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Hi,
My name's Jo and I was born in 1979. That means I'll turn 33 this year (oh dear!). I was 25 years old when I was diagnosed in May 2005 with a 25mm triple negative grade 3 ductal medullary breast cancer with 1/14 nodes positive.
If you have time, I'll take you back to the beginning of my cancer journey....
In July 2004 I started a traineeship in business (just before my 25th birthday) with a state government department. I was given the important task of 'fax chick' and yah it was as glamourous as it sounded, my sole job was to fax stuff, and hand out the faxes that came in *sigh* I'd given up my job as a medical receptionist for this!! I learned to live with the job bit, and made some wonderful friends for life at this job. My world was perfect until....
December 2004 I found a lump in my left breast, I was shaving my armpits and bumped the side of my breast with my hand and felt a rather large lump. OMG! I wrapped a towel around myself and ran screaming through the house until I found Dan out in the front garden. I managed to get him to understand that he had to come inside, and I showed him my large lump. We looked at each other for a moment, before I burst out crying again and he managed to calm me down and told me not to worry until we get test results...
It took a week and a half before I could get into have a scan - I found myeslf going to radiology at Armadale hospital which is MILES away from home just to get a scan - I mean, we're talking the week before christmas here there were no non-urgent appointments available, so I took what I could get...I had the ultrasound and from the report it said that they were pretty sure my lump was a 'Fibroadenoma' especially considering my age, but further testing via needle biopsy should be considered even though risk of breast cancer is low. My GP did the right thing and DID refer me for the needle biopsy, but the sheer thought of a needle going into my breast was petrifying so I thought 'oh the scan is clear I'll just live with the lump'.
Fast foward until February 2005. After the hype of Christmas has died down, I have decided I'll be brave and have my lump removed - its ugly and I could see it because it was quite big. So vanity took over, I saw my GP and was referred to teh nicest surgeon - I didn't realise at the time his specialty was a 'colorectal surgeon' haha I can laugh at it now, but didn't realise I was seeing a 'BUM' doctor about my boobs! No wonder he was keen to operate on me :)
Anyway, I saw the specialist, waited the 6 weeks to be operated on at Bentley hospital as a public patient and had my day surgery.
The day of the day surgery is a Thursday, its now the end of April/beginning of May 2005. I attend day surgery, get prepped and in I go, was just supposed to be a 10minute surgery - he cuts - scoops out offending lump, and sews me back up....
I wake up in the recovery room of the day surgery, and there's my surgeon sitting at the end of the bed. He was so friendly and he was stroking my ankles (in a friendly not creepy way) as his kind eyes that showed sadness looked into mine, he said 'the news isn't good about your lump, you should get your partner in here and we can talk some more, I have to go and fix this next guy but I'll be back soon'. I of course freaked out, Dan was called in and we then got told that my lump was suspected as a cancer and the results have been rushed so I'm to meet Dr in his rooms on Monday for the results.
Monday comes after I have a massive freak out over the weekend. I'm told the suspect lump that I'd found previously under my armpit that hurt was a lymph node that needed removal but that Dr couldn't take it as I'd not given permission for that surgery (stupid red tape!). So I was first on the list Tuesday morning to have the axillary clearance and also Dr now had to clear the margins from where the original cancer lump was.
I go in for surgery on the Tuesday morning, the nurse who came to check me in was looking for a 75 yr old lady (read the 2 as a 7 obviously), and she seemed super surprised when I answered as she called my name. I got checked in, prepped for surgery and whilst i was waiting I had a massive panic attack. A four day stay in hospital with a drain this time, and I was allowed to go home. The drain stayed in overnight and I had to return on the saturday for its removal.
My surgical scar looks like the shape of a S. I always say that my surgeon who's surname started with a S carved his name in me hehe :) I had no complications with the surgery and was sent straight to RPH Medical Oncology.
This is where my journey at Royal Perth Hospital begins. I waited in the waiting room at Medical Oncology. I still couldn't understand what I was doing there and how come 'I' needed an Oncologist. In my mind I'd had the offending lump removed, I didn't even feel sick, I was fine!
I don't remember much about my visit to the Oncologist, I do remember him saying 'You have cancer' and i thought, 'no I don't it was removed'. He was strange, he smiled seemingly innapropriately as though someone had told him to attempt to be more personable. He was a very obviously intelligent person, but who lacked 'people skills', hah lets face it, he lacked a personality! I was so upset that this was my doctor, and disappointed about my diagnosis, i sought refuge at my GPs office. Desperate to get another Oncologist I had her ring the hospital and try to get me re-referred to someone else. This didn't work, so she spoke to my Oncologist, as it turns out she knew him personally and wasn't at all surprised I didn't like him....She told him I didn't like him over the phone whilst I was in the room! Haha!
I kept mr personalityless Oncologist as I was assured by several Doctor friends of mine that he was 'the best' , and whilst he didn't have a good personality he didn't need to, he just had to be good at what he did and I was told he was. So it appears, I had cancer, and I was going to have chemotherapy... OMG!
