camomile… that said - even on double dose steroids I slept for 8 hours last night - perhaps “getting things off your chest” is the key - and a big THANKS to all of you for that - this has helped no end.

Quisie will take your recomendations for the Jonny Cash thing… helping already (as husband has pile cream - no shame in this house, too many years of builders bum!!!

Pollym I am comforted by what you say about TAX and herceptin and cannot understand why this is second choice, but at least I am lucky enough to be getting the treatment now. I did have an initial scan back in Jan for bone and liver etc, my worry is that they know is has spread and clearly the FEC did not work so it had another 8 months to grow unchecked and lets face it - it only took me 6 months to grow and 10cm tumour in me breast! Anyway the more I think about it the crazier I get and as long as I am now on the right track I can deal with all the later… see sensible head after good noight’s sleep. They offered me the injection for neutropenia in hospital as my white bloods were down ay 0.6 and temp 38.7 (snap), but they started to recover. It is an option if I am that bad again though! There is stuff that you should apparently avoid eating if you are neutropenic and apparently it is anything uncooked - so no salads etc as they harbour more bugs - they only told me when I got hospitalised though!

Joanna, good luck with the FEC the taste in the mouth did ease for me after the 3 lot - jope it does the same with the TAX. The sickness thing is mocu worse with FEC, but there are all sorts of good anti-sickness drugs so do not be afraid to ask for different types - with the first FEC I had this taste, but also had a strange smell whcih was like slow roasted beef - kept asking my husband if he could smell it, and he always said no, untill one night we were having a hug and he siad "what is that smell - like beef - it was only my skin - lovely, but at least I was not going mad(der)… that disappeared after the first lot too. Oraldene is the best mouthwash I have found for the taste - It helps with the sores later too!

Best of luck

Thanks to all, it really is greatly appreciated and for anyone who needs it. I think that we are all amazing and deserve a big pat on the back and hug - I hope everyone is having a good Saturday with their loved ones around them and lets face it - this does make you appreciate them so much more!

This is keeping me sane… I think!

Dear Phardy

I have just caught up with this thread and I cannot believe how you are being treated. You should be able to demand a scan if you want one to check for secondaries, as best to find out in some ways to know what you are dealing with, but hopefully you wont have any. Can you not get to see your doctor and ask for a referral to see someone else and tell them your worries. You should not have to wait and worry like this, it is not fair on you and certainly not good for your health.

I am on FEC x 3 and Tax x 3. Had my 2nd FEC on Wednesday and so far not had any sickness either. Am also having the Oraldene, which I get 4 bottles of before leaving the chemo unit and it has worked so far. My antisickness tabs work well so far and am taking them as prevention rather than waiting. My only prob I have, but coming to terms with is that had my head shaved last night, but feeling better about it today.

Anyway, I wish you well and hope you can get the answers you so desperately need. I have to say though push for a scan, I had MRI, Bone and CT scans, You may not get any symptoms of any kind, I didn’t and at least if you have scans you can then be given the necessary action if required. Please please push to get yourself heard and seen.

Take care and let us know how you go.
Love
Dawn
x

Hi Phardy
Sorry you are having a tough time. Can’t really offer much support. I’m 37 and have had a 23mm aggresive grade 3 removed in June - lots of lymph involvement and put straight onto 6 Taxotere and 5 weeks Rads then Herceptin.
Just got 3rd TAC yesterday. The nurse then comes in on day 2 (this morning) and gives me the Neutragia (not sure of spelling). So far, not too bad -always scared to say that. I vomited after no2 but they changed the anti sickness and upped the dose for the next 5 days so fingers crossed.

I have had constipation followed by the other with number 1 - then tried senna tablets which seemed to help but fart like an old dog sometimes (sorry to be blunt).Also I was on iron which I stopped as I felt it bunged me up and then when the diarrohea (how do you spell that) started it was awful. We’ll se how it works this time.

As for the other syptoms - have had really sore knees - feel like 87 climbing stairs sometimes - then other times feel almost normal.

Good luck

MuddyXX

Hi Phardy

I am quite shocked at your lack of appt’s with being private, sounds like we have quite similar path reports and I am NHS, I have a consultant surgeon who I feel didn’t tell me enough and a Onc who I feel went too far with the info, so here goes my story.

