To have the op or try alternative

Hi All

Had the Thermogram.  Doesn't look like its changed but will wait to see report.  Have lymph 'congestion' around armpit area/s which has slightly improved but need to do more to help clear it and that means regular exercise and take some of this extra weight off which I am finding very hard to do.  Must get my head round it as in the end I will be better off for it.

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

Well the exercise should help with the weight!

Hello ladies and gents. Over the last few days I have read the whole discussion,and can see there are those  who are against alternative and ones who go for the conventional treatment and those who are looking for ways with alternative treatments.

I was diagnosed with Mucinous mixed IDC on the 17th Jan while still in shock ( was told it was an early lump probably a fibroid) to a stage 1. grade 3 and HER2 + Er+ which makes for an aggressive cancer.

Without being told any thing and no discussion with any one I signed to have lumpectomy..when at home I felt a need to find out more on the internet.I did masses of research and read many clinical trials etc at the same time as researching alternative methods

When Ilooked at the chemo drugs it was suggested I have I was horrified at the possibility of secondaries , Lymphodema  and with the drugs suggested there is a possibility of left ventricular heart damage and heart failure many other things all of which made me feel this was all negative (to me) as would reduce the quality of life for my future and would be constantly wondering if it had returned. Yes it does say that these are rare but even the common side effects where unpleasant or worse and would some times be permanent.

The oncologist said I would be having Adriamycin and cyclophosphamide with herceptin running concurrently for first 12 weeks .Then herceptin 3 weekly for the rest of the year.

First  think I found out was that both have negative effects on the heart and although this is monitored and treated if an event should happen it can also have long term effects not showing till later years.

Then while researching more I was told that this combination known as AC including Herceptin is not used in the Uk because of its high toxicity and intolerable side effect and death. !!!!!!!!!

I got a phone call , an appointment to start my chemo 26th Feb. although I had phoned the day after seeing the oncologist to not set up treatment plan. ? as I had arranged to see the consultant again .

I now have an appointment to see consultant again and told I have a new appointment to see oncologist which is good as I have a LOT of questions to ask.

So I will know more when I see them on 3rd March.

While all this has been going on I did a detox to Alkaline my body No sugar no knightshade veg etcand was ketosis for a week or so  but have fallen away when my grand children surprised me with a big chocolate cake for my 60th bithday. Bless them :-).and have had a few things since ie a biscuit or crisps coffee with honey etc.and feel guilty to my body for doing it .!!.

I have been using various supplements during this time and lots of organic veg etc.

I will post again after my appointment as no firm decision has been made yet as which way to go .I know which I would prefer to do..much healthier.

In the meantime I wish all you ladies out there good luck with your treatments and Love Light and well being in the process.

Stay strong and HAPPY.xxx

Hi DEM

Thank you so much for your input.  Here's where research is providing you with the necessary information to question their choice of a treatment.  We all hope that whatever treatment is chosen for us will do the trick BUT we should also be told the risks and long term side effect.  From your discussion I assume you are not in the UK so continue researching so it gives you potential questions to ask on their choice of treatment, possibly even coming up with something yourself.  I've looked up your two chemo items.  Sheesh!!!! - and people think I'm somewhat 'du lally' for not undergoing the standard treatment!

I will very very interested in your reply when you report back after your meeting with the consultant and oncologist on 3 March.

Wishing you all the very best, from someone

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

Hi DEM

A very interesting post. Please let us know how you get on speaking to oncologist. You have done some amazing research.

best wishes Squeaky

Hello Ladies Im so pleased to hear from you ,at last I have someone to chat to over this BC stuff , I keep going from positive to down in the dumps and driving myself crazy going round in circles in my head over and over again.. Ahhhhh. Like you forget for a while and BANG its still here..

After surgery I have been left with a very small tight inverted breast a full half gone and wish I had been given a choice ,but I just signed the paper while still in shock !!!!. 10 mins before going to theater I was told I could have a skin sparing mastectomy...and she could talk to the surgeon and stop the surgery...having waited 3 hours and got myself into a state totally anxious ,I went ahead as they came for me to go down.

This is my reason for going back to see consultant as was told I could have it done after treatment ( should I survive what looks like a very dangerous treatment !!!!??. anyway I would like it doing now as it feels like a ticking time bomb on my chest as there are still fibroids and cycts in there and who knows if there are any more DCIS  as there was one in the main cancer lump.

I was at the clinic in Sept 2013 when my GP found a tiny lump but the clinic didnt do a mamagram !!!!!?
 didnt think there was a lump.. and I guess this is why I have been rushed through the system (conveyer  belt ) ..Ie . GP Friday 2nd Jan ..phone call monday  5th 10.30 am to be at the clinic 8am the 7th.. Mamagram,US ,Biopsy (anesthetic hadnt had time to work ,horrendous pain nearly fainted). Results stage 1 grade 1 .. op on 22 nd . now a stage 1 grade 3...  Basically the consultant new well a BIG mistake was made. he said this is a new lump and thinks its a fibroid.. ??? Yea rite !!!!.

Soo on the grounds of this and him saying when I complained of having been given no information he apologised not seen the person behind the cancer... AHHHH again.I want this breast tissue gone NOW..before any other treatment...which I am terrified of after learning about the one suggested...no chance.. I want to live !!!!.

To be continued >>

Thanks for being there Ladies I need to be able to just say this stuff..

Waiting till the 3rd now !!!!

Love Lite and healing to you all.XX

Hi All

DEM - you had your appointment on 3 March.  How did it go?

On my front I had a call from some department at Kingston Hospital.  They had a slot for 9.25am on 10 March and would I be interested in taking it.  Said Yes and would they be following up with an appointment letter.  They told me this had been arranged by my GP.  Haven't received an appointment letter but have had two letters from the Immunology Clinic, Outpatients, requiring me to make an appointment.  Maybe the appointment letter will come tomorrow (Monday) and I will find out what appointment, where, I have agreed to!  Could also check with GP practice to see what has been put on my notes.  Post comes mid morning so I could check with GP in the interim and telephone the Immunology Clinic to see if the 9.25am slot is with them.  Got to admit I didn't think the 9.25am slot was with the Immunology Clinic - I thought it was with some other clinic but was so busy writing the date and time down, at the time, I did not ask the clinic/department again.

Gotta admit that I am pleasantly surprised and pleased with the care I am being given by the NHS even though I haven't gone down the conventional route for breast cancer.  It is only with being diagnosed with breast cancer that the other things (wrong with me) have come to light.  One discussion said that good can come out of a cancer diagnosis - how true that is! 

Report from the 2nd Thermogram - "I am pleased to note that your report indicated that there are no significant thermal changes", "....both breasts are considered to be stable with no current thermal findings to suggest significant contagious spread of disease in the right breast".  YAHOO.  Next thermogram on 14 July.

Love and hugs to everyone, from someone

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

Hello I read your mail and sent a reply but has not shown on the thread ..wonder did  you got it ?.

I have today made the phone call to accept the chemo. Soooooooooooooo very scared of putting the poison in my body , If I was not HER2+ I wouldnt ever of thought of doing it.

Keep up with the fight.

Regards

Diane.

I wonder if Iam sending this as I have not heard from anyone who posted replys before even though I sent an email .

Diane