Forum Discussion
The wait is frustrating and worrying. And so many questions!
Hello, I have been recently diagnosed and it has been a whirlwind of events. I had a lump on my left breast which I was confident was just a fibroadenoma but went to have it checked out anyway. The GP sent me off for a mammogram and ultrasound, then core biopsies of said lump. Whilst having the core biopsies the radiologist asked if I had noticed any changes in my right breast. I had not, neither had the GP. He said there was a lump there too and should be biopsied but I would need a separate referral. I booked an appointment for the following week. In the meantime I went back to the GP and the results from the scans and biopsies confirmed a fibroadenoma in my left breast and that the lump in the right was probably the same. We decided to go ahead with the biopsies. feeling confident it was benign I had no concerns abut the results. Until, taking my daughter to her first day of high school I get a call from my GP reception suggesting I bring someone to the appointment with me! I felt my world cave in. Thank goodness my Mum was with me. I had breast cancer.
Everything happened so fast initially. I was diagnosed on the Tuesday, saw the breast surgeon specialist that Thursday and had surgery on the Monday! Now I'm home 1.5 weeks after surgery, relieved that the cancer has been removed but frustrated waiting on a treatment plan. It was stage II, ER+ and PR+, and node positive. Do I opt for chemo (there is no way I can afford the oncotype DX testing)? Do I use the cold cap thingy or just shave (maybe I'll dye it pink too!)? What about dose densing (more chemo over shorter time so I can get back to normal work sooner)? Radiotherapy? Hormone therapy? The waiting is frustrating, I just want this all to be over and done with. I'm worried that I won't have enough sick leave left for those days I may need off during treatment. How will I provide for and support my darling daughter? Will I be able to pay my mortgage and other bills? How much will the treatment cost?
There is so much going through my head right now... :'( :s :/
Sorry I went on and on... Just needed to get it out. <3
Everything happened so fast initially. I was diagnosed on the Tuesday, saw the breast surgeon specialist that Thursday and had surgery on the Monday! Now I'm home 1.5 weeks after surgery, relieved that the cancer has been removed but frustrated waiting on a treatment plan. It was stage II, ER+ and PR+, and node positive. Do I opt for chemo (there is no way I can afford the oncotype DX testing)? Do I use the cold cap thingy or just shave (maybe I'll dye it pink too!)? What about dose densing (more chemo over shorter time so I can get back to normal work sooner)? Radiotherapy? Hormone therapy? The waiting is frustrating, I just want this all to be over and done with. I'm worried that I won't have enough sick leave left for those days I may need off during treatment. How will I provide for and support my darling daughter? Will I be able to pay my mortgage and other bills? How much will the treatment cost?
There is so much going through my head right now... :'( :s :/
Sorry I went on and on... Just needed to get it out. <3
54 Replies
- Omg, at work! That's very well done. Good on you @KatWat
- First treatment has gone well. I couldn’t tolerate the cold cap. Lasted 45mins but felt like I was going to have a panic attack, it was awful. Feeling good today and am at work. Thank you to everyone for your ongoing support. ❤️
- @sister Good on him!
- Have come back from mine. Got a bit of a fright in the dark with this big bloke coming towards me all dressed in black - my husband decided to come along too!
- How did you go yesterday @KatWat? Thinking of you. K
- @KatWat Definitely do that every day. It has been proven to help with fatigue and side effects. On TC some days it's the only thing I do, and it gives you a sense of achievement. About to go for mine!
- Oh my lord, ladies! such different experiences. I guess I need to go in with no expectations.
Off for a walk now...
And thank you <3 - @KatWat I had a different regime first being FEC also known as the red devil, there are other combinations like this TC may be the same. 5 fluorouracil (also known as 5FU) epirubicin. cyclophosphamide, that was for 4 infusions 3 weekly and a very hard hitting drug, I didnt cope with it and was in hospital for infusion 2-4 for 2 days to try help. I have Paclitaxel which is Taxol and you're having Docetaxel which is equivalent but different. Generally on your 1st regime cold capping is not successful if you ask majority of people, it depends on your chemo combo. My Oncologist did not suggest it on FEC he said it wouldnt work. If I were having just Taxol he said it may be somewhat. I was too sick turned out to even bother. The other thing is too, if you search here on BCNA on docetaxel there are some threads on this particularly.
