To have the op or try alternative

I see all the posts, DEM.  

I find that the posts don't always show after you posted but if you go back to the thread they are there. 

There have been no replies as yet. 

Hi All

DEM - your full post was on 27 February.  Was there another one which has gone missing?  Your posting dates: 27 Feb, 9 Mar and 11 Mar are on this thread.  Can you remember when you posted and what? I cant see any response between 27 Feb and 9 Mar.  I do note that you have accepted the chemo treatment and I'm with you on being scared of that!  I send you all my positive thoughts on its outcome.

On my front, I went for the appointment with Immunology.  Yes it was with this department.  The immunologist hadn't a clue why I was there!  I had brought with me the results of the three blood tests I had had done via the GP looking at the ALP test which was 194 when the ceiling is 130!  After lots of questions he suggested Paget's Disease.  Looking this up on the web it starts (linking it to my breast cancer) as scaly skin on the nipple.  Nope, I don't have scaly skin on or around the nipple or areola!  Don't have eczema, dermatitis or psoriasis which can make it difficult to diagnose.  The web thinks this is a pre-cursor to breast cancer.  I know I've got that.  He didn't do a physical.  It could also link with the bone but that has been 'cleared' from the bone scans.

As a result I popped into my GP's to find out if there were any notes on why I was sent.  They got back to me by asking me to go in for a review as they didn't have a clue either!!!!  So I go tomorrow - Monday - to see the GP.   Maybe then we can figure it out.  My original GP has left and I will see the head of the practice this time.  Another 'head' to figure this out.

For myself, I am actually quite well.  I don't have any other health issues which could affect me - physically and mentally!  Even though I have been diagnosed with BC the only problem I have is the hot flushes from the Anastrozole and they are lessening - so should I be worried about that!!  My head says that the endocrine therapy is working if I suffer from the side effects - how stupid is that as its the 'fillers' which cause the side effects!!  I am also 'aware' from my oncologist/surgeon that he did say that the endocrine therapy can/does stop working but also that it can get rid of the cancer.  He knows of two such cases.  As from my previous discussion we also know that the cancer is 'stable'.  Thoughts, Questions, Thoughts, Questions.  Yeeecccch - you could go nuts over this!

Anyway will get back to you all after I have had my conflab with the GP.

So, from someone  ... still fighting this nasty little critter...

Love and positive thoughts are with you all.

Hi All

Results from the GP.  He checked the computer and 'lo and behold' some of the side effects from the endocrine therapy is that it can mess with your other enzyme levels.  All my research never picked up on that one.  So I don't have to worry any more about my ALP, serum triglyceride etc.  I told the GP that the doc from the hospital had taken another blood sample from me and was probably waiting for those results before he can write to him (the GP) with a copy to me.  The GP did say that he would like to take another blood test from me sometime in June - just to check!

I also got a copy from the GP on my gallstone.  Radiologist says it is approx. 7mm - a bit bigger than was mentioned from the CT scan!  BUT no action will be taken as there isn't a problem with it now.!!!!

Oh, happy days....

Back when I have something more to tell 'thee'

.... still fighting this nasty little critter....

Hello and sorry not been back with update as so much goes on and in between research ie finding out that the chemo the BCN told me I was to have was wrong one,s and as she spelt them out to me I wasnot mistaken !!! three weeks of anguish wondering why such a harsh treatment when its a 2.2cm stage 1 grade 3 no lymph node involved and clear margins...!!!!!? I am over reacting  ? as was only having chemo as the loading for the herceptin ..

Oncology meeting. Lovely young woman (,not onco himself) .started to go through everything ,at last brilliant :-) .told me it was to be short cycle of Doxetaxel cytoxyan  3 wkly + herceptin wkly for 12 weeks then H for remaining year 3 wkly.

Why Oh why has this all been such a mess ..stating with little things like is the blue stuff for locating lymph nodes radiation. No its dye...why cant they just tell the truth..this is Ireland tho and I know of others with cancer who are getting every bit of information ,with me they are just getting me through as quick aspossible because of missed diagnosis ..but im still a person.. OOppps..Im ranting but hey its good to right this down and hope anyone reading will understand.

Moving on..Had chemo friday no problem what so ever..sat buzzing on steroids ,didnt like it but did a bit am and rested.up till 2 am tho. had the nualasta injection 1 pm and only slight sensation up tp now no pain .Great.

Today. still ok altho tongue bit sore ( taken my partial denture out ..Shuuu ) .When I  went to get washing in and its not 20 yds and was out of breath and heart pounding took a while to settle ..didnt like it so having the rest of the day off.

I do feel better for having got through the first one as I was so nervous about it.

The reason I looked at this discussion was seeing "Cloecat 45 post and was heading in the same direction as in was hoping to do alternative less invasive treatments and went a long way in aquiring the herbs and supplements etc doing a big detox  no sugar (only from food ) not even fruit for a couple of weeks and taking supps, fresh lemon tea and ginger ,green tea, buying Organic when possible ,no or little red meat no dairy ,was tuff but I am sure that it must help to reduce toxins and lessen side effects of chemo.I live in Hopeand will use them all as maintenance when treatments finish...

Cloecat45 I am following your progress but have not had a chance to research what you are doing. I do admire your strength in going your own way and managing the lac of communication these things seem to create. So pleased that you are carrying on with your way with confidence. Good on you girl.I knowyou have a huge list of supp .s and wonder if you want to email and share knowledge.?

