Hi, I'm a triple negative BC. Diagnosed late September '13, single RH mastectomy on 18th October, no nodes involved. Large 5.6cm tumour grade 3. I haven't seen the oncologist yet because he is booked out so having to wait till 20th Nov.Cas (on the Gold Coast)

Hi Cas Very sound advice from Gillian. I was diagnosed on 1/8 this year. I had a LHS lumpectomy for a 9mm Stage 3 before being told I was TNBC - so more surgery may follow. I am due to have my 3rd chemo session on 25/11 with chemo to finish end of Jan 2014 followed by a 2 wk overseas trip then 6 weeks of radiotherapy. I am in the fortunate position that I have enough leave that I can take time off work and I don't have young children to care for. How you react to chemo will be different to how others react and many women continue to get on with their lives whilst undergoing treatment and you'd never know they were undergoing treatment. I have really good days and days when I'm less than ordinary! Be kind to yourself and let others help you when you need help and you will get through this. All the best - love smead xxx

Hi cas, Try not to be overwhelmed by your diognosis you metioned that nodes were clear this is a good sign. The grade 3 means it grows fast, the positive is that TNBC responds well to Chemo. I have just completed my 6th and last cycle of Chemo and other that being a little more tired than usual and not as much energy as I would like. I am doing fairly well. Start Radio 9th Dec, I was diognosed 13th May and had lumpectomy 13th June and Drainage of surgical site due to a haematoma quick surgery 27th June and started chemo (TAC) 17th July. If you access the internet look for TN sites. All the best just take it one day at a time.

Thanks everyone. I'm not concerned too much. This is my second cancer, I had bowel cancer in 1982 so I'm a little bit of an old hand. I didn't have chemotherapy with that cancer.This one came up very quickly and was operated on even more quickly. I saw the surgeon on Monday night, I was having a mastectomy on the Friday night. Thankfully I have very good health insurance so it hasn't been horrendously expensive. I am also a student on Austudy so most of the out of hospital expenses have been bulk billed including radiology and oncology appointments. My chemo will be done in a private hospital so my insurance covers it.Yes the waiting is draining but I am a student right at the very end of my undergraduate degree so I am busy busy all the time. I'm an off campus student and my degree finishes in February. I start my honours year on 26/2/14. I work one day per week as a bookkeeper and I'm hoping to be working in the uni next year as a mentor to 2nd and 3rd year undergrad students while I start my research. (journalism)Paula, I read that about the survival rates being higher for TNBC as well. I am hoping to be through chemotherapy in 3 months but I will have to take the advice of the oncologist on that. There will be no radiation thankfully, there is nothing left to irradiate.I've spent hours this morning choosing a wig and hats and fringes at the local Cancer Council and I am booked for Look Good Feel Better at the beginning of December so I'm prepared.Last night I did some preliminary research on chemotherapy drugs, how they administer them, what they are targetting, what the outcomes are etc. I'm not frightened, more ready to get into it and get it over with. My uni is very lenient but I am not going to stretch the friendship more than necessary so I say bring it on, get it over, move on. Cas :) (going shopping now for a scarf clip and also tiny alligator clips to make a cardigan clasp. I've given up with bras, so I wear a shirt over a singlet and I need a little chain so the shirt stays sitting well at the front)

I was so like you. Let's get it done!!! As you know had a recurrence and second time I was operated on even faster. I am such a worry wart, just wanted things to get going. Having said that it has taken me two years to organize a reconstruction. Some of that was out of my hands as the chemo,trashed my blood counts so badly that they took a while to recover. They wouldn't dare to be bad now, I drink that much green juice and every other couloir juice I have worn out my juicer LOL. I chuckle every time I read a braless post of yours. You go girl Paula ;)

