Sharing my experience on detecting a recurrence

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The first time I was diagnosed was end of July 2008, due to a nipple bleeding. After two biopsies I was told that it was DCIS. After a real long wait, I finally had a mastectomy on the left breast with an immediate DIEP reconstruction. I recovered fast despite the 15 hours surgery due to a complication. No lymph mode involvement - thank goodness. The post surgery path lab result showed that in addition to the DCIS there is an invasive ductal carcinoma too. It is grade 1, ER & PR positive and HER2 positive. The prognosis was very good according to the breast surgeon, no need rad nor chemo, just take tamoxifen for 5 years and I would be fine. It was very encouraging and and I moved on with my life.

I did the routine annual mammogram and the result was always good with exception of some calcifications which is ok I was told. July 2014 my right breast hurt a little for a few days and for some strange reasons, I had a very strong urge inside me to do more than just a mammogram, so I decided to pay and have an MRI done end of July despite the fact that my mammogram was not due in Dec.

During the MRI, the radiologist also performed an ultrasound scan on both axilla and at that point, she pointed out to me that there seems to be problem on my left underarm lymph nodes,she said she did not like the look of it. I showed the report to the consultant who said that there was probably nothing and arranged a biopsy immediately. When the biopsy result is back I was told that I had metastatic adenocarcinoma. I also arranged to have a PET/CT scan and a brain MRI, which was clear. I then had an immediate lymph node clearance surgery on my left underarm. The path lab report shows that there are cancers on two nodes, ER & PR negative, but HER2 positive, one cancerous node measuring 2.5 cm.

I queried the oncologist and also asked the surgeon why there is only mammogram monitoring and no other scan method to examine the underarm nodes following mastectomy, particularly since breast cancer is very closely linked to lymph nodes. To which they all said that the protocol or guideline for monitoring is only mammogram, which obviously fails to spot any cancer if it appears elsewhere.

What I want to share with you is that you have to listen to your own instinct sometime and go over the norm. You may even need to sacrifice to pay for your own MRI and scan if it is not on offer by the NHS (they are already so over stretched) to save your own life. Had I not pay for my own MRI & scan or just carry on with the annual mammogram, I would not have been here today. It is hard to cope with the recurrence particularly I moved on from cancer. Now it’s back.

I hope the above experience helps to give you an insight that sometime we need to go extra yards.

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Hi,

 

thank you for sharing your experience.  I was diagnosed with high grade dcis 8.3cm, had a left mx slnb and LD flap recon, thankfully nodes were clear.  I worry about how I would know if something started up again.  One of my lymph nodes was very enlarged according to the radiologist but came back clear, though it was enlarged I couldn’t feel it and it only showed up on the ultrasound.

 

I have an appointment with my surgeon in a few weeks so think I will be asking him for further explanation about what to look out for post mx.

 

I would happily pay for additional checks and scans.

 

Wishing you well xxx

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Thank you so much for this valuable information.  I hope you are getting better, I have a work colleague who has now beaten this horrid invasion twice, so let’s all keep positive.  I know it’s hard, but we must try. LOL xxxxx

 

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Misspiggy: thanks for sharing your experience. I do hope you are doing OK

 

I have recently posted  about MRI screening instead of Mamography and wondered if I may ask you a few questions?

 

May I ask how much the breast MRI cost? Did you need a referral and if so, from whom? once the MRI was done are the results reported back into the NHS system and you are under the care of NHS from then on?

 

many thanks

 

 Helen

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Misspiggy,
Thank you so much for sharing. I had been wondering about this in part due to being informed by a breast care nurse that most reoccurances are picked up by self examination rather than annual mamo post initial treatment.
For what its worth, I could feel my cancer lump from within, as a form of pinching, whether on a nerve or blood vessel I have no idea. I felt it before actually finding the lump.
Hope treatment and your response to it goes as