Scared of recurrence!!

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

Hi 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....

It's a hard road with no easy answers. Wishing you all the best with your decision. TNBC seems daunting but I read as much as I could and found I could get my head around the statistics better. All the best. Deb

I cann't believe its 12 months since my roller coaster ride began. My journey has been almost the same as yours and I have had all the same thoughts.I decided the girls had one and only one chance to let me down and if they blew it again, its a double mastectomy for me. I too could not stand the thought of chemo and feeling so miserable for so long.

All the best with your decision.

Mause

 

 

Hi Ladies,  

Thank you for all your messages.   I am encouraged by everyones stories.  I saw my onc today, and she was very helpful,  Ihelping me realise that no matter what the decision, it's the right one for me.   I am not so much concerened with dying from breast cancer, or survival rates.  For me it's the feeling of not wanting to do chemo again.  I don't want to see my kids see me go though that again.  That shit was tough.  Real tough.  They're only little and even though they were little troopers, I could see it was breaking their heart to see me so ill.   I can't put my family through that again. 

 

Thanks everyone for your messages, I will let you know ,my desicion!  xxxx

Hi Ladies,  

Thank you for all your messages.   I am encouraged by everyones stories.  I saw my onc today, and she was very helpful,  Ihelping me realise that no matter what the decision, it's the right one for me.   I am not so much concerened with dying from breast cancer, or survival rates.  For me it's the feeling of not wanting to do chemo again.  I don't want to see my kids see me go though that again.  That shit was tough.  Real tough.  They're only little and even though they were little troopers, I could see it was breaking their heart to see me so ill.   I can't put my family through that again. 

 

Thanks everyone for your messages, I will let you know ,my desicion!  xxxx

Hi Peta,

Yes I had the lumpectomy 1st off & had the genetic testing done with the same answer as you inconclusive....I also had the same terrifying thought day in day out even though they got clear margins & there was no spead to the nodes..

I decided before I went for radiation treatment to under go a double prophelactic bi-lateral mastectomy with diep-flap reconstruction which took 9 & a half hours but I think for my peace of mind it was definetly well worth it.  I am very happy with my new boobs & nipples tatooed & all....I still get anxious every 6 months when I go in for my check ups but 2 and a half years down the track I'm still going well & I try very hard  not to even think about the TNBC at all but every now & again it will pop back in to my head thinking No I'm not as healthy as I once was because I am living with cancer.........but when it's all said & done I am  really quite healthy apart from that.  :-)  Now all I have to contend with is my mood swings from the start of early menapause due to chemo!  If any one has any tips on mood swings due to the same thing I'd love to hear you opinion.

Love & Light,

Susan <3 xxx

Hi Peta,

Yes I had the lumpectomy 1st off & had the genetic testing done with the same answer as you inconclusive....I also had the same terrifying thought day in day out even though they got clear margins & there was no spead to the nodes..

I decided before I went for radiation treatment to under go a double prophelactic bi-lateral mastectomy with diep-flap reconstruction which took 9 & a half hours but I think for my peace of mind it was definetly well worth it.  I am very happy with my new boobs & nipples tatooed & all....I still get anxious every 6 months when I go in for my check ups but 2 and a half years down the track I'm still going well & I try very hard  not to even think about the TNBC at all but every now & again it will pop back in to my head thinking No I'm not as healthy as I once was because I am living with cancer.........but when it's all said & done I am  really quite healthy apart from that.  :-)  Now all I have to contend with is my mood swings from the start of early menapause due to chemo!  If any one has any tips on mood swings due to the same thing I'd love to hear you opinion.

Love & Light,

Susan <3 xxx

Yup. Alcohol and breast cancer. I may joke about the odd hangover but I've had 3 in 6 years. A bottle of wine can last months now -- not days. That evening wind down beer or glass of wine has a measurable impact on YOUR cancer stats.