Chemo number 1. This has to be one of the most traumatic days of my life. Of course I couldnt sleep the night before. What is this chemotherapy and how will it affect me? I still feel fine, I don;t feel sick, so why again do I need this?
Oh you want to give me that HUGE needle, where? Omg in the back of my hand - are u freaking nuts! Oh here goes, ouuuuuuuuuch! Oh you're not in and u need another go OMG ouuuuuuuuch! And then I see the people in the row of armchairs across from mine, having their chemo through a port...why wasn't I offfered one of those?
I was given soemthing in a drip over so-many-hours, and something red in a special syringe, and another special syringe but this one had to go in slowly by the nurse. I went for a pee and it was already red! The poison was inside me already, killing off this cancer that i was convinced I didn't have anymore. I just am not sure about all of this.
The chemotherapy regime I had was called FEC. 5FU, Epirubicin and Cyclophosphamide. Oh how I wished I hadn't googled those three words!
That night, i started to feel really weird... I'd not felt like this before. My head felt muffled, I was SO tired, I had a queasy tummy. I started vomiting, i started vomiting violently, my whole body was shaking as i was being sick. Oh no it wouldn't stop. Half an hour later I was still trying to be sick violently. Dan rang the number on the card for the special after hours number. They said to bring me straight into emergency. Note to self, never ride in the corvette when you're weak, cuz Dan had a hard time getting me out and into the wheelchair.
I was then jabbed with another needle, the doctor had to poke around to find a vein that didn't collapse. I was then offered a bed for the night unbeknown to me, it was in a shared room, full of OLD MEN!!
I was released some time in the afternoon the following day, after pleading with medical oncology who said if I didn't vomit again I could go home, well I did what I could to hold it in but unfortunately i vomited again, but I was insistant that I wanted to go home.
That night, my friend came to see me, I didn't realise bcause I slept for 4 hours solid on the lounge room couch whilst my friend sat beside me and ate MY serving of dinner haha with Dan and she waited as long as she could before she left and I didn't even realise I must have been so tired I slept thru it all!
My urine was still red :( And it continued for at least 48 hours after chemo. I believe the Epirubicin is to blame for this. It was quite distressing as I couldn't even go to the toilet to escape what was happening to me. There was no where I could go where I could hide and disappear for a while. To say I was overwhelmed at this point would be an understatement...
Chemo number 2
This time things were a little bit different. I think I almost wasn't going to get my chemo because my white cells were VERY low. Instead a new treatment was offered adn I was to have an injection into my tummy the day after chemo. Mum's an RN so she gladly accepted this as her special task. I was also keen to see my Oncologist who didn't seem the least bit worried by my previous reaction to the chemo, he instead insisted I had these three huge tablets. 1 was to be taken the day of chemotherapy and 1 the day after, and another one after that. They were the hugest tablets I'd ever seen omg! My anti nausea medicine was also adjusted from Maxalon to Stematil.
I'd also gotten smart, I'd come across some Emla numbing cream. Muhaha I was going to beat that horrible chemo nurse at her own game. I numbed up and needle number 2 went in wihtout a hitch!
I also still had my hair at chemo number 2, only just...
The nausea and vomiting was pretty bad for most of that week, and then its as if I stepped out of a fog and was miraculously better... strange! I'd then eat EVERYTHING in sight.
For those wondering, Chemo for me was ALWAYS on a monday. But by the time Friday came because I hadnt eaten, I also hadn't had a poo. And yes the constipation did add to my already sore tummy ache :(
Chemo 3,4,5 all were pretty much the same as number 2. Its the last chemo that I wanted to comment on.
Chemo treatment 6. The last and final. By now we've skipped to October 2005. I'd celebrated my 26th birthday in August. By August I had no hair, very little eyebrows and a brazillian I can thank the government and taxpayers for. Shortly after, a collegue of mine shaved his head and we had our photo taken. I'll never forget it :)
Back to the chemotherapy itself, I was by now well and truly fed up with the whole process. I'd been yelled at by the phlebotomist who took my blood cuz i made her nervous by telling her which vein to get the blood from... aparently....And I'd started to feel queasy. No not queasy, absolutely feral uh oh! I just wanted to go home, no more chemotherapy, I'll be fine I've had 5/6 surely that's fine...I was vomiting BEFORE I even got into see the doctor. He rolled his eyes at me and told me I could stop vomiting if I wanted... was he serious! He sighed and walked off leaving me sitting in the hall (cuz the waiting room was full) with a sick bag. Brilliant work doc!
So now chemotherapy is over. OMG! Its OVER, that was the END! What does any normal 26 yr old do? They have a party of course. I invited my collegues and friends and had a huge party celebrating THE END!
The next thing was radiotherapy. No time wasted I think it was 2 or 3 weeks break from chemotherapy. If I said I wasn't nervous about this I'd be lying. I had no idea what to expect, and had heard something about having tattoos... I didn't want tatoos!!
