Hi All, I have only just joined BCNA yesterday and am overwhelmed by the support you all provide to each other. I have a great support network around me, but no-one really understands how I am feeling. I am due to start chemo next week, and am really crapping myself. I have spent the past 2 days trying to decide is it really worth the risk of having chemo when it really does not guarantee that it wont come back. I was diagnosed end of November 2013, I had surgery on 18 December 2013 where a 37mm lump was removed, my sentinal biopsy tested positive, therefore my surgeon removed 12 nodes. My results since my surgery were somewhat positive where my margins were clear and all other 12 nodes tested clear. However because of the size of my lump and the fact that my sentinal node was positve my oncoclogist strongly reccomends i undergo 6 rounds of chemo, 6 weeks of radio, and then 10 years of hormone therapy. I have a 6 year old and a 17 month old, and they are the only reason why I feel I need to undero chemo so I can be around for them, but what quality life will this be? There's a lot of tension in the house and i dont know if we can survive this battle. Any suggestions/advise will be grateful...

Hi LucVia, I'm sorry you are going through this especially with such a young family. I worried about having chemo and if it was really worth it. I made the decision to go ahead because I didn't want to find out it had come back and regret I didn't do everything I could to rid myself of cancer the first time round. There is no guarantee it won't come back anyway, no matter what I do...but I'll have no regrets I didn't try. I've had one dose of chemo and due for my second dose this Friday . I have to say I have only had one day I felt unwell. I haven't slept as well as I would like but that's about the worst of it for me. I have tried to exercise everyday I can...usually a walk and sometimes a short run. I was wary of all the negative stories about chemo but can't really complain about my experience . Perhaps you will cope with it too. Take each day as it comes. My hair fell out and I shaved it completely ...to me it's only hair and will grow again. I know I'm waffling a bit but the bottom line is I found chemo not too bad but you have to do what is right for you with all the information you need to get your answer. It is the fear of the unknown that causes the tension. I'm sure there will be other ladies with far more wisdom than mine that will help you decide. Just be happy with your decision. Sue

I am a lot older than you,but when I was diagnosed,I was absolutely scared witless also!!!I was diagnosed on sep.2nd last year.I finished my chemo 3weeks ago.I never questioned chemo,because I would hate to be saying,"if only I had ". This network will be your lifeline,and the ladies on here will help you get through this.Chemotherapy,these days,is a lot different than it was years ago.They have medications to help with side effects,and I think you will find it is not as you think.I hope that others will jump on here and reassure you also.I thought that having chemo meant you were pretty much useless for a few months;laying around and being sick every day.It is not like that!!!For me,I was tired from days 5 to 10 after each round,and the second week you have to stay away from crowded places like shopping centres,because of the risk of infection.But you don't feel too bad the second week.Then the third week,you pretty much feel normal.Try not to feel scared.You can survive this,and your quality of life will be fine:)If you have any questions at all,make sure you put them here,and plenty of people will help you.I used this network in the beginning when I was sure my life was coming to an end( ;) ) and everything the ladies on here told me,was always right.Sending you a big hug. xoxoxRobyn.

Hi Lucia I've got a very similar story to yours minus the children. Diagnosed late November, R) Mastectomy early December with one of 2 sentinel nodes having isolated Cancer cells. No cancer in any of the other nodes of the full axillary clearance. I'm wondering on what basis you think the chemo can't guarantee the cancer won't come back? Did one of your doctor's say this. I'm a Speech Pathologist and I have too wondered how necessary the chemotherapy is and if I could just skip it. I guess I really trust my surgeon and my oncologist who both specialise in breast cancer and I haven't gone searching for information about the necessity/effectiveness of chemotherapy. I guess I've also been fortunate to speak to women who managed their chemotherapy very well. One turned out to be the admin officer of our department. she has just passed her five year mark. She worked full time through chemo and radiotherapy, having it on her rostered days off. She did work at the hospital where her radiotherapy was. I know she had only recently separated from her husband and I suspect she was living alone. The other had very hardcore treatment for ovarian cancer and had a much rougher time and was only able to work 2 -4 hours on her good days, but her cancer was very very advanced so I suspect it was much harsher chemo than ours will be. She has just started back at work now and gave me a treasury of dealing with the side effects. I've been told I won't be able to work full time, but I'll be able to work part-time. I'm fortunate that work is a five minute drive and they are very flexible in terms of switching me to office work when I'm unable to see patients. It is gonna suck, I have no doubt at all. But I'm prepping myself to deal with all the side effects. I've had heavy (3 months in bed) depression and anxiety in the past. That's given me the opportunity to learn to use mindfullness to cope with anxiety/uncertainty. But throughout this journey, I have been grateful that I don't have any children to look after. And I suspect my mindfullness skills would be well stretched if I did. Were you working at all prior to diagnosis? Are you financially stable? Do you have childcare available, either formal or through friends and family? Are you having public/private treatment? Do you have access to a social worker? I start chemo tomorrow at 12:30, but very happy to continue to chat this afternoon and tomorrow morning.

