Forum Discussion
Peta_Kaye
12 years agoMember
Scared of recurrence!!
HI there Ladies,
In March I had a lumpectomy and sentinal node biopsy for my grade 3 TNBC. Then 3 Rounds of FEC and 3 Docetaxol followed by 30 sessions of rads and BRCA testing.
The testing came back inconclusive, which I am aware is very common, but now I have this nagging fear, I am sure you all have it. Reccurrence rates are floating around in my head, day and night.
I can't help but keep hearing, aggressive ... aggressive.... aggressive. I now wish I had gone the bilateral mastectomy and reconstruction for my original plan.
Have any of you out there had a lumpectomy and treatment and then decided to go back for a mastectomy? Have any of you made it past the dreaded 5 year mark and gained the all clear?
23 Replies
- leanne_29Member
Hi Mause58 and all the wonderful ladies on this site. My diagnose was made on the 19th Nov 2012 which being 1 year ago was an emotional day for me and as Mause wrote, the start of a long journey. I had my tissue expanders removed and implants put in on 30th Oct and my next appt is in 6 months time so hoping up and on from now. Hoping everyone is as well as can be and Take care Love Leanne Xxx
Thanks Christie,
It's so great to hear about people that are years past treatment. I've found info on the UK web site that says they're now calling the first three years our highest risk period rather than the first five so you're nearly there!!
I'm 51 and I've already had a few close friends die of non-cancer related things, so I find the whole 'living under a cloud' concept much easier to deal with. Cancer is no more of a cloud to me than stroke or heart attack or any one of a number of other illnesses. I suppose it helps that I spend 20 years as a police officer and saw a lot of random, accidental and surprising death. I know I really could get hit by a bus! I dont' mean any of this to sound miserable, quite the opposite. At my age there are a lot of health risks to deal with and I don't like to give cancer more importance than it deserves.
- DazzaMemberYeah she said because I had zero response to chemo and I have lymphovascular invasion she was so rude I really don't know how I just sat quietly and listened to her ... I changed oncologist and the new one is more optimistic and he said we do a pet scan every 2 month to keep a close eye on things :) I truly believe that the doctors don't know what they r dealing with and they just try drugs on u ... The first oncologist said I'm her worst patient and she hasn't seen a tumour as bad as mine ... I don't think I'm that unique... And just to see a smile on my kids face I am ready to beat thins beast with everything.... I changed diet and I'm seeing a traditional Chinese doctor and I'm trying to exercise everyday even though it is hard at the moment because I'm doing radiation.... I have a friend in America and he is looking if he can help me to get into any trial over there ( he is a nephrologist and by the way my Husband and I are both doctors) and I came across this link the other day, check it out and I hope they can do something soon xx http://www.newsnet5.com/dpp/news/local_news/oh_lake/cleveland-clinic-conduc ts-clinical-trials-on-breast-cancer-vaccine
- SamzRustyMember
It's easy to say don't read into te stats, but when you throw inthe BRCA1 gene mutation that i DO have & that Peta MAY have, it does make you more aware of the numbers.
I'm extremly positive about where I'm sitting, but I'm real about it too. I have no doubt I'll hit the 5 year mark.
Sam xoxox
- NaturalBelMember
For years I have been explaining to people during my pharmacy assistant hours, that we are all really like cars.
For the first part of our life we are like a brand new sports car, we drive it around, thrash it, know we look good, and dont have too much go wrong. Then in the later, we are like second hand cars, we need lots of maintenance, and cant be left out side or mishandled as much. Well something like that.
Some poor bugga's have Diabetes from birth, some have arthritis early, really, I just was happy to have been healthy until I hit 46, and had my first speed hump turn up!
I am healthy still, no medication, and thats how I look at it. Obviously my immune system said "I've had enough!" and let me down, but other than than, I dont think about it now Ive had all the treatment.
Mentally I treat as being all over!
- NaturalBelMember
Well written, I appreciated this information, it does put it into perspective.
I dont get too caught up in stats either, as a triple neg. I was told my uncle who is way older than I am, had the same percentage of survival given to him, after all he went through - at his age! I felt a bit ripped off (smiling). But remind myself, no one has a crystal ball, and this is my individual situation and life, and there are no clones of me out their to compare stats with!
- NaturalBelMember
Just sayin "Great read"
- katedeMember
Hi Peta et al
I'm only a third of the way into my first series of chemo (TAC) after a mastectomy for three triple neg level III aggressive lumps with 35 lymph glands out and invasion into a node and the blood system. Next year I'll have five weeks daily radio. My surgeon had originally suggested lumpectomy and recon with chemo following - until early results came through & it had to change. I wasn't surprised, indeed I was surprised he suggested the lumpectomy - and I felt it gave me unfair hope at a time when I had already psyched myself into the mastectomy. I was surprised too how many lymph nodes they cut out (didn't know there were so many there!). I look forward to reading other comments from members, too, on the five years... at the moment for me it feels like a long way away, maybe too long. I don't think my family 'gets' any of this.
Your doctor gave you no hope at all! That's a terrible thing.
Of course there is hope. I'm in contact with a woman through facebook that has survived TNBC for several years. She now has mets in other parts of her body and she is still positive about her treatment. Life is so precious, and even though chemo is awful it is temporary.
Management of side effects is also improving all the time. Don't just put up with them. I've had three rounds of FEC and I'm about a third of the way through my 12 weeks of weekly paclitaxel. I've had no nausea, one mouth ulcer that I healed quickly with kenalog and difflam lozenges, no loss of appetite and really only some fatigue to contend with. I'm eating really well and concentrating on getting plenty of omega 3 in my food through grass fed organic meat and hemp/flax seed. The night sweats are annoying but manageable and, on the whole, I'm feeling pretty good.
I can't believe a doctor would give someone in your situation no hope. That's not only unkind but inaccurate. Plenty of women with a worse prognosis than you have gone on to beat this bitch. Good on you for staying positive and setting goals for your family. I hope you can walk back into that doctor's office one day and say to him, "Please don't ever, EVER, take away another person's hope!"
Meg
X
- DazzaMemberHi Peta, I am 34 years old and a mum for 2 gorgeous boys 4 and 7 . Same as u i was diagnosed in march i picked to do chemo before surgery and guess what after 4 FEC and 4 taxol i had lumpectomy only to find out that chemo didnt work at all and the lump i had grew from 3 cm to 7cm and 3 positives nodes. Then i had mastectomy and now i am doing radiation i need 25 treatments... Am i scared??? Of course yes.. Especially that mu doctor gave me no hope at all... At the beginning i was devastated i used to cry all the time and i beleive no kid should be raised without his parents...But u know what i told myself i am gonna enjoy my kids im not gonna let cancer change who i am., no one has an expiry date on his back and everything happen for a reason... I booked a holiday to disneyland next august when im feeling down i think i might not be around to go and enjoy it but when my kids talk about it i feel the excitment in their voice and i tell myself i have to be here for them... They are my inspiration!!! Be positive, positive people live longer... Enjoy your life do what makes u happy and dont worry because worrying too much is not gonna change the outcome....