Oh how different the experience of radation oncology is! Friendly faces including the doctor who immediately made me feel at ease. He sent me off for a special x-ray for their planning and i had blu-tack in my scar - weird huh! Then the simulation came and that was weird having all these people in clothes and tehre I am with no top on! They were all very lovely though, and I hardly felt them do the tattos. I have three. Two I have *lost* amongst freckles but the one in the middle I wear proudly - its blue!
Radiotherapy for me was the easiest treatment. It is a HUGE commitment to go to hospital 5 days a week for 6 weeks...especially as I was still so VERY exhausted from the chemotherapy. Wow how the time flew by. My partner, best friend and Mum were all allowed in whilst they were lining me up for the treatment, and then got kicked out to watch me on the cctv whilst the beam was on. I think it was good for them as they were at least able to see what I was experiencing and helped them to feel though they were helping me and were included in the whole experience. My partner, being an engineer, was of course interested in the technology.
I didn't burn too badly, it was like having a bad sunburn. I used the cream they reccomended, and peeled a bit, and I really wasn't too bothered by the whole experience at all. In fact I felt a bit let down after the last one, the next day it felt a bit weird NOT going in for treatment!
Oh I nearly forgot to mention. I had to have physio before my radiotherapy to make sure I could lift my arm above my head, I was having troubles lifting it at all. And then one of my veins went thrombo from the chemo which makes having blood tests a real pleasure nowdays - NOT! If you ever get the chance to attend one of the Lymphodema talks that Chris does through the physio dept at RPH I thoroughly reccomend it, that girl nows her stuff!
This brings me to the conclusion of my treatment time at RPH. Its now almost christmas time 2005 and I'm DONE! DONE DONE DONE! I had started to grow some fuzz on my head that I could almost pretend was real hair. I didn't go without a hat though until February when I had about an inch all over.
I did self discharge from RPH Medical Oncology after my 2yr checkup. I now know a LOT more about the Triple negative breast cancer. Had I known then what I know now I'd not have done this and don't reccomend it, I should have been having constant surveillance. I'm now making plans to rectify this (thank you Glenys - see you on the 30th Aug!) So I know how some of you are feeling coming up to anniversary date... I am feeling that way now...nervous as hell they'll find something and it'll be ding ding round 2!
I also am in contact with Genetic Services WA who are testing me for the BRCA1 and BRCA2 gene fault. Will keep you all posted how this turns out.
I hope that gives you all some insight as to my treatment experiences and please do not hesitate to contact me if I can at all help you.
xx Jo
Dx May 2005 aged 25, Triple Negative, 25mmx18mmx20mm grade 3 invasive atypical medullary tumour, Axillary Clearance 1/15 lymph nodes positive (sentinal node only), Lumpectomy, Chemotherapy (FEC), Radiotherapy, LB only, now Mama to Patrick born 12/6/2013.
The Click Breast Care Nurse 
Dx May 2005 aged 25, Triple Negative, 25mmx18mmx20mm grade 3 invasive atypical medullary tumour, Axillary Clearance 1/15 lymph nodes positive (sentinal node only), Lumpectomy, Chemotherapy (FEC), Radiotherapy, LB only, now Mama to Patrick born 12/6/2013.
51YO married. DX: MARCH 2012,45mm HER2+ grade 3 IDC. Completed 1x TAC & 3x AC 18/6/2012. Upper RB Quadrantectomy 20/7/2012. Full axillary clearance (2/7 nodes) 10/8/2012. RB mastectomy 7/9/2012. Completed 10x Paclitaxel plus Herceptin 12/12/2012. 25x Rads finished 12/2/13. 
Herceptin finished 8/10/13 Prophylactic LB mastectomy shecduled for 18/11/13 
Dx May 2005 aged 25, Triple Negative, 25mmx18mmx20mm grade 3 invasive atypical medullary tumour, Axillary Clearance 1/15 lymph nodes positive (sentinal node only), Lumpectomy, Chemotherapy (FEC), Radiotherapy, LB only, now Mama to Patrick born 12/6/2013.
the Click Researcher 
41 yr old/ 2 gorgeous girls, very understanding husband! Diag Jan 12. Gde 3 Tumour, nodes clearance, Triple Neg. Finished chemo. Will be having left mast. in Aug followed by radio.
Dx May 2005 aged 25, Triple Negative, 25mmx18mmx20mm grade 3 invasive atypical medullary tumour, Axillary Clearance 1/15 lymph nodes positive (sentinal node only), Lumpectomy, Chemotherapy (FEC), Radiotherapy, LB only, now Mama to Patrick born 12/6/2013.
JoJo, I can only say "you are one strong, courageous woman" the following quote seems to sum up your courage and tenacity - "What lies behind us and what lies before us are tiny matters compared with what lies within us" Hugs from Cyn xx
This post was edited by Cynthia at September 6, 2012 10:16:48 AM WATime"the Click Researcher
