Blondie - 21 years on

Here I am again -I started Herceptin treatment for secondary breast cancer in liver and bone in 2003, still here and still receiving my 3 weekly treatment (number 343).
Unbelievably it was 30 years ago this year that I was diagnosed with BC in my left breast.
It seems a lifetime ago that I (and my family) went through all that trauma. Secondary BC was a death sentence, especially as there was significant spread to my liver, but thanks to Herceptin I am still here.
As a ‘long term survivor’ I do wish there was more research into why some of us have achieved this status. Is it just luck?
I certainly haven’t any answers but continue to live life to the full - eat (basically vegetarian plus some fish), drink and be merry.

All my best wishes to to my friends on the boards (we have travelled a long road together) and for those nearer the start of their journey, I wish you a long and interesting road with not too many bumps along the way. xxx

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It’s good to know that herceptin has been so great for you. My first diagnosis Her2 negative was also in 2003. I had a new primary in 2022. It is such a lottery and one person’s cancer can be very different from another’s. I always dreaded getting it as the most successful treatment is surgery or as I see it amputation of the organ in question. I really didn’t want this but I am now four operations on reconstructed diep left breast, after lumpectomy, quadrantectomy, and infection in 2003

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Hi,

So pleased that you have had such a good response to herceptine. I hope some new drugs are available soon for everyone unlucky enough to be told they are stage 4.

There is no logic to who does / doesn’t get cancer and whilst we can do something to lower the known risks there is no guarantee.

If i had known as much as i do now at my primary diagnosis i would have made some different decisions but even so, there would still have been a risk of recurrence.

Thankfully i feel fine on my medication and appear stable at the moment. Even so i have decided to tick off all those retirement holidays now and enjoy NOW.

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Wooow congratulations and thank you very much for sharing!!
Best wishes!
I’m 2 years in it, and currently terrified, but I try to enjoy my life anyways, and read other people stories give me much hope!

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You must have been very young, my doctor wouldn’t prescribe it for me at 77, he said no benefit it wanes as you get older and the cutoff is 80, my cancer was tiny 6mm I guess they just observe and cut if it comes back, also no tests to see if it has spread.
It’s really amazing how well it’s worked for you, thank you for posting such awesome news, and may your good luck continue.

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I’m glad you are getting sorted but so sorry you got infections - that’s rough, my friend’s daughter went through months of infection and recovery. Stay strong x

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So pleased you took the time to write this, i am only part way through the journey, and its so good to hear soccess stories. Well done and gool luck

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Wow that fantastic.
I am 1 year in to secondary to hip rib and spine.
Radiotherapy cleared rib and dpine and palbociclib to control hip.
Some days feel like wow is the the last timd im going to be doing Christmas, birthday other days feel like a fraud as i feel fine.

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@blondie

Thank you for sharing such a positive post. I’m sure it will give hope to many searching for answers.

Am an HER2+ with bilateral primary and I’ve just had my 12th Herceptin out of 18.

Take care🥰

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That’s great Blondie, thank you for sharing, it 's always good to see long term survivors. When I was first dx with secondaries I looked to find long survivors to give me hope. I’m now 14 years with bone mets myself now :grin: A few ups and downs but feeling blessed to have responded to Letrozole for so long. I wish there was more research too. May you continue to have good response to treatments x

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You cannot know how you have lifted me with this post. I am a very positive person anyway but naturally have bad days/weeks of which one is coming to an end - not because of the bc but I suffer, more than most I think, with uti’s and vaginal atrophy. 8 months in I am still trying to work that bit out, I’m ok with the drugs and the surgery was a walk in the park looking back! I imagine all bc victims have that nagging worry in the back of their mind it will turn up somewhere else and it’s so good to hear that it can and people still survive. I met a youngster of 50 yo recently when we were on holiday who has had terminal lung cancer for 5 years, when diagnosed they only gave her 6 months to live, it gives us all so much hope. Good luck with your continued journey and thank you x

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@blondie thanks so much for sharing, this is an inspiration and gives some perspective
@Yorkshire_Tyke what would you have done differently, out of curiosity? :slight_smile: Maybe some of use can draw some ideas. Thanks!

