And more decision making; how much more of this can I take!

Sue Jones

I am really sorry that this is not one if my normal flarey blog posts but everything is taking its toll on me and my head is just so overwelmed with emotions, information, thoughts, etc.......  So it is Tuesday, November 17, we have been to the oncologist and this is the news! The cancer has been removed, there is no evidence of cancer being in my lymph nodes or in the lymphatic system in my breast. The type of cancer I had responds strongly to positively to oestrogen. ?? I am told that I don't need chemo! Very happy I am.  So after I go onto hormonal therapy and have my mastectomy this will reduce my chances of getting cancer back again by 88-89% I'm told.  Then she went on to say, If I do a 12 week program of a low dose of chemo, 4 sessions - once every 3 weeks, I will reduce my chances of it returning by 91-92%. She finishes by saying that it is totally up to me.  I walk out feeling numb and confused and struggling to take in the positives,  So yes there is lots of great news but I still have to make a decision whether to do chemo or not. With doing chemo, yes I would lose my hair (worries me big time) but other side affects should be minimal, maybe tiredness, constipation or diahera, tingling and some joint pain. I have to make this decision by next Tuesday. If I do the chemo, the chemo would be done first then followed by the hormonal therapy and mastectomy. Still trying to take this all in and Tim is telling me to be positive about it all and not look at the glass half empty. So yes I am trying but it is so hard. It is weighing up all the pros and cons, the what ifs, all yucky aspects of chemo, etc....... Normality is not in my vocab and I don't know if I can take much more of this, struggling to process it all.  I have since spoken to my hubby more, BC nurse, GP, family and friends, some with varying views, but they all have said that it is totally my decision and one that I need to be happy with and feel comfortable to live with.  On top if this I still have to investigate my reconstruction options but this will now have to come later.  On a positive note, a big surprise is coming my way next week after the next oncologist visit and involves a plane.  A certain love of my life is not giving anything away but I'm not available for about 8 days.  This suspense is killing me!!! ??  Thank you ladies for all your kind thoughts and words of encouragement and support in my journey so far. ????

Brenda5

Ask a bit more about this low dose chemo. My mum has a friend who had a mastectomy already and she is 75. Her chemo is given with a daily tablet so not too invasive. Who knows, she might be one of those ladies who lives to 95 no problems so that chemo could be just about guaranteeing another 20yrs of cancer free life.

Robyn W

Hello Sue,it never seems to end does it?My cancer was like yours,in that it hadn't spread to the lymph nodes ,however when my oncologist,a Professor in Sydney,suggested chemo,I didn't hesitate.My way of thinking is that I will never take a chance with cancer,even if the difference is just a few percent.That few could mean the difference between the cancer being wiped out OR returning.I had four rounds of chemo,starting November 2013. Believe it or not,after my hair fell out ( but I also had my head shaved first) on day 14,I grew to love being bald!! It is so freeing,so cool in the hot weather,showers are shorter because there is no body hair to get rid of!!!!There are some gorgeous turbans,hats ,etc. so colourful,to get you through summer,if this is the road you choose.I know other ladies will not agree with me,but I just wanted to give my perspective.Please stay in touch.Cheers Robyn xox

iserbrown

Hi Sue - your Oncologist has been very thorough in giving you all the options.  You're gathering encouragement and opinions from family and friends to help you decide what is the best option for you. 

Robyn mentioned that she chose the chemo option as she wanted to give it all.  I admire Robyn for that.

I didn't choose chemo as the gain was less than 3%.  I asked the Oncologist at the initial appointment if I missed the chemo option what was the preferred course of treatment for me.

At present I'm having  issues, which I'm not sure if they were already simmering or if medication has brought it on, so the chemo option may come back into the equation.................that will be discussed next week when I have my review.

I've also had a mastectomy which was immediate, I think your journey has been lumpectomy and now mastectomy.  I've had expander and changeover surgery and extremely pleased with the result.

At the end of the day you have to find time to reflect and decide what is best for you both emotionally and physically...............it's not easy!

I wish you well and I'm sure you will have the confidence to make a decision that you'll be happy with.

Take care

Christine

LisaS

Sue,

yes. Having a choice is hard. When it isn't a black and white decision it's just so difficult.

if it was me, the things I would consider are the cancer grade (is it 3 or 1?), your ki67 score, plus have you have the oncotype test, which you can do if your are node negative.?

