Feeling scared and uncertain

jennywren

3 years ago I was diagnosed with stage 3 breast cancer and underwent a right mastectomy, chemo radiotherapy and then started on tamoxifen. Whilst always living in the shadow of it returning, I got on with life, saw my stepson marry, my son become a father and my daughter is just completing year 12. I thought I was ok. Then 5 weeks ago my world crumbled around me when I discovered the cancer had returned in my scar tissue and I have now been told I have advanced breast cancer.

I consider myself lucky it hasn't spread to my bones or organs but I am terrified that it will. My oncologist is putting me on levistol along with a new clinical trial which she says has amazing results in the USA. She sounds very optimistic and assures me that if my cancer doesn't respond to these drugs there are plenty of others. So why do I feel so scared this time round? I guess I am now facing my own mortality and that scares me. I am only 52 and have so much more living to do.

I understand that many women live with secondaries for years, I would love to hear from you and how you coped with this news. I am a positive person, I have to keep fighting as I don't fancy the alternative, but realistically I feel I have just been handed a death sentence. I am sorry if this sounds blunt, but this is how I am feeling right now. Any guidance or words of support would be greatly appreciated.

Also, I live in Perth so if anyone can recommend any good support groups that may be a help to me.

Thank you xx

Lillightontheleft

You definitely have been given a shock. I don't know a lot about it but it is no stretch to figure out how it feels. I felt that way when told my tumour which EVERYONE had harassed me for insisting on mastectomy for such a small lump, was in fact triple negative, with all the uncertainty attached. My breeze through breast cancer with surgery and follow up hormone tx suddenly became a much more involved journey through a darker, more uncertain place. I kept thinking 'but I have young kids!' My best weapon against my fears is knowledge. Look everywhere, see what is being done and pummel your oncologist with questions. I would wonder about radiation to the scar tissue, but as I say, I am uninformed about recurrence. It sounds like she has her finger on the pulse if she is talking clinical trials and that would lighten my heart too. Best of luck on your new journey, I don't have a bucket of knowledge but feel free to contact me for anything from venting to discussing recipes (sorry, I'm a crap cook too!). Always happy to listen. If my reply is slow it may be chemo related - I develop a real aversion to anything with a screen! Leigh

Lillightontheleft

You definitely have been given a shock. I don't know a lot about it but it is no stretch to figure out how it feels. I felt that way when told my tumour which EVERYONE had harassed me for insisting on mastectomy for such a small lump, was in fact triple negative, with all the uncertainty attached. My breeze through breast cancer with surgery and follow up hormone tx suddenly became a much more involved journey through a darker, more uncertain place. I kept thinking 'but I have young kids!' My best weapon against my fears is knowledge. Look everywhere, see what is being done and pummel your oncologist with questions. I would wonder about radiation to the scar tissue, but as I say, I am uninformed about recurrence. It sounds like she has her finger on the pulse if she is talking clinical trials and that would lighten my heart too. Best of luck on your new journey, I don't have a bucket of knowledge but feel free to contact me for anything from venting to discussing recipes (sorry, I'm a crap cook too!). Always happy to listen. If my reply is slow it may be chemo related - I develop a real aversion to anything with a screen! Leigh

Friend13

Dear Jenny, I've been in this world for a year ( I got the whole Advanced scene in one hit - 45 ) and my two cents worth is : try to not let this take away your joy and always have hope. I was very ill when first diagnosed and couldn't walk without a stick as a result of the bone metastatis. I am now a walker and a Pilates lady and I can't complain much about anything else at the moment ! It seems we might go through changes in condition and we are all different but we are in such good hands medically and there is so much research going on. There , I've had my say :);) ! Cioau, Fiona , ox

KathleenT

Dear Jenny (I assume that's your name) And...goodness me! Someone else who read the Abbey Girls and so you've used jennywren! (Unless your name really is Jenny Wren!

Wel, after all that, here's the thing. Your story is a little similar to mine. I was diagnosed in 2010 with a very aggressive grade 2 cancer in my right breast:so large, it actually hurt (due to pullinh on the chest wall ). I had a wide local incision. Then a mastectomy and auxiliary clearance. Followed by 3 months of "the most poisonous chemo we can give you), then tamoxifen. The cancer had also metastasized into a lesion in my right sacrum. So I have secondary cancet. It has remained the same size until now-crossing fingers.

However, exactly 12 months after first diagnosis, after "anniversary" mammogram on left breast, cancer was found there as well. I was extremely angry, having been told that tamoxifen would significantly reduce the chance of further cancer. "O, perhaps you are in fact menopausal, so we'll change you to arimidex...... (sorry, Ive become a tad cynical!)

Have been on arimidex ever since, bit in back is staying unchanged.

Keep an open mind with your treatment, be positive and strong. Apart from aches (arimidex) and ridiculous fatigue, I am well. This bit in my back may stay there for years, without affecting me. I'm only too aware that "advanced" differs from "secondary", but there is so much that can be trialed and tested now.

I love this site for venting, meeting new girls (I'll be 58 this year, son's wedding in December. Always know you can come here for virtual hugs and support. I am in Melbourne. See if you can find a breast cancer support group in your area, or attached to the hosputal where you're having treatment. I'd be lost without this site and our froyp.

Love to you
Kathleen xx

Exactly 12 months later

Leonie Moore

Something led me to go on this site.  (I only come here very irregularly).  Long time no talk.....  You and I did chemo together back in 2011.  I have often wondered how you were going.  I am so sorry that you "are back"  Hang in there and little by little - one day at a time.  Do you have a "plan of attack"?  I would love you to come on Facebook and join our Secondary Breast Cancer Group.  This group was started by Amanda Rynne (MandyMoo) who was travelling the journey with us back in 2011.  There are so many amazing women living with secondary bc and they are living well on treatment.  The site is a wealth of knowledge, support and love given unconditionally.  My love to you Jenny XLeonie

jennywren

thank you all so much for your messages. They certainly lifted my spirits to know others are travelling a similar path and doing ok! Kath my real name is Jean but my mum always called me jennywren so that is my nickname and what I call myself in any self talk situations..lol!!

Leigh, I apparently can't have radio on the scar because I already had radio in that area after my initial diagnosis and I have been told you can't have it twice in the same area.

Hi Leonie, lovely to hear from you. Of course I remember you! How are you? I would love to join your Facebook group, perhaps message me the details and I will take a look.

Thank you to everyone of you for your support. I am feeling stronger with every day. One question I would like to ask is regarding work. Last time I worked through all my treatments taking minimal time off. This time I don't need chemo or radiotherapy but I feel more emotionally and physically drained. I am currently off work and just wondered how others have coped. Did you take much time off work or did you work through? My job is quite stressful and demanding and I just don't feel in the right head space to be there at present.

Look forward to hearing more from you all soon

Take care xx

KathleenT

Hi again Jean

Thanks so much for your replies to all! Regarding work, my job wasnt particularly stressful, & i did return between mastectomies. They had a return to work process, where by you could virtually dictate the amount of time you spent, but i was put in an even less demanding job within same organisation. Even that turned out to be too much, so i resigned eventually, after second mastectomy. My fatigue is always there. I havent gone back to work at all, and I'm on my own (my choice ), so financially its all a new stress reason! I play piano twice a week for a college, but thats it.
My suggestion to you is, access your income orotection and disability payout from your super, especially if you feel so drained. If you are with a partner it wont be so difficult as it is for me. You need to think of yourself and the things that bring you joy. For me, its the breast cancer group, friends on facebook and most of all, time with my grandkids. To me, these are more important than worrying if we have enough super or money to survive.
Hope that helps

Love to you
Kathleen