Hi Sue, Thank you for sharing your experience, It helps to hear from someone going through it the same time I am. I feel a little better knowing that your experience has not been as bad as the other stories I have heard and reade. Thank you so much for your support and caring words.

Due to start chemo in one week | BCNA Online Network

29 Replies

ElizabethRose78
Member
12 years ago
Hi Chris Is it that you are happy to have chemo, but would like to have Full Axillary clearance as well? I think it can be helpful to find out the risk reduction of full axillary clearance on top of chemo. Also do you know if there were just isolated cancer cells in the Sentinel nodes. How many nodes did they take out each side? I had single mastectomy and Sentinel node biopsy which found isolated cancer cells in 1 out of 3 nodes. So the next week they did a full axillary clearance. I've just finished 24 weeks of chemo, about to start 5 weeks of Radiotherapy. I got through 22 weeks of chemo and then in the final week my arm blew up with lymphadema. This is a costly condition (in terms of time it takes for visits to physio, my time to do all the self massage at home and putting on garments, cost of garments ($150-500 ever six months for possibly rest of life). If there was good evidence of no significant risk reduction by doing FAC, then I would think the risk of lymphadema (which over 10 years is very high) is worth avoiding. But you need to do.what you need to do for your own peace of mind. I have to say, initially when my arm flared up, I was very very worried about having to have compression glove and sleeve on y, all day for rest of life. I'm really really hoping this is just a temporary problem due to chemo, which physio.and doctor say it may just be. To be honest I'm glad I had the FAC, but mine was Grade 3 Stage 2b tumor 4.8cm. I'm not sure if Grade 1 has less chance of being in the other nodes.
ElizabethRose78
Member
12 years ago
Hey Peta and LucVia. Peta, thanks so much for sharing. Just thought i'd say i'm doing really well, although i realise the second week of FEC is usually the worst.

I've only had short naps in the afternoons. Although, i often do have freqent breaks/run out of energy faster than i normally would. I did get up at 6 this morning and worked solidly and super productively on the computer for an hour and a half. I also spent a few hours at the markets today with family including my two very precious nieces (3 years and 3 months). Got

some good cleaning up done and a good 30 min walk.
peaacal
Member
12 years ago
I'm relatively new to BCNA as well and have posted my story in a separate blog post, however was also diagnosed in November and had a tumor and sentinel lymph node removed then had a full clearance as they found further cancer in the sentinel. The nodes removed came back clear and I am going to be undergoing 12 weeks of FEC then 8 weekly hits of Taxol and then will be on Tamoxifen for at least 5 years.

I'm fourth generation breast cancer in my family, with the majority being male and have found out I carry the BRCA2 mutation so will be having bilateral mastectomies once I get through Chemo then ovaries removed later down the track.

Soooo... I started FEC on the Friday just passed and have so far been okay. The medications they provide do help, however I too am nervous about the things I read and how I'll cope once the drugs wear off a little. My lads are a bit older than yours but again, I still worry (particularly with a Melbourne heatwave that's about to hit) how we'll get through the ups and downs.

My dad was diagnosed with pancreatic and then breast cancer and given 6 months to live and was considered terminal from the set go, however with the Chemo he undertook we had him in our lives for a further 7 years and he got to see my boys grow up. Everyone has to make their own choice and one that's right for them, however hopefully some of the positive stories on here can help you choose the path for you to take.

Happy to share any experiences I have, given I'm just starting off on the journey too.

x Peta
peaacal
Member
12 years ago
I'm relatively new to BCNA as well and have posted my story in a separate blog post, however was also diagnosed in November and had a tumor and sentinel lymph node removed then had a full clearance as they found further cancer in the sentinel. The nodes removed came back clear and I am going to be undergoing 12 weeks of FEC then 8 weekly hits of Taxol and then will be on Tamoxifen for at least 5 years.

I'm fourth generation breast cancer in my family, with the majority being male and have found out I carry the BRCA2 mutation so will be having bilateral mastectomies once I get through Chemo then ovaries removed later down the track.

Soooo... I started FEC on the Friday just passed and have so far been okay. The medications they provide do help, however I too am nervous about the things I read and how I'll cope once the drugs wear off a little. My lads are a bit older than yours but again, I still worry (particularly with a Melbourne heatwave that's about to hit) how we'll get through the ups and downs.