I would also speak to my breast cancer nurse, and browse other breast cancer forums such as /community.breastcancer.org/ See how you feel when you hear other people's stories.

finally it depends on your feelings. Are you anxious about it returning? Or not? Are you comfortable taking the tamoxifen/AI is enough? (Those statistic things never make any sense to me)

writing down a pros and cons list can help too.

sorry you have to make this decision.

L

rowdy

Hi Sue the lines keep changing and so do the decisions. Just remember no decision is bad it is what you can live with. Take time to consider all choices as others have already told you their choices and why they went that road.  Good luck don't forget to breathexx

holly1981

Hi Sue, it's times like these when you want to curl up in a ball and pretend it's all not real. My situation is a little different to yours but I too have been faced with the constant 'more bad or confusing news and hence decisions' at each new appointment I attend!

Something that helped me with the last big one was a counsellor that got me to change my thinking from 'what option is the right way to go' to 'which thing will I most regret NOT doing if the cancer does come back later'.

I am 34 and although I found chemo very unpleasant and to be honest I still struggle emotionally with my hair loss and early menopause symptoms, the peace of mind I got from knowing that at least I have done everything in my power to keep this thing from returning far outweighed all the negatives for me. But that was my thinking and everyones situation and BC is different. Either way you will make the right decision for you, you know yourself better than anyone else. Just give yourself a little more time to think on it and be gentle with yourself. 

All the best xxx

Gillian2069

Gosh, that is a hard decision! I don't know that I would choose chemo for a 2-4% difference. And I'm not sure that I think about chemo that makes your hair fall out as "low dose".

My decision was crystal clear - chemo (16 doses over 6 months) would increase my chances by a third. So I did it. I avoided the worst possibilities (no heart damage, wasn't hospitalised with infection) but I got everything else. It was tough and grueling. I was blessed to have a great support network that swung into action to help me through.

The main thing that helped me was to step forward into the treatment plan with a welcoming attitude. I chose to do it, so I would work with it as far as I could. Goodbye reluctance, hello welcome.

Make your decision and then don't mull over it. Step forward into the treatment with loving kindness.

Good luck!

Gillian

ChrissK

Sue, with my type of cancer Invasive Ductal Carcinoa the oncologist said she could not understand how it went to one lymph node but she suggested that I only needed 4 rounds of AC chemo for 12 weeks but I did have the option to continue with 12 x T Chemo after that for 12 weeks.  I made the choice to do everything in my power to beat this, especially with the fact that it went in one lymph node.  I didn't want to take any chances or any shortcuts.  And I have also made up my mind to have a mastectomy after chemo.

All the best and you will know deep in your heart what the right thing to do for you!

Invasive Ductal Carcinoma

Invasive Ductal Carcinoma

Nadi

Hi Sue

I fear I am facing the same choice. My margins were good, my lymphs were clear, but I am 47 yrs old with HER2+ Grade 3 with Ki 67 score of 70%. While the majority of women who have the exact same cancer who choose not to have chemo will still be here after 5 years, I've been told that my chances of the cancer not coming back are improved if I have chemo and take Herceptin and that this will probably be confirmed by the chemo oncologists when I see them next week.

Ahead of the appointment with my oncologist my thinking is along the lines of if I turn down the option of chemo for a small percentage gain, will I regret not having tried everything I could? The answer for me is yes. My sons are youngish  21, 18 and 16. My husband and I have such grand plans for retirement. That's 13 years away and I want to desperately kick cancer's butt so I can do the things we are planning to do. I am also desperate for grandchildren (not my decision I know, but I can dream that one day my sons will have kids).

There are so many things I am looking forward to. Also the constant feeling of uncertainty I have now at the very beginning of this journey is driving me crazy. How will I feel having a big question mark hanging over my head going forward? I can't stand the thought that maybe there's a higher chance the cancer will come back if I don't do chemo when/if its offered.

Having said that I wonder about how I will go with chemo since I have such a bad immune system (I seem to catch every cold and virus going around), have joint problems from severe sporting injuries when young which have also helped to make me obese, have high blood pressure and heart issues. All factors that may mean chemo may not be offered. Not to mention I have long red hair - my defining feature - and losing it will be hard, and that losing an income if I can't work will really push us to the wall.

Sigh, such a lot to take in.

Hopefully now that it is a few days later the decision is a little easier for you. There is no right or wrong decision, only the best for you emotionally.  I wish you all the very best.

