Hi everyone I have been monitoring the BCNA network posts for a couple of weeks and have finally got around to having some time to write something myself. In June 2010, I experienced same pain in my hip. I finally went to a sports physician in August. He diagnosed bursitis of the hip which is apparently common in women my age (40) with small children. I went to a physiotherapist weekly, for 3 months but there was no improvement so she sent me back to the sports physician. I went for an xray. The sports physician didn't like the look of the xray so ordered further MRI and CT scans. He had the awful news that it was cancer, suspected lymphoma or multiple myeloma. I went for a biopsy of my hip. The results showed it was secondary cancer. The cancer had originated from somewhere else in my body. What an awful few days I had as I was scanned, poked and prodded. I went to a bone specialist as the sports physician was worried about me breaking or fracturing my bones in my hip. I just wanted to see an oncologist!! I broke down crying at the orthopaedic surgeons. He was lovely. He looked at all the scans and then came the news from him, "I agree we need to sort out the cancer first. My wife is an oncologist and I'm going to ring her right now". I was so relieved! He took all my scans home with him so his wife (now my oncologist) could look at them. She sent me for mammogram and biopsy. On 3 December, it was finally confirmed that I had breast cancer in my right breast. It had spread to my bones (hip, pelvis, spine). I had had a breast examination by the doctor in March 2010. Nothing was picked up. I had been breastfeeding my son (now 22 months) up until I was diagnosed so I had never thought twice about the heaviness in my right breast - I just thought it was milk! I started hormone treatment on 7 December (zoladex) and also zometa (to strengthen my bones). I had radiation treatment on my hip and upper spine from 8-22 December. This has helped no end with the pain management of these areas. On 21 December, I had a mastectomy of my right breast and reconstruction at the same time. I am recovering well from the surgery. Unfortunately the cancer was quite extensive so I had to have all my lymph nodes removed and the surgeon could not save my nipple. I also have to have radiation to the chest area from 10 December for 5 and 1/2 weeks. I'm hoping the radiation won't knock me around too much. I had started Tamoxifen on 3 January but had to discontinue it on 2 February because of the increased risk of side effects with the radiation. I will resume Tamoxifen once the radiation treatment has finished. I start a meditation course tomorrow and hope that will help calm my mind. Most days I am OK but every now and then a wave of panic or sadness will overcome me. I am so glad that I have my two beautiful children to focus on and a lovely husband to support me. Mum and Dad have also come to stay to help me through all this. Friends have been so supportive too - many meals delivered to the house! I am determined to fight this thing and will throw everything at it. Sorry, I've raved so much. It's been good to get this off my chest (excuse the pun!)

Hi Tonya Thanks so much for your message. This is a horrible disease. Let's keep positive and hoping for a cure! Amy x

what a ride u are having...unfortunately sometimes things can't happen quickly enough but have faith in ur specialist team (they sound great)..they will play a huge part in ur new life now and often the process has to be 'ticked off' in order to ensure that nothing is missed...so all WILL be good and u sound like u have a great support network around you..with their help, ur strength and ur chemo team u will get to a stage of feeling well (altho it is hard to imagine right now)...secondary can be a scary thought (living with it myself), but if u can achieve some great results then u can enjoy some normality again, trust me... enjoy your family and friends (maybe just lots of cuddles on the left side) and certainly come here for more support as u need it..we are all here to help :) Good luck Sam :)

Hi Sarah How has the radiation been? Bet you're glad to be at the tail end of it now. Meditation tonight was great but I fell asleep!! The guy running the course said not to worry - if I was falling asleep it showed I was at least relaxed! Amy x

Hi Sam Thanks for the message of support. I am definitely approaching this thing with the mindset that I will LIVE with secondary - and live it to the fullest!! Take care Amy x

Wow you really aren't having a good run, are you? Keep up that positive attitude though and I am sure you will fight this thing. It is certainly time that they found a cure for this horrible disease that we are all fighting! Meditation sounds like a great idea! I had to laugh when you said that you fell asleep though :) I used to do Yoga and I was always so paranoid that I would fall asleep during the relaxation time at the end!!! and because I was lying on my back I thought that, knowing my luck, I would wake myself up with a huge snore!! LOL Keep in touch and let us know how you are doing Louise x

Secondary breast cancer | BCNA Online Network

22 Replies

Amy
Member
12 years ago
Hi Kathleen

Glad to hear that your cancer hadn't progressed. Have you tried Panadol Osteo for the pain? I found that it sometimes helped. I have also had radiation treatment for pain management and that has worked really well for me. My mets have progressed to my liver (over a year ago) and I'm currently on a tablet chemo (Xeloda). Hopefully this may halt any further progression for a while - I'll probably go for scans in Feb/Mar so will know more then. I am still working part-time at the moment (15 hours a week) but am thinking of finishing up as I get very tired and I want to conserve my energy for my family.

I noticed you'd also messaged Tracey. So sorry to tell you that she passed away last year. She was such a beautiful person and a great support to me. She is sadly missed.