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Ok, so if i’d have known at my primary diagnosis what i know now.

  1. Asked more about the surgical options. I was offered lumpectomy or mastectomy with surgical implant.
  2. Not panicked and rushed to a decision immediately (which is what i did)
  3. Used my private health care to get a second opinion.
  4. Chosen a mastectomy (much lower local recurrence rate recurrence risk despite what the say) and known more about reconstruction options (DIEP) as preference.
  5. Pushed for chemo as ITC were found in one section of a lymph node.

Then i would know i was as aggressive in my treatment as i could possibly have been and not made quick decisions based on limited information and panic.

I wanted the tumour gone as fast as possible and never stopped to ask questions of friends or medical staff about options.

I am now the complete opposite when in comes to my care and challenge everything.

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Great to see you are moving on and so am I, but I still get a boost from reading how things do change- I am certainly a lot physically fitter than I was thanks to the new advice to do lots of weight bearing exercise in both surgery and non surgery sides of my body.

I am lugging around compost sacks, mowing the lawn digging down to Australia and my garden has never looked so well maintained. I don’t have time to get maudlin and I allow my mind to stay in the moment. We can all die a thousand deaths if we start wondering

“what if???”

It’s better to think

“I can learn every day”

And turn bad into good

My my I am sounding so soft!

Seagulls. I do peck peck too so don’t mess with me.

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Hi Blondie. It’s so so reassuring to read your story and especially right now as I’m going down the 2 week route to see if it has spread. Only diagnosed in November 2023 and had radiation in March 2034. But now suffering with terrible soreness and some pain especially at night. It’s down my outer right thigh going into back and groin. My BC was a grade 2, not in lymph and not in margin. But even so I need to check. May I ask what BC you had the first time round. I am so scared to find out the results when I have the CT scan as I’m under the impression that second time round is a death warning. Just lost a friend going through the same of one year diagnosis’ which had spread to her liver and spine. If you could help me get through this x

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Welcome Kay2 well done for your first posting.

Seagulls

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Would that be 1994 - your first diagnosis? that is about ten years before my first diagnosis. That was 2003, the year you were first treated with herceptin after you were diagnosed with secondaries.

I am glad you enjoy such healthy food and live a good healthy life too courtesy of herceptin. It has been a wonder drug for people whose cancer is controlled by it. I remember someone who campaigned for it to be prescribed more widely in its early days.

Onwards and upwards

Seagulls

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Brilliant! It’s so good to hear of longterm survivors and what their particular journey looks like. It is so difficult with what does and doesn’t work because we’re all different. One doctor that I have recently discovered seems to feel as I do about what kind of disease cancer is - a metabolic disease and not a genetic one. His name is Dr Thomas Seyfried and if anyone would like to check it out - here’s a link from last year: https://www.youtube.com/watch?v=nGo0mtPX-JQ He believes that cancer death rates could be halved in 5 years if cancer were being treated as a metabolic disease - just as Otto Warburg thought in the 1920s. It offers a lot of hope…

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I will have a look soon. Another idea n health research is that some disease is related to inflammation in the body. Alzheimer’s is one illness which may have this as a cause.

Some medical advances have happened because someone noticed a relationship no one else did. You can get sudden leaps forward. So as my mother would have said

Nil desperandum (never despair in Latin, she does like speaking in riddles)

Seagulls

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Hi @carol

Sorry to hear you are in pain and worried about spread. You’re not alone, I think we all think the same with every pain or niggle. I hope you get a clear CT.

You may find it helpful to call BCN nurses for a chat

  • Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
  • Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.

I have some chest wall pain and swelling and have to take pain killers. The breast care nurse says she thinks it’s ok and time will improve it but I am awaiting a lymphoedema appointment. If no improvement in 2 weeks she wants the consultant to have a look as well. At least we are being listened to.

Take care :smiling_face_with_three_hearts:

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