Nadine

 

 

Karel01

Dear Sue,

12 years ago I was given the choice of chemo after a lumpectomy and no ancillary nodes removed as they were clear. As I was so scared at the times refused. Went on to arimidex for five years. All clear until 2010 and a recurrence.. I wasn't in the group of 88-89% no recurrence. Hopefully you are. Mastectomy, all clear in nodes, ancillary clearance, just in case. Chemo never offered. 2014 I chose to have my other breast removed as a precaution.

YEP... January 2015 secondary cancer in my bones and lung .... Devastation, frustration and yes fear.

i was put on aromosin and radiation of the lung. I decided to take each day as it comes ....... I won't go into horrendous side effects of aromosin but my oncologist decided on chemo and then faslodex ..... Another hormone receptor blocker, line 4, treatment. It has been hard ( I am up to dose 15 of 16 taxol. Yes it has taken its toll but I am hoping it will give me the extra time just to enjoy my beautiful family.

it will always be your decision,as it should. I do not dwell on my decision in 2003, as "what ifs "are not productive. But if you are doing a should I, shouldn't I comparative list, put me in the I should.

good luck enjoy the 8 days away and listen to the other wonderful women who post here.

best wishes,

Karel

Sue Jones

Hi lovely ladies!

Thank you so much for all your kind words, support, advice.  I am pretty sure that I am heading down the chemo path, need to cover all bases is my belief.  I am visiting a wig shop to see what's out there to try and ease my scarceness about losing my hair, don't know if it will work but it's worth a try. 

Big hugs from the west to all of you who are also still going through treatment like me. X????

Sue

rowdy

HI Sue losing your hair is scary and tough when it is happening, but in the scheme of things it is small. I cried when mine fell out and I had it all cut off because the falling out was worse for me. I adjusted fairly quickly to having no hair as there was so many other things happening. I did buy a wig  as I worked during chemo but I did prefer wearing a scarf, I found wearing some colour helped me in some way.

Take care and sending you a hugxx

kazza4450

hi Sue

I've been meaning to get on here to respond to your post.

I too was given similar diagnosis to you.

After lumpectomy and level 2 node dissection, I was given the odds of the cancer coming back as 24%.

With Tamoxifin (Hormone Therapy) taken for approx 5 years it reduced the odds of it coming back by another 13%, so now the odds would be 11%.

Then to throw a spanner in the works they put the stats in front of you.

Okay Karen if you go the chemo road, low dose over 16 weeks, 4 doses, it will reduce the odds of it coming back by another 4%, so now the odds would be 7%.

Up to me they said. My choice. The assistant oncologist said if it was him, he would do it, wouldn't risk it coming back.

I was in two minds. Part of me was 4%, why would I put myself through that. The other part was, do everything I can.

I seen my sister who had just arrived from nsw, my neice, my daughter straight from the hospital. All 3 were like do all you can to survive this. My sister said there would be no decision, she would do it in a flash.

My son said ( I have 5 young adult children) to think about it, and maybe not put myself through it.

I prayed and thought about it a lot. I spoke to many people.

The only decision I could come to, was that I wanted to be there for all my wonderful children, 3 grandkids, family etc. I couldn't decide to agree to chemo, but I could not make the decision not to.

So in saying that, my decision was made by my indecision if that makes sense. I could not freely say no to chemo. I also decided not to base my decision on fear of the chemo.

So I agreed to go ahead with it. I cut my waist long hair really short, got wig's etc and prepared myself.

After 4-6 weeks, and several attempts to start chemo, the decision was made to scrap it. I had 4 months of post op infections and temperatures so they decided it was too risky. I was relieved as I had begun to feel chemo was not the way to go as my immune system was wrecked long before surgery and after 2 ops, 4 months of infections it didn't feel right anymore.

So in the end the decision was taken out of my hands.

The biggest thing though originally was to go with what felt right for me and to not let fear stand in the way of the guy feeling I had pushing me which way to got.

I could not feel a peace about not doing chemo, so that's how the decision was made.

I hope I haven't confused you, lol.

My odds were 4% better if I had of been able to do chemo, but I am fully trusting God that this was exactly the way it was to be played out with me and I'm grateful the journey took me this direction.

I'm trusting God fully with my future.

Hope this helps.

All the best tomorrow, you will be in my prayers with your decision making...xxx