Forum Discussion
6mnths to live
To cut a sad story short, battled and i thought i won. Was due for my 6mnth check up, but three weeks ago got a sore shoulder then lymphadema then a black red swollen chest on mastectomy scar. Arm has swollen to capacity wasnt draining. Barrage of tests pet scan last friday result yesterday. Massage lymphnode invasion tumours wrapped around nerves as pain is shocking. Told very aggressive, offered chemo more radiation and maybe i will see christmas. A wave of white knuckle terror. Sadness guilt shock and a million “what am i going to do” things tushed through my head. Im a very strong oositive person but at that moment i was a blithering mess. I never thought it wS going to get me. I really didnt. I was very vigilant in my approAch to everything. Came through chemo (heavy dose as triple neg and wAs very aggressive) did 16 rounds chemo. 25 radiations. mastectomy. Came through relatively well . Just getting my life back. We had to sell our home because of my cancer. Just moved in 4 weeks ago. Still unpacking for god sake. Finally decided to retire and live my life for me. Embraci g the new me and flourishing then wham. All done and dusted. I would love yo hear a ray of sunshine from someone. Has anyone beat the 6 mnth prediction with anything remotely similar. Ie. aggressive tumours, nodes etc i would love to hear from you. Thank you girls x
52 Replies
- Hi Me2,
so sorry to hear your rotten news- it’s so unfair.My old mum had aggressive liver cancer and was told she had 6 mths- she lived for 14 mths.A lady in my group had cancer spots everywhere and told she was terminal - that was 4 yrs ago,now she’s cancer free.Doctors don’t always get it right.Where there’s life,there’s hope.xx - Whereabouts do you live, @Me2 (just a town name will do ....) My husband had his chemo there in 2010 (75% if his cancer die within 5 years of surgery & he is still here) and I had my radiation at Port Macquarie just 2 months ago over 4 weeks .... they have the Rotary Lodge (at VERY reasonable prices, - heavily subsidised by IPTASS, plus your petrol costs reimbursed to get there.) It is attached to the Port Macquarie Base Hospital (a 50m walk from your room to your treatment) - and the chemo/rads are PUBLIC/free ...... it could well be worth looking into having any treatment there, if $$ are a factor.
The Rad Oncs there are lovely - Dr Hansen is mine (and my uke buddy who has Met BC) - she is so thoughtful for our treatment ......
I hope that you've got that lymphodema pain sorted ..... can you access the Marijauna Oil? It is supposed to be wonderful for all sorts of pain ..... I hope so! - Thank you triplenegmama, for your insights. Yes i believe us triple neg gals have definately drawn the shorter straw. So sorry for your recent diagnosis. Im having some quality of life while on the chemo. So much so the radiation oncologist suggests i hold off on more rads until i do more chemo. (So im in sydney 700kms from home) booked in accom for three weeks for radiation, now im heading home to have chemo, sydney trip for nothing. Its encouraging to hear that chemo is working but im exhausted from the trip. Oh well, it just proves there is absolutely no plan or routine with anything to do with cancer. It ruins everything.
- have you talked to the physio about using a lymphodema pump to manage your lymphodema, I bought one to use at home but you can hire them - for me much easier than having to go to town for treatment at the hospital and has reduced the pain in my arm
- go back through every super fund you have ever had and double check if you have any balance even if it only has $100 in it if it had any automatic insurance death cover put on it - you can claim it under terminal illness and you may be able to use that to fund the immunotherapy or help your family - I found a couple of old policies I hadn't used for years and it was over $300,000 that I really hadn't counted on - but ask your oncologist to apply under compassionate circumstances for access to the drug on a reduced rate. sending hugs!!!!
- Hi I've also had recurrence - so this is 3rd time for me with triple negative - they have told me now not able to be cured - hard to find a lot of positive stories with triple neg that has gone to mets and seems to be much more rapid progression than other forms of BC, have you looked at clinical trials? there are a number of new trials with combo's of immunotherapy with chemo or immunotherapy with radiation that are showing some promise with triple neg - mostly to buy more time not as a cure as such but with the new stuff you just never know when they are going to make that next breakthrough.
Dear @Me2, I am so sorry to hear your sad news.. all I can I say is stay positive, the mind is a very strong tool.. live, love, laugh... I can tell you my Mum, went on for a couple of years longer than predicted, So keep strong and fight. sending you much love xoMe2 said:To cut a sad story short, battled and i thought i won. Was due for my 6mnth check up, but three weeks ago got a sore shoulder then lymphadema then a black red swollen chest on mastectomy scar. Arm has swollen to capacity wasnt draining. Barrage of tests pet scan last friday result yesterday. Massage lymphnode invasion tumours wrapped around nerves as pain is shocking. Told very aggressive, offered chemo more radiation and maybe i will see christmas. A wave of white knuckle terror. Sadness guilt shock and a million “what am i going to do” things tushed through my head. Im a very strong oositive person but at that moment i was a blithering mess. I never thought it wS going to get me. I really didnt. I was very vigilant in my approAch to everything. Came through chemo (heavy dose as triple neg and wAs very aggressive) did 16 rounds chemo. 25 radiations. mastectomy. Came through relatively well . Just getting my life back. We had to sell our home because of my cancer. Just moved in 4 weeks ago. Still unpacking for god sake. Finally decided to retire and live my life for me. Embraci g the new me and flourishing then wham. All done and dusted. I would love yo hear a ray of sunshine from someone. Has anyone beat the 6 mnth prediction with anything remotely similar. Ie. aggressive tumours, nodes etc i would love to hear from you. Thank you girls x- I totally agree Eastmum. Thank you thank you thank you
- I totally agree Eastmum. Thank you thank you thank you