Enjoy your time with your grandson - I think kids help us to keep in the moment rather than focusing on our cancer!

Amy xx
KathleenT
Member
12 years ago
Hi Tracy Just reading your post. You've had a run yourself-live that you do Tai Chi and meditation. I do that and qi gong as well. I found a DVD specifically for women. May I ask if you experience pain from your secondary spots? Just interested to know if anyone else feels pain in the metastasised spots. Keep well and positive Love from Kathleen xx
KathleenT
Member
12 years ago
Hi Amy I have been reading your posts-how scary to have the secondary cancer diagnosed before the primary! And what a lovely team of medicos you have! So sorry to read about all your trials. I had a very aggressive tumour in my right breast diagnosed in 2010, then they found it had metastasised into my right sacrum (lower back). I had a mastectomy and auxiliary clearance, then after having returned to work after 3 mths of yucky chemo, they found it in my left breast! How rude I thought, especially seeing I'd been on the "all singing all dancing tamoxifen" which is supposed to keep further instances of cancer at bay. Yeah right. Anyway, had another mastectomy, moved closer to my son and family, and have been more or less ok, but not confident enough to return to work, because I can't rely on how I'll feel each day. Most recently I'd been having constant pain in the back where the secondary is, so just had more scans. Found out today that its still stable, & hasn't got bigger or spread, which is great. I need injections every 6 weeks to help with bone strength, & need to take loads of Vit D. I can do my nanna day, once a week looking after gorgeous grandson, which keeps me sane. Hope you don't mind my chatting to you-your story resonated with me, & I think you've been through a lot and I love your humour and determination! Hugs to you Love from Kathleen xxxxx
CoraN
Member
14 years ago
That's right amy don't give up on fighting it. I have known some people who had such kind of disease, but they never give up, they had gone through several medications with the help of their friends and family, until it was cured. You are not alone with such this illness, and even men suffer this. Breast cancer is uncommon in men, but it does occur. The physiologies of female breasts make them more prone to tumor growth and metastasizing. But for 26-year-old Raymond Johnson, breast cancer is there - and Medicaid won't pay for his treatment regimen. Resource for this article: S.C. man denied breast cancer coverage by Medicaid. By the way, I would like to wish you luck. Just keep on praying, and everything will be alright.
JaneL
Member
15 years ago
Hi Amy

Thank you so much for your prompt response. Yes, shock is sort of an understatement isn't it. The bad news just kept coming for us. And just six weeks earlier had been the happiest day of my life. I finally got married to the man of my dreams, the first marriage for both of us at 55. I thought I was the luckiest girl in the world, a good job, a teenage daughter who had finally come out of her teenage angst, and a fantastic man.

I'm glad to hear you went well with surgery and my fingers are truly crossed that your scan is positive. I am seeing Dr Barry at the end of this month for a second opinion. Dr Gorddard at Canberra hospital is my oncologist and she assured me he does not operate unless he really thinks it will help. I also want the reconstruction, even if I only lived the minimum statistically, it is important to me. I've been a bit shocked at my vanity, I know it is what is inside that is important but I hate looking like a cancer patient, and can't wait for my hair to grow. If the consultation goes well, I probably change my surgery to Canberra. More convenient of course, and if he operates in the public system there is a cost advantage. The Sydney surgeon can operate at St. Vincents public but his charges are private so would add up.

My last chemo (for now) was yesterday so I'm feeling much more positive. Of course, I'm scared the herceptin won't work or won't work for long but just have to be positive ( and I loathe it when people say that to me!). And can't wait to stop taking those awful steroids - they do great job of minimising side effects, I've had a pretty easy run, but I've put on weight through emotional eating, the drugs and lack of energy to do any decent exercise.

I would love to catch up for a coffee if you would like. I'm not so much a group person and so many groups seem to be for early breast cancer patients. I don't want to hear them talk about a cure and end of treatment and I hear they are not so keen to be reminded that could become one of us. Where in Canberra do you live, I'm northside in Lyneham. My email address is webbhurst@hotmail.com or 0423 676 246. I'm off work until 24 June and then will see if I am up to going back, but it will only be on a part time basis to start with. Luckily I'm a pubiic servant so i have heaps of sick leave having never had to utilise it before.

All the very best and thanks again.

Jane
Amy
Member
15 years ago
Hi Jane

It's a bit of a shock to find you have breast cancer but also that it has already spread to other parts of the body isn't it?

My surgeon was Dr Peter Barry. He has offices at Calvary. He was the one that suggested I have the reconstruction at the same time as the mastectomy. I'm glad I did it as I think it helped me psychologically to have a bump there even if it wasn't mine! It has all healed really well. I went to see Dr Barry this week and he is pleased with how well I have recovered. I have full movement back in my arm/shoulder and the scar tissue is looking good.

I would highly recommend Dr Barry. He takes on private and public patients (I went as public).

I go for another full body bone scan next week to see if the Tamoxifen has been working. I have had pains in my left hip and lower back just the last couple of weeks so I'm thinking that my oncologist may look at another course of action. Other than those pains (!), I feel great. I think I am coping a bit better mentally now too. Although if the scan results are bad I'm sure I'll find that difficult!