Everyone is so different, there are heaps of women who worked through the whole thing with minimum side effects. I went into it all geared up and planned my work etc., and unfortunately went pear shape but the end of FEC I had to cease work for 3 months. I work in Education. So always to be open minded of you wont be in control, once I let go and just gave myself time to deal with it without the pressure of work I could cope ok. I couldnt afford it, I lost thousands upon thousands of dollars in lost income and my own savings. I did have income protection however backdated and was on it for 2yrs but I went back immediately 3 days and they paid 75% of the 2 days but taxed heavily uuugh. Financially has ruined me as Im a single parent and need to work. I cannot recoup what I have lost.
Having said that, its been a long road to recovery and I had to learn to walk again, I spent a year with an exercise physiologist which was imperative. I am back at work 5 days this year in a new School and it is incredibly hard I admit, my Oncologist said Id never be able to work full time but I have no choice. Im 2.5 years post treatment but the pain and fatigue are still tough but I manage most days without panadol osteo now.
All the best, I think you'll blitz it! and no such thing as be positive as a Psychologist at rehab explained, its about handling what comes the same way you handle every challenge in your life, changing who you are doesnt help and only adds stress putting on a constant happy face for others. Im quite positive anyway, but admit chemo was tough for me so I learnt me first....for the first time in my life. :) Nurture you along the way thats all that matters...nothing and nobody else!
xx M - @katwat I'm on slight different chemo regime - Doxyrubicin and Cyclophosmamide but similar effects (then I go onto Paclytaxol. I was given the option of cold caps (and boy, are they cold). I had some thinning at the very end of the first cycle but at this stage, not enough to warrant stopping, so continued with it for my second treatment yesterday. I too am doing it for the kids but they are now on board with me stopping the caps if it doesn't look like working (I've charged my girls with learning how to tie great scarves if I go bald) For me, the actual treatment is about 4 hours with the caps (the cap adds about 1 3/4 hours to it). They set it up and get it working, then start the pre-meds, administer the chemo drugs, then leave the cap on for another 1 1/2 hours once I've been disconnected from the drip. Of course, there's time spent there prior having bloods taken and meeting with the onc.
First treatment was definitely the worst as I suffered a lot from nausea and severe fatigue. I was pretty unwell for the first 7 days. Day 8 was the turning point for me - not perfect but I could rejoin the living. The onc has already tweaked the premeds and given me better take home drugs so, so far I'm feeling better than I was last time and hoping that continues. And I'm not worried about ringing up anytime and saying that I need something stronger/different.
Try to do some light exercise such as go for a short walk, even if it's the last thing you feel like doing. It helps the body recover (and I believe push the chemo drugs out quicker). As you build up the exercise to moderately/high, there is evidence that you help protect your heart from the drugs. But don't overdue things and I would suggest if it's anything other than walking, you get the okay from your onc.
Good luck on Monday! - @KatWat I won't pretend it's a walk in the park but I have not had anything too severe happen yet. Except perhaps the fatigue, which my oncologist says I seem to get at the severe end of the normal scale.
I've had a number of side effects. I can detail what I've experienced if you'd really like me to, but we're all different and have such varied reactions, so I'm not sure how useful that would be.
If you have things happen along the way let me know and we can swap notes and whinge!
I tried the cold cap but it didn't work for me. It does for many people though. I was trying to minimise the visual impact for my kids and don't regret trying. When I realised it was futile I went to the local hipster barber & got them to buzz it all off. It was confronting but not upsetting for me. Turns out my head is a good shape, people tell me I look great. It feels amazing in the shower! I've gone with those small close fitting hats (lots of different colours - wardrobe options!) & small bandana type things.
My pubes have mostly disappeared and I barely need to shave my legs or armpits. Done it once this year I think. Eyelashes & eyebrows are thinning but hanging in so far.
Having the cold cap meant I was in hospital for six hours. Now it's three. It's your call, a very personal decision. I look forward to hearing what you choose!
Good luck on Monday. Try not to be too scared or nervous. It is what it is and you're giving yourself the best chance of ridding your body of this wetched disease.
Oh and if someone says 'how can I help?' ask them to give you one of these:
http://kitforcancer.com
A friend gave one to me and it's been great. Kate xox
