Looking for Support and Positive Vibes

Hello. I’m the newbie to the club no-one wants to join! I have just undergone my first chemo having been diagnosed with secondary breast cancer in the lymph nodes in my stomach and neck. My primary diagnosis was in my right breast in June 2003 at the age of 37. I underwent a bi-lateral mastectomy and cancer was found in my right axilla lymph nodes. I had chemo and radiotherapy, took Tamoxifen and Arimidex, had my ovaries removed as it was ER+. It’s been 7 years and I had started to allow myself the luxury of thinking I had beaten it! I have been absolutely devastated to learn of its return. I have been told that I am seriously and terminally ill and even (despite clearly stating that I didn’t want to know) been given my life expectancy by my specialist. My cancer is now ER neg and I am also now HER2+ which I think is a good think as this means that I can have Herceptin. Is there anyone out there who has secondaries in their lymph nodes like me? Also, can anyone tell me their good news stories? I am on Docetaxol and Herceptin for the next 4 months. I really need some serious uplifting here to help me through and I am sure you will all be able to help me. Thanks.

Hi Chris and welcome to the BCC forums

I am posting a link to the BCC information page about secondary breast cancer and the support we can offer you, you are also welcome to call our helpline where you can talk things through with someone in confidence on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2.

You can read the page via this link:

breastcancercare.org.uk/about-us/our-services/support-for-secondary-breast-cancer/

I hope this helps

Take care
Lucy

Hi Chris

Sorry to hear your news. You will find lots of support and inspiration from this site. There are lots of women who have secondary BC who are living full and active lives.

I was diagnosed with secondary BC in 2008 at the age of 42. I have liver and bone mets. I have had a course of chemo (taxol)and herceptin at the same time. I continue to have herceptin and I also have pamidronate and tamoxifen. I continue to work full time.

The last MRI scan showed no evidence of disease in my liver. I had a mammogram and physical examination today and there was no evidence of new disease. My tumour markers are 14 anything less than or equal to 28 is considered normal. I have no symptoms at present. The consultant told me that I look very well and I do feel well.

My onc told me that if it starts to progress he will zap me again with chemo he also acknowledged that there are now other drugs available that could be effective. When I fished around today a bit about stats and herceptin the consultant told me not to take any notice of them, he said the important thing is to remain positive and keep going.

I know it is a shock and will take some time for it too sink in, however as time goes on it does become easier to accept. I go to a support group run by Macmillan for women with secondary BC.

Alex
xx

Thanks. This comment was really helpful. But I don’t know anything about tumour markers. Can you enlighten me?

Chris

Hi Chris

I don’t have secondaries in the lymph nodes, but like you, I was first diagnosed in May/June 2003, aged 37. I went till 2008 before being diagnosed with bone mets, and I too had begun to hope that i’d beaten it. What a blow it is!

I think it’s disgraceful that they gave you a life expectancy when you specifically didn’t want to know. But do hold in your mind the fact that they go by statistics and their general experience, not an intimate knowledge of YOU. I had an 18 month daughter at time of sec dx and wanted to know how long I had so I could get my head round how much of her growing up I would see. My onc was very vague, said only ‘oh, we’ll keep you going for a few years yet’. I remember saying that a ‘few’ wasn’t enough, I wanted lots. Well, here I am, 2 and a half years on from that sec dx. Like you, I’m on herceptin and responding well to it. My onc is now much more hopeful for me than he was back in 2008, recently telling me about another of his patients on herceptin who had been having it for about 8 years! So I am really allowing myself to be more positive now and believe in the lots rather than the few.

I’m sure other ladies will be along shortly to share with your their lymph nodes stories,

in the meantime best wishes

Alison x

Hi Chris,

I am so sorry to read your story especially that you had the misfortune to have an oncologist give you such devastating information that you had made clear you did not wish to receive.

Like you I went a few years (6) after my first diagnosis in 1990 before it came back again - for me it was to be more primary recurrences, until in 2002 I was diagnosed with secondaries throughout my bones. The first sign anything was wrong was having a number of affected lymph nodes all around my neck, collarbone & upper chest, and starting to cause damage. I was put on chemo and the nodes all shrunk, but as soon as I came off the chemo they returned. This was all in the days before herceptin was much heard of but my oncologist asked for my tissue from surgery in 2000 to be tested for HER2, to find that I was indeed her2+++. I was already being treated with bisphosphonates for my bone mets but the amazing thing was that when I started herceptin all the affected lymph nodes completely disappeared and have never returned. My bone disease has been stable now for 8 years although I do have a small problem with a soft tissue tumour next to my lower spine recently that is creating a lot of pain probs. I really hope for you that herceptin will be as successful as it has for me, and give you many years.

I see that you say you will be on chemo & herceptin for 4 mths. It may be worth asking your oncologist if the herceptin works for you will you stay on it, because that is the usual practise. Remember if you are not happy with your oncologist you can always ask for a second opinion or change.

Dawn
xx

Posted for new user Diane
Jo, Facilitator

Hiya Chris,
Ive was given 2 years to live 9 yrs ago, my cancer went from the breast to the bones, Ive been taking herceptin for 5 years now and think is great, there are other treatments out there to so try and think positve, hard I no but it is getting better for us cancer patients. Im 41 now and all Ive had is a 2year break from this.wish you all the luck in the world xx

Hi Chris

Tumour markers are obtained from a blood test. They are one of the methods used to monitor the effectiveness of treatment and disease progression.

Thanks to everyone for your comments. It’s a tough road to start out on, but I’ve really found inner strength from reading of other people’s journeys. When you’re given your life expectancy, it’s very hard not to focus on that number, but I’m really pleased to see so many women are living for a long time and appear to be enjoying their lives, rather than living in misery and pain. So thank you one and all!