If you want to catch up or talk any more I am happy for you to contact me. We seem like we are in similar situation with the mets in the bones and it's always nice to know you're not alone.

Take care and try to keep positive.

Amy
JaneL
Member
15 years ago
Hi Amy

I saw you post to the Canadian lady and as I live in Canberra was going to reply but thought she might get responses from people more in her situation and age, so held off for a few hours (although I will also respond today). So I saw your post and when you mentioned mastectomy I read your earlier posts. I am in a very similar situation, although fortunately didn't have the long and difficult journey you had to get to diagnosis. I found a lump in my breast on new years day and within 3 weeks found it had spread to my bones, throughout my spine and pelvis and was HER2+.

I am having my last chemo today, hooray, and then move onto Zometa and Herceptin only. The chemo has worked well and the lump has reduced considerably and can't be seen by a CT scan. However, my breast surgeon has recommended a mastectomy and as i asked about the possibility of lumpectomy, he sent me for an ultrasound which showed a very small tumour was still there. My oncologist doesn't think surgery is necessary though.

With all the information out there, or rather lack of definitive information, it is still really a toss of the coin as to whether to do it not. I am veering towards doing it, and would like to have a reconstruction at the same time, and i would be really grateful if you would let me know how you came to your decision, how the reconstrution went, what your doctor said etc.

I am going to get a second opinion here in Canberra, because it was the summer hols when i found the lump, no one was around in Canberra so I found a breast surgeon in Sydney, the worst thing is not knowing and waiting. Like you, I have days when I am very down and weepy, and others when i feel almost normal. I'm in the fortunate situation of having no pain, and my daughter is 20 in a few months, and I really feel for all the young mothers out there. But of course, there are still so many things I was looking forward to and to some degree i feel they have been ripped away from me.

I hope you are doing well and hope to hear from you

All the best

Jane
JaneL
Member
15 years ago
Hi Amy

I saw you post to the Canadian lady and as I live in Canberra was going to reply but thought she might get responses from people more in her situation and age, so held off for a few hours (although I will also respond today). So I saw your post and when you mentioned mastectomy I read your earlier posts. I am in a very similar situation, although fortunately didn't have the long and difficult journey you had to get to diagnosis. I found a lump in my breast on new years day and within 3 weeks found it had spread to my bones, throughout my spine and pelvis and was HER2+.

I am having my last chemo today, hooray, and then move onto Zometa and Herceptin only. The chemo has worked well and the lump has reduced considerably and can't be seen by a CT scan. However, my breast surgeon has recommended a mastectomy and as i asked about the possibility of lumpectomy, he sent me for an ultrasound which showed a very small tumour was still there. My oncologist doesn't think surgery is necessary though.

With all the information out there, or rather lack of definitive information, it is still really a toss of the coin as to whether to do it not. I am veering towards doing it, and would like to have a reconstruction at the same time, and i would be really grateful if you would let me know how you came to your decision, how the reconstrution went, what your doctor said etc.

I am going to get a second opinion here in Canberra, because it was the summer hols when i found the lump, no one was around in Canberra so I found a breast surgeon in Sydney, the worst thing is not knowing and waiting. Like you, I have days when I am very down and weepy, and others when i feel almost normal. I'm in the fortunate situation of having no pain, and my daughter is 20 in a few months, and I really feel for all the young mothers out there. But of course, there are still so many things I was looking forward to and to some degree i feel they have been ripped away from me.

I hope you are doing well and hope to hear from you

All the best

Jane
Amy
Member
15 years ago
Hi Tracey

Glad you are not having too many side effects from the chemo and that it's coming to an end. Let's hope it's doing it's job!

I'm not having a great day today. I feel quite alone in all of this and although my family are around me I don't believe that they can truly understand how I'm feeling. My husband has taken the kids off to give me some peace but even in doing that I had the feeling that he thinks I'm being a bit 'over the top' about all of this etc. Maybe it's just my imagination but it doesn't make me feel good :(

I have felt nauseous the last couple of days but I'm not sure if that's from radiation or just something else. But it hasn't helped!

Anyway, I've spent enough time feeling sorry for myself. Hope you're having a better day!

Amy x
traxx65
Member
15 years ago
Hi Amy,

I live in Victoria. One of the things they told me at the start was that not everyone can have chemo. That also surprised me, I just thought it was an automatic thing. I have had 3 treatments now and I go for my 4th on Thursday and during this time, I have seen some people who have had reactions and even though it sounds strange, I am really lucky to only have leg pains. It can be a bit of an eye opener.

Feel free to rave on anytime. I tend to get a bit passionate about the whole thing sometimes and will go on and on, but until this site, I have never had anyone to talk too who has been in a similar situation and really understands how it feels to be living with advanced cancer. It is so great that we can pass on bits and pieces of information and let each other know that we are not alone.

Take care of yourself and your little one. Give him lots and lots of cuddles, because cuddles make everyone feel good.

Take care.

Tracey xx