Very new TNBC patient | BCNA Online Network

30 Replies

paulag
Member
12 years ago
Hi Cas, I think I was better prepared for the rest of the docetaxel. I had terrible trouble with fluid retention due to lymph node removal in my right arm pit. I just took pain killers as required and generally just do what you can and don't worry about what you can't. Everybody is different. Have you painted your nails a dark colour? I did this through my whole treatment and eventually I did lose my finger nails but the new ones had grown underneath first. Taste buds wee nonexistent for about two weeks aft each round. But, as I said, most ,of my issues were to do with fluid retention. I would take endone to sleep for a few days and had Panadeine forte every six hours through the whole time. Yes, basically just do it. But do pamper yourself too! Don't be afraid to ask me anything. I found I learnt the most from other women. And it was really positive to see someone who is a little way further down the track than yourself. As my lymphodema specialist says......This too will pass. Xxx
paulag
Member
12 years ago
Hi Cas, I too had the same chemo as you and found round 4 the one that knocked me for six. This is the first lot of docetaxel. I too cut my hair short. It started falling out exactly 14 days after my first chemo and I ended up shaving it 3 days after my second chemo. Couldn't stand it falling out everywhere and my scalp did hurt quite a bit. I finished chemo in January and rads in march. Hugs for you at this time. Paula xx
Casjsa
Member
12 years ago
Hi Jules,

You are so right and finding what and who works for you. I tried two surgeons and two oncologists and I'm even going to Pac Fair today to try the second of two wig shops lol

I'm still OK on the first round of chemo but I had one day where I really didn't feel 100% That was the day that my hair started falling out. I felt physically ill not mentally :) Headachy, eyes hurt, head felt like a huge bruise. I went and had my hair cut into a short bob and I'm not going to shave it off having spoken with another bc paitent who said the scalp pain passes in a few days. I am however going to look for a nicer wig than the one I borrowed from the Cancer Council today. I have my Bachelors graduation in August and I'm on campus in March so I'd like to look as normal as possible for both. More so because I don't want to frighten other students on campus than worrying about what I look like. This would have to be the worst year for not having hair for me lol. I'll have two graduations requiring photos and my son's 21st birthday requiring more photos. Oh well, it will be interesting anyway.

I'm on six rounds of chemotherapy at 3 weekly intervals. Three rounds of FEC and three rounds of Docetaxol. My oncologist seems to think I will do very well until the second last or last round where she says I will feel quite tired. That will be late February and mid March. Just in time for the start of my degree, sigh....... at least I will live to tell the tale.

I think I would like to do a PhD after 2014 if I can get the grades required from my honours year. I admit that I am naive about what is required for a PhD but I think I will understand more after this first year of research and I'll know if I have what it takes. I don't know whether I want to teach but I do like the chase of research :)

I have been and bought a wig this morning.

Cas xx
Julesdenis
Member
12 years ago
Hi Cas,

Thanks for the message and yes it would be great to catch up for a coffee and chat.

Yes I'm on campus at Griffith GC and love every minute of it. The staff have been great. (Guess it also helps when you're studying in the School of Psychology!!! :-) )

Will have my first consult with Marcus Mathos on 8 Jan re chemo but also have appointment with Michael Slancar on 24 Jan. I've learnt after going through this with my husband last year with lung cancer that it's all about me and if I'm not happy keep looking till you find someone who ticks almost all the boxes.

Had a brilliant surgeon who I have great confidence in (Danielle Ghusn) I don't think I could have found a more personable, caring surgeon, or someone who was happy to answer mine, my daughters, or my sisters questions if I tried.

Last drain was removed today and had CT of chest and pelvic region and bone density scan which all came back squeeky clean :-), so can now get on with Christmas without all that paraphenallia hanging around.

Glad to hear that you have managed to stay realatively ok during your first session of chemo. :-) What sort of plan do they have you on at the moment???

Ciao

Jules x
Casjsa
Member
12 years ago
Hi Jules,

I have the same attitude with my study. I'm 53, I'm in my last study period of a B. Communications (journalism major). I have studied for 4 years via OUA so there are 4 study periods in the year rather than 2 on campus semesters. I finish my degree on February 23, 2014. I start my honours year on campus on March 3, 2014 at Griffith Gold Coast (I'm at Arundel).