I hope this makes a little sense and it brings it up to date with my journey so far..

I havethe herceptin on thursday as they thought it would be too much all three same day and will post how it goes.

Hope I haven't bored you all with my rant ...but I do feel better putting it into words like an of load with a good friend. my sole friend died 4 years ago this month Not cancer but tragic and I miss her.  

Love light and Healing to all.

D.xx 

.

Hi DEM

Not a problem on the 'rant' front.  Just putting down in words all your thoughts and feelings helps sooooo much.  That's my reason for this discussion.  Sent you a friend request.  Don't know how it works but I guess we will find out once we get started.  Hope the 'buzzing' has gone - don't want you being accused of being drunk!!!

'Speak soon'

... still fighting this nasty little critter....

HELLO.

I am still not finding my way around this site ,as mentioned before not very tecno minded.

I see/ remember your last post and I think we are of a very similar mind set especially with regard to just doing as we are told !!!! no way this is my body and I want to know every thing about what is happening and although there are those who would just go along with the plan that is given to them ,I also feel I have made life a bit harder researching so much as not everything I have read has been to my advantage ,I think I scared myself more knowing the details but then I would rather know than not .As you say like lambs to the slaughter or after the horse has bolted is just not me .

The other things we seem to really agree on ie food, packaging, carcinogenics in general , the more I have learned the more I am determined to change my life style even though I thought I was living a healthy life I  know there is masses of room for improvement .

I enjoyed your rant 90% could have come out of my own mouth .

Today I went for the Herceptin the important one I need and having read the affects it can have was quacking in my boots .... nothing ...not a thing ..I can be my own worst enemy... but this journey and its cock ups so far haven't helped my confidence , like today , a canular was put in by my elbow but trying it, it was filling under the skin so another was put in my hand . When she came back with the Iv stuff she put it in the elbow ......errr " I thought you where using the hand " ...Oh yes and moved it... what the consequences could have been I don't know... F..F... sake . It would be much more comfortable if I could trust, but its hard..

Well im tired this eve so going to zone out in front of the TV for a while . Badly need to catch up on sleep as have been sleeping like a baby...awake every 2 hours .

I know I mentioned it before about B17 apricot kernels, I was only taking a low amount till I knew where I was going and the Essiac tea I used for 6 weeks and I could tell it was having a good affect on my system ,I just felt good !.

Till we chat again.

Take care of U.

Diane .      Im useless not sure if this is on private messages ..Durrr I will concentrate one these days or maybe e.mail if you prefer ?.

Hi DEM

Left you a private message for you to read.  Just wanted to say on this discussion that I hope you are still okay from your Herceptin injection.  Sometimes we do get ourselves so het up about a treatment by reading up on it that it can affect our perceptions.  The relief that it's not that bad is monumental.  I had that when they did a CT scan for my bone and putting in radioactive stuff.  I grilled them mercilessly about it.  Having been told that it has a half 'shelf' life of 6 hours, the next 6 hours another half 'shelf' life and so on, it was going to be 'out of me' within 24 to 48 hours but it did screw with my head, I tell you!  AND all this radioactive stuff goes into the sewerage system which is then treated to return back as drinking water.  O Oh!!!

I also think we have to be truly compus mentis when having treatment - as you have found out yourself.  Not found any evidence to the contrary but I wonder how many wrong boobies have been operated on....

Talk soon - stay well - keep your wits about you - love and hugs

... still fighting this nasty little critter

Dear All

Well hello there ladies.  Due for my 6 month check up with surgeon/oncologist on 18 June.  Want to have an US beforehand due to a bit of an 'ache' in my right boob which I think is from my titanium clip from when I still try to 'cop a feel' of the tumour so will be ringing the hospital soon to set that up.  But just wanted to tell you a little story.

Received in the post a Breast Cancer Screening letter for an appointment 21 May.  As you are aware I haven't had the conventional treatment but am on the endocrine therapy - still.  Now I didn't expect this appointment as I thought as I was still under hospital care!  I meant to ring the screening people to cancel and tell them this but they actually rang me on the day.  Seems that the mamm machine had broken down.  They couldn't take my cancellation over the phone and said they would be sending me another appointment letter!!  I can then return it to say no.

Seems one hand doesn't know what the other one is doing!!!  Anyone else getting screening letters 3 years down the line?

...... still fighting this nasty little critter ....

Hi All

Well, I had my check and all is okay.  Will be having a US in two weeks time to check on the boob.  I can then get a copy for my records.  Right boob is aching a little at the moment from the breast check.  Left is fine and dandy!  Must be the titanium clip?  Consultant also checked under both arms and for the first time he checked (I think) my ovaries.  All good.

In talking with him I learnt that as I still get the hot flushes the Anastrozole is working!  Now I didn't know that!!!!!!!

On the Photodynamic trial front - sorry news - only 10 ladies have signed up when they need 30 for the first part.  However the consultant is trying to get the trial re-configured so that ladies with DCIS type cancer can be brought on board who would only require a lumpectomy afterwards but this is proving very difficult.  Probably NICE being absolute berks!

Other than that I am a happy bunny!

.... still fighting this nasty little critter......

Hi Chloecat,

Great to read things are jogging along nicely for you :-)

Hopefully if they get the go ahead with the new parameters the PD trial will find enough patients to proceed ?

Take care, G n' J