Need Cheering Up

I am 63 and was diagnosed with stage 1 breast cancer in 1999. I had a mastectomy and the lymph nodes were clear. No radiation & no chemo, just 5 years of Tamoxifen. Twelve years with no symptoms, I thought I was in the clear. I was totally devastated when I was diagnosed with secondary BC in August. It was affecting one of my thoracic vertebra and compressing my spinal cord. I only realised I had a problem when my feet started tingling and I had difficulty walking. I underwent an emergency laminectomy and spinal stabilisation with rods. Once over the surgery, I had 5 daily shots of radiation on my spine.

It’s been a roller coaster ride - sometimes feeling well & then feeling very low. My bone scan showed that no other areas were affected and so my oncologist has decided daily Letrizole is the only treatment I need right now. My back has been aching more this last week and I constantly feel so tired. I spoke to the BCN this morning and she is going to bring my next appointment with the oncologist forward.

I am new to these discussions - usually avoid talking about my problems with people. However, reading all the inspiring stories makes me realise that there is hope. My daughter is 25 and I want to be around to see her settled with a family of her own. I want to be there to cuddle my grandchild. Now I’m crying! How silly is that?

Hi Lindy2
I’m really sorry to read of your new diagnosis, what a shock and yes, what a roller coaster ride!! I can quite understand how low you feel. I came onto this site having never posted anything before and felt uneasy about sharing my problems, as you are, but the women on here are amazing. I’ve been welcomed with open arms and so will you and we all try to give each other support. I first found the thread “Where did I go???” by Doz1949. On there we haven’t all finished treatment but the mood is generally upbeat. I was at a low ebb but found support in that we are all in it together! We liken ourselves to new butterfies emerging, so come and join the Butterfly Club!
Sending comforting hugs
Ami xx

Hi Lindy2, I’m sorry to hear your diagnosis, you wpuld think you would have been in the clear after all that time!
I was diagnosed in march with bone mets and know how devastating the diagnosis is. I alaso have a friend who had BC 20 years ago and has recently been diagnised with secondries, also a shock!!

It does really help to share our experiences and talk to others in the same position, reading some of the posts on this site from other women has offered me real hope and ispiration. there is a thread called “bone mets” you might find helpful, it helped me to realise that many women live for a very long time with bone mets, some of them have are between 8-12 years post diagnoses, so keep that in mind.

Pumpkin x

Hi Lindy, I think you will be glad you joined in - there are so many of us living with this disease and we really do all help support each other. The shock must have been awful to find after 12 years it was back. I haven’t been that fortunate to have 12 clear years. I did manage five when first diagnosed in 1990 but then it was every year or so something else until we discovered I was her2 positive and went on herceptin. Since then things have been reasonable stable - at least I havent had to have chemo since 2003! My bone mets were quite extensive when diagnosed in 2002 but with bisphosphonates & herceptin they have behaved. I hope your oncologist is checking regularly that your bone mets are being controlled with letrozole - if you have any doubts do press him to rescan and maybe go on bisphosphonates as well. I am glad your bcn has brought your appointment forward.

Like you when I was diagnosed I longed to see the time when my daughter was settled and with children - she was 29 when I was dx with bone mets and I had the joy of seeing her married 3 yrs ago, and with a little grandson for us who is 18mths now. Some of the things we fear we will never get to see do happen, just very hard when we are first dx with 2ndaries to appreciate that. You are not silly at all for wanting these things.

Dawn
xx

Hi lindy,

Sorry to hear about your news. You did the right thing in contacting your BCN and bring the appointment forward. It’s better to get it checked just for peace of mind.

I was diagnosed when I was about your daughters age about 2.5 years ago. Completely shocked as never thought I can get cancer that young! Before I even sat down properly on my primary roller coaster, about 2 weeks later, I had to get on the secondary roller coaster! As they said, the only good thing was that the secondary was caught early.

I had “partial remission” - to use my onc’s words, but also had progression along the way and now on my 3rd kind of chemo.

I kept everything to myself initially, well, that’s just me and how I usually deal with anything. But cancer is just too heavy for me to carry it myself. I started to accept help, even ask for help, talk to close friends, women who have experienced similar things. I’ve learnt so much and gained so much support along the way. Sometimes it just feels so good to unload and have a good crying on a strong shoulder. And I can truly say that I can’t do this on my own.

All the best with your upcoming appointment.

M xxxxx

Hi Lindy and welcome to the BCC forums

In addition to the valuable support and information you have here from your fellow users BCC can offer you secondary support and services which you may find helpful, you can read more here:

breastcancercare.org.uk/secondaries

Our helpliners are also here to offer you further support and information and the number to call is 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat

Take care
Lucy

Hi Lindy2
i had breast cancer in 1993 ductal insitu no lymphnode involvement so no chemo radiotherapy given tomoxifen which i took and then april 2010 was diagnosed with secondaries chest wall spine and epicardial pad fat august 2009 went to breast clinic with concerns was ultra sound on breast and discharged nothing wrong 3 months later found a large swelling on rib it had grown from behind my implant (previous mastectomey reconstructed with silicone implant)like you it was a big shock and my daughter was getting married aug 2011 and that was my focus and now my son is getting married june 2012 and that is my next focus and if i am lucky perhaps a grandchild to focus on after I am 59 on arimidex and bisphosonate (ibandronic acid)_tablet daily and calcium which is part of the zice trial i also have painkillers as i get stabbing pains in my chest wall and back ache which the gp had been telling me for 2 years previous was muscular i find this site and others very informative and gain hope that i may be one of the lucky ones from some of the stories and i always tell myself there are people worse off than me so please try and keep positive thoughts and live everyday as it comes
take care
kay