We might meet on campus next year? Are you on campus or off?

I'm not having too much difficulty studying, only the 3 days around chemo knock me and today is a little hard because of the huge headache I have which I am associating with my hair falling out at the moment. I'm not running a fever, I checked :)

I didn't go to Pacific Private after all for my chemo. It's a long story best forgotten. I'm going through Icon Health at the Premion Building. My oncologist is Dr Andrea Tazbirkova and a nicer, more caring oncologist I couldn't hope to find. Love her to bits. She works with Dr Slancar. This is a private day hospital on the 9th floor of a medical building almost entirely made up of cancer services. The view is spectacular and awesome to watch while you're having chemo.

Keep in contact please. I've just met another BC lady, same age as us from Labrador. She is a writer (books). We might be able to have our own little coffee group.

Cas x
Julesdenis
Member
12 years ago
Hi Cas I was diagnosed with BC on 21 Nov '13 and had right breast mastectomy on 10 Dec. I had 3 lymph nodes removed and all were clear. Today I met with my surgeon and she confirmed I have TNBC. I have sailed through the surgery and I'm hoping to do the same with chemo. I to will be having my treatment at pacific private. I will meet the oncologist on 8 Jan to find out what is in stall for me. At this point in time I'm feeling very upbeat and positive. I know there may be days where I might loose my way but I'm not going to let them get in my way now. I live in Tallai and am also studying. I've just finished my first year of psychology at Griffith and will hopefully be able to keep up and keep on studying during treatment as I don't want to drag my degree on for too long as I'm already 54. My family and friends have been brilliant and I feel extremely blessed to be surrounded by such beautiful caring people. You never know we might bump into each other at Pacific Private. Take care and let me know how you go with your chemo. Jules x
Maree1
Member
12 years ago
Well, I have a two year window frame with the understanding if i did not relapse then I would be okay. He said because of the low percentage he felt that I would not benefit my taking tamoxifen. I reckon its to cover their butt as to why I was offered second time around. And yet while giving me the info he gave me and my daughter the impression it was not worth it betweeen the lines.

I asked what would he do in my situation and he would not take it.

I see in America they give it to all breast cancer women as a standard procedure.

Thanks Smead for your input.

x Maree
smead
Member
12 years ago
Hi Maree would love to offer advice but can't. What benefit did your medical oncologist say you"d get from it, side effects etc. it sounds as if you are being offered some more insurance against reoccurrence - make sure you get lots of advice before dismissing tamoxifen. All the best loves smead xxx
Maree1
Member
12 years ago
Hello there ladies! I was diagnosed 23 March 2013 and within the seven months I have had neoadjuvant chemo (meaning chemo before surgery) 8 treatments altogether, then right breast mastectomy where 17 axillary nodes were removed. I now have appointment to have the radiotherapy plan put in place this thursday. At first I was told I did not need to take the drug, tamoxifen, as he said there would be very lil benefits in my case. Then I was called back as my Medical Oncologist got an second opinion and now has given me the opportunity if I wish to take it. I am border line Triple Neg with PR 2%- ER 3% staining.

I am thinking more along the line that I will decline the offer.

Anybody been in this situation you know of?

Look forward to a reply.

Maree North Queensland
Casjsa
Member
12 years ago
Hi Leanne, thanks so much for the lovely welcome. I haven't been to the oncologist yet because I've changed oncologists. So now my first appointment is Tuesday morning. I will know then what I'm in for chemotherapy wise and at least I'll have something to be working towards and through. All the sitting around is a bit hard but I have a lot of assignments to complete so I'm head down focusing on those for the moment.
Congratulations on 1 year. So what? You have another 49 to go? :)

Much adoration for you and others who continue to help the newbies.

Cas xx