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prognosis

12 REPLIES 12
Butterfly318
Member

Re: prognosis

Hi Christina

 

Good to hear things are going well for you.  I had my surgery 4/8/2014 and things going wel but slow to heal.

 

Take Care and thinking of you as you plan exciting travels. 

 

14/09/2014 i am off to London for the day to vsit the Tower Moat (with all the Poppy's) and then to the Palace. Hubby taking me and his Mum so should be a lovely day.  (She loves going anywhere with her boy)..

 

Take Care   Gilly x

 

 

Nel
Member

Re: prognosis

So happy for you. I have stage two cancer had lumpectomy with SenitolNodeBiopsy on 4th August.  Two small tumours found in lymphnode so am having to have  chemo and radiotherapy.  Hearing your story has helped me be a bit more positive. Hope you can now start looking for a much needed holiday and keep us updated with you story. Love Nel

Christina0
Member

Re: prognosis

Hi Gilly

 

Thank you for your wise words.

 

Mastectomy a success, whole tumour removed along with margins and lymph nodes clear 🙂  To say I am pleased is a massive understatement!!  I am to have a couple of more weeks rest, then resume my FECT,  (4 cycles still to go), then another short break,then 3 weeks radiotherapy just to double and triple check every cell has gone.

 

I am absolutely thrilled. still a bit to go, but with the very positive news, and that my consultant doesnt expect to see me until next year!!  he confirmed I will be free to travel.  I have decided not to have reconstruction, and will stick with the prosthesis once it is fitted. 

 

I am still on a high from getting the results on Monday 🙂

Butterfly318
Member

Re: prognosis

Evening Christina

 

Great news the surgery is sooner.  If only we had a crystal ball....  If i had my time again i would opt for total mastectomy followed by Chemotherapy followed by Radiotherapy.  Go away and live my life for a year or two then go back for reconstruction.  However what i had was Neo Adjuvant Chemo FecT to shrink a 6.5 cm invasive ductal tumour to right breast.  I found a small lump on outside of my breast however it turned out to be something much bigger.  Had Mammogram 12 months previous, showed nothing. 

 

Following FEC i had breast MRI and ultrasound which showed a possbile slight reduction ?? but the lump has softened.  Consultant recomended that i continued with taxol, she was really disappointed..... but actually it also did its job in mopping up any stray cells and its additional role of preventing recurrance. (neither of which can we know just how good a job it has done til many years down the line) 

 

Path report following surgery indicated 4.3cm tumour - so minimal response to Chemotherapy...

 

I am currently 20 months on from Chemo and 4 August going for Surgery to replace expander with silicone and   lift / reduce left side to match. I had three surgeries/  1 was Mastopexy which removed 1/3 of my breast and re modelled a lovely c/d cup but did not get clear margins,  further re excision which had a 5.5mm area of concern so mastectomy which had only one 2mm cluster of cells and clear margins which really set my mind at rest.

 

So Christina my tumour also 'misbehaved' in fact the consultant was so disappointed i felt sorry for her.  But i am doing good now.

 

I know it is scary and anxiety provoking when you're in the middle of treatment and things not going quite to plan but researching really is a bad idea......(we all do it - particularly the Nurses amongst us).

None of that research is based on you......

 

I'll be thinking of you as you go for your surgery.  You have some fabulous travels planned.

 

Take Care   Gilly x

Christina0
Member

Re: prognosis

Hello ladies

 

My surgery has been moved forward to Monday the 11th August, when I will have a mastectomy.  Still feeling positive - I have to go in on the 11th for dye injection, then mastectomy will be on 12th August.

 

To top it all off, I had an appointment with orthapaedics on Friday, who have advised I need keyhole surgery on both my shoulders, so 2014 not been the best year I have ever had - but I am most definately looking forward to a healthy 2015 when I go away on my Caribbean holiday in June, then out to Texas to see my son and his wife, and my beautiful little grandson 🙂

Christina0
Member

Re: prognosis

Hi ladies

 

Chemo definately not working 😞 I am provisionally booked for mastectomy on 15th August.  I am also to see the consultant who saw me at the start of my journey, and he may decide to do the surgery himself, which would be a different hospital 25 miles away, BUT it could be a few days before the 15th Aug, so I would definately go with him if its an earlier surgery date.

 

You have to be 28 days chemo free before surgery, so this is my 28th day today, so I am good to go any time now incase any cancellations turn up.