My dad was diagnosed with pancreatic and then breast cancer and given 6 months to live and was considered terminal from the set go, however with the Chemo he undertook we had him in our lives for a further 7 years and he got to see my boys grow up. Everyone has to make their own choice and one that's right for them, however hopefully some of the positive stories on here can help you choose the path for you to take.

Happy to share any experiences I have, given I'm just starting off on the journey too.

x Peta
janinaj
Member
12 years ago
I had chemo ed today as we'll. I hope you had a great nurse and that he/she was able to answer all of your quezzies and help you feel better about your decision. I thought if pass on a couple of things I've learnt while on here incase you haven't had the chance to see yet. There is a post on here about things that have helped others through their journey here - http://www.bcna.org.au/user/9176/blog/28978. It gives some pearls on things that helped others. Baking soda and salt mouth rinses for example come up a lot. As do icy poles for mouth sores. There might be some ideas on there to help you. For me, the main two things are having copious amounts of antibacterial handwash around the house and antibacterial wipes in the bathrooms. I found some hydralyte icy poles as well which I'm hoping won't taste awful next week because they will do great things for keeping me hydrated in this tropical weather!. Fingers crossed! All the best lovely, take care Janina
LucVia
Member
12 years ago
Thank you Janina, It really has helped knowing that there are people out there that are going through the exact same thing as me. My Onc has been great, I have a meeting this afternoon with the Chemo Care Nurse who will provide me with more education and answer all my questions so will definately make the decision this afternoon. Although after all the wonderful advice and positive thoughts I have receieved here I am def leaning towards the chemo.

Good luck on Monday you will be in my thoughts from way down in Sydney!!
LucVia
Member
12 years ago
That was absolutely helpful, thank you for your support and advice.
ElizabethRose78
Member
12 years ago
Thanks for your perspective Janina and for everyone else today. I found it very very helpful. It's funny, that while I guess I always knew it could come back, I hadn't thought of it the way that LucVia put it, that chemo doesn't guarantee it won't come back. I've been very lucky that I have trusted all my doctors, while at the same time I have had some encounters with health professionals during this episode and with doctors in the past where I haven't felt confident with them. I second Janina's recommendation to get a second opinion if the reason you've been nervous about chemo is because you haven't had good communication with your doctor. I guess my oncologist made it very clear there would be side effects but they were absolutely manageable. If she hadn't, I'd probably feel much more stressed. I've also found the Breast Care nurse incredibly helpful. Janina, I'm originally a NQ girl from Townsville with family and many many childhood holidays in Cairns. I've heard the public Occupational therapist specialising in Cancer care in Cairns is brilliant. One of my post chemo celebrations will be to head back North for a holiday, there's certainly a fair chunk of my heart there
LucVia
Member
12 years ago
You are an inspiration Kimmie, going through all this while pregnant and yet still so positive!! I may just have to take all these negative thoughts away and start being positive to get through. I wish you all the best with fighting this and especially with you new bundle of joy, I hope it is everything you dreamed of.
Kimmi
Member
12 years ago
Hi,

It's all really good advice above. I am 39 and pregnant and have had 3 rounds of chemo. I had never been sick, always active and healthy and admit I am a sook when it comes to needles and pain. BUT something takes over, you know you have to do it to get better, it's a mental decision you need to make. The morning of my first cycle I told myself I was looking forward to it because it was one step closer to getting rid of this thing. I found my friends scared me more than anyone, not their intention ofcourse because nobody knows quite how or what to say to you and sometimes it comes out really really wrong! I heard all the negative stories and how dibilitating chemo can be blah blah blah. But I went in with a " right come on let's get on with this" attitude and I have kept working full time apart from the odd early day. I have even thrown away the anti nausea drugs they give me every time I have the treatment. My experience may very well not be yours of course but it's true that it won't be as bad as you are expecting. Hair loss is the worst part of the whole treatment in my experience and even then, it doesn't take long to accept it's just a part of the process you must go through. It's all temporary, I get on with my life as normal as possible. Yes it's on my brain 24/7 but reading, positive affirmations, green juices and juice anything and everything every day give you the energy, lots of fruit, manicures, pedicures, getting lash extensions, going out of your way to help others in need, being in a peaceful environment and surrounding myself around positive people are things that help me personally.

I wish you all the best, my partner and I laugh about my first treatment, he dropped me home while he went to work because I felt fine and the steroids in the drugs gave me the biggest energy boost I have had in a long time. I vacuumed, washed the car, went for a 1 hour walk and cleaned the house from top to bottom! Choose your attitude and tap into that inner strength girl :) God bless x