I first went to GP and BC in Oct 05 with what I kept being told was a 99% sure small harmelss lump, mammo came back all clear and 3 FNA + Ultra sound were inconclusive, was told to come back 4 weeks later for another ultra sound to find lump had doubled and test still inconclusive, I was given core biopsey and 3 weeks later told I had breast cancer, due to lump doubling again and time delay in diagnoses was advised to have immed emergency mastectomy + SNB, the consultant surgeon came to see me the next morning to tell me lump was big and he had to totally clear all lymph nodes and quite a bit of my chest wall. I saw him the nest 2 mornings then he was off on christmas hols so I had to wait for new year then I had 3 more appts due to fluid build up and path results. Now he did slightly tell me what he wanted i.e good news the cancer has gone which I now know is he had clear margins, then went into treatment plan of chemo, rads, tamoxifen + herceptin if I was Her2+ (bearing in mind this was not licensed until OCT 2006) so left feeling rather confused but confident. Nothing else was mentioned.

Then met my Onc, well you could never make her up, she is very straight talking and read my path report in quite a dramatic style I would never wish on anyone even holding her own hands up to the level of her collar bone to explain the seriousness of the amount and level of nodes involved. I was so shocked and numb with what she said and how she put it i.e. treatment is just to try and maintain/control it, I even had to sign a consent form with those words, I demanded scans there and then but she refused advising if I did have secondries it was too soon for them to show up and she would rather I have treatment first to try and blast any nasties. At the time I thought it was my health auth being tight (they are actually the most under funded in the country and were being taken to court by other ladies after herceptin) but after finding this site and having very big chats with my GP (who did report her) and the BCN I did learn that she was telling me as it was but very much lacked any bed side manner.

However this is where it turns, as much as I really didn’t like her to start, I knew I would always get it straight from her plus I sensed she was good. She got me on 4 FEC + 4 Tax + 18 Herc (both tax and herc were still unlicensed so she had to go before the board for special funding) .
As soon soon as I started treatment she saw me every 3 weeks for 7/8 months, then changed to 6 weekly once only herceptin + tamoxifen, she visited me in hospital while I was very nuetropenic and in quite a bad way and prescribed me neulesta injections which are very expensive. I went to quarterly earlier this year and have recently switched to 6 monthly which she says is rather early but because I have plastic surg appts she is happy with arrangment.

I am having scans now, but only due to plastic surg refusing recon otherwise, my Onc is not happy as she feels the amount of blood teats I have had are fine, I dont have any symptons and she hates to pander to a surgeon (however he is a consultant surgeon). Have had first results back MRI on whole spine and surrounding bones which are good with no evidence. Now have CT chest and liver scan, I am dreading these I as now realise that if tests come back with findings then I am terminal and this is a whole different criteria, also no recon and I now realise this is exactly what my Onc was trying to tell my from the start,

Its a tough one to call, if you do have spread but the chemo could wipe it out do you want to give it a chance before you know up front and therefore have to declare it or would you rather try and have faith in the treatment or be given false hope by scans that cannot pick up stray cells.

I did the find the taxotere harder than the Fec - was very run down but no sickness or dizziness.

Hope I haven’t gone on too much

Debbie X

Debbie

Sounds like you have had a rough time and we are certainly on a similar track - However unlike you I do not think that my oncologist is a straight talker, but then not everyone wants one! I however would rather have all the facts so I can make life choices. I was in hospital for 5 days last week and I didn’t see hide-nor-hair of him, in fact he passed me on to a junior who forgot me altogether - ooooh did I feel special??

I have agreed that I will have scans in January which is a year since I was diagnosed, but like you it will be with my heart in my mouth!

I am day 3 after my second Tax and starting to feel rough now - but not the sickness that I had with FEC… it is just the aches and exhaustion - hoping to avoid neutrpenia this time though!.

I hope you get the all clear and can have the rebuild… they have told me at least 2 yrs before I will be considered, but as I have a false tooth, a wig, what is a fake breast to add to the list… as long as I don’t lose any other more vital bits!!!

Thanks for your story - it all helps!