Recurrence Rollercoaster – #2 Headless chicken

A quick re-cap for newcomers to this blog:  I was diagnosed with breast cancer (Stage 1) and spent approximately 1.5 years doing alternative treatments, but the tumour kept growing so I had a mastectomy.  I woke up from the mastectomy to find my left arm paralysed because of nerve damage (to the brachial plexus) caused by tractioning of the arm during surgery.  I had to have further surgery to release the nerve and because of that, I had no conventional adjuvant treatment.  Nine months after the mastectomy, the cancer recurred.  This is a summary of the options I was exploring after the recurrence.

We all want tidy endings to healing journeys.

We’re programmed through myths and story-telling and Hollywood Blockbusters, to expect tidy endings, happily-ever-after fairy-tales.

With the recurrence, it was as if the story I was writing for my healing wasn’t coming through. I know loads of people who have done the surgery- chemo-radiotherapy route and the cancer vanishes and they live happily ever after, in remission for the rest of their lives.

But I was on a different story track.

Writing this with the luxury of retrospect, I was running around like a headless chicken trying to find ways to get rid of the cancer.



I had been on tamoxifen after the mastectomy, but with the recurrence, it was obvious it wasn’t working. My surgeon wanted to put me on a total oestrogen blocker, i.e. Zolodex,.

I told the surgeon I’d had friends with breast cancer who had had their ovaries removed, and had hysterectomies, in order to stop estrogen production.  He gave me a look and said that in view of my accident-prone nature where surgical procedures were concerned (mild understatement), it would be better to avoid drastic surgery and any risks (e.g like waking up with a perforated bowel). He felt that Zolodex would give as good an effect as removal of ovaries.

It would be a question on building on this treatment by blocking the ovaries and also an aromatase inhibitor.  I don’t know why I was so reluctant to do this at this stage.  I think I was still fighting against the use of chemicals and artificial means of inhibiting the cancer.


I discussed the possibility of chemotherapy.  But the difficulty in chemotherapy is that there was no guarantee it wouldn’t be neurotoxic and I had a nerve injury to the brachial plexus that was still healing.  I discussed chemotherapy with the nerve surgeon, Mr Sinisi, and his explanation was that when a person with 100% nerve function has chemotherapy, and the chemotherapy damages say 35% of the nerves, the person can still function. However, I didn’t even have that 100% buffer zone as the nerves were already damaged.

There was also the issue of latent toxoplasmosis which could be activated if chemotherapy depressed the immune system.


The surgeon wanted to remove the cancer at the nipple and the bump and the scar line where the tumours had appeared. He felt that the fact that was recurring in this pattern told him that it was an aggressive tumour but the question was: if it was an aggressive tumour, it was behaving in an unusual way because there was no systemic spread.  And to have something seeding along the line like this was most unusual.  I pointed out to him that everything that happens to me was unusual.  Like having a paralysed-arm-after-a-mastectomy type of unusual.

The problem about removing the tissue is that the cancer could recur again without adjuvant treatment.  So all those articles you’ve read on complementary therapy sites are true – a tumour is cut and cancer cells are released into the bloodstream, even with clean margins.  The surgeons say clean margins are the gold standard, but in my experience, clean margins guarantee nothing.


If I’d had the money I would have dashed back to Hallwang.  But I was up to my neck in paying off the bills from the previous year’s stay there.  So it wrenched my heart, but I couldn’t afford it.  And I was ambivalent about Hallwang because the then resident oncologist had suggested full-blown FEC-T chemotherapy (which causes nerve damage, and yes, they were aware of the damage to the brachial plexus).  So it made me wonder if they really knew what they were doing.


Yep, I was exploring that too, but everything cost a lot of money. And there was the air-fare and accommodation to factor into the equation.


Yep, apparently there was an oncologist (Professor Angus Dalgliesh) in the UK who was working with Prof Dr Nesslehut in Germany, on bringing in Dendritic Cell vaccines in the UK.


More details on their way …



2 responses

  1. You are a very courageous person in a complex situation. I hope you find the information and resolution you deserve. I understand very well re the financial aspect, having been in a similar situation but don’t get too hung up on it. Some of the most powerful healing is free. I hope you can keep your mind focussed on recovery and know that you are not alone. There are many like me who are sending you their love and best thoughts for your full and complete recovery.

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