 

Not the best situation, but I am making the most of it, and had a lovely weekend spent with friends and our ponies, they are a total tonic for me 😄

Athens
Member

Re: prognosis

Hi Christina

I hope you get a date ASAP for your mastectomy. You should push. I regret not pushing hard enough for an early op date, though I did towards the end when I was told on the day I finally was admitted for the op that there would be another two week delay and sent home, I kicked up a fuss and was done 5 days later. My husband was told 4 weeks ago he was bring red flagged for an urgent op (including biopsy for possible cancer) after waiting neatly a year, and would have it within 2 weeks, then was told it would be end August. He telephoned the consultants secretary as he had been promised it within 2 weeks (after neatly a year of extreme pain) and though the consultant would not talk to him, my husband threatened to start making telephone calls to others in authority/influence (he does not know anyone with authority/influence) - next thing he had a tel call telling him the op would be in a week's time. So in our cases it paid to be awkward and insist on op dates asap.

Athens
Donnaandfamily
Member

Re: prognosis

Hi Christina

sorry to hear  your news was not what you wanted...........keep positive.......

I don't want to pry but could you afford to go private for op ASAP...cost about £6k ?

They do credit cards and repayment if not....just a thought?

I hope they get their act together quickly ........ best wishes Donna

Christina0
Member

Re: prognosis

Things did NOT go well I'm afraid,  FEC treatment not working. 😞  I can actually feel the tumour now, and it is about the size of an orange. 6 weeks ago, it was the size of a golf ball.

 

My consultant said he will meet with my multi disciplinary team tomorrow morning to decide whether I should move for mastectomy (provisionally booked in for 15th Aug unless a cancellation comes up), or to try a more aggressive chemotherapy.  I told him all along, i have been told how aggressive my cancer is, and how it is not behaving how it should - who's to say the new chemo will work?

 

I made it VERY clear - I want a mastectomy - NOW! Then we can discuss 4 months of adjuvent chemotherapy, followed by 1 month of daily radiotherapy.

 

I am still staying positive, looking forward to getting rid of this cancer once and for all!! I have already booked a Caribbean holiday for next June so my other half and I can celebrate me being cancer free in early 2015!! BOG OFF CANCER - YOU AINT WELCOME HERE!!!

Donnaandfamily
Member

Re: prognosis

Hi Christina

I hope tomorrow brings some good news.....sending you best wishes xxx

Christina0
Member

Re: prognosis

Thanks Donna,

 

I didnt get my 3rd chemo yesterday 😞  I have had pain in the affected breast for 4 days now, and the nipple discharge has started again, and for the first time, I can actually feel the lump, I couldnt feel it previously because it was so deep within the breast.

 

I am to see my consultant tomorrow to see what the next step should be. 

 

I will definately not be doing any more internet searching thats for sure!

 

 

Donnaandfamily
Member

Re: prognosis

Hi Christina

I am so sorry to hear you researched and have now lost confidence...sometimes information is a bad thing.......and it does not cover every single person ...........I did the same and wished I hadn't.....now I don't read...its my journey and i take one day at a time.....

 

My aunt.......Slightly different to yours in that it was not attached to her chest wall.....but she had to have 3 different types of chemo until one worked and shrunk her tumour sufficiently (triple negative like you) and she then had lumpectomy followed by radiotherapy....... 8 years ago.......

 

Try to keep positive......... I am sure they will have something to attack this........I know its hard ......sending you lots of best wishes xxx
.

Christina0
Member

prognosis

Hello all,

 

I have invasive ductal carcinoma grade 3, triple negative receptor.  I have been totally upbeat and optimistic since starting my journey with FEC-T, in June.  I am to have my 3rd lot of chemo on Monday coming, and apart from losing all my hair, side effects have been minimal, thankfully. 

 

I tried wearing my wig - it's just too hot, so I tried scarves/bandanas - they are just not 'me', so I have gone commando - shaved head, totally bald!

 

I stupidly started researching my diagnosis today online, and truly wish I hadn't. I wish I could turn the clock back, where I had confidence, I have doubt now. 

 

Today is the first day I have felt afraid for my future.  My tumor is big and attached to my chest wall, so we are trying chemo first in an effort to shrink it and hopefully can get away with a lumpectomy, but my consultant warned me, my tumor is not behaving how it should, so mastectomy is not out of the question.

 

I am to have an MRI scan on 8th August to see if the tumor is responding to chemo - if not, I will have a mastectomy straight away.  If I cant have normal cancer drugs, is that it? Is there nothing else can be done?  Will I carry on with chemo after op?   Has anyone else had this happen, where the chemo wasnt working?    Can the stage of the cancer only be determined after the tumor is removed? I have so many questions now, and not due to see the oncologist until the 25th August.

 

Any info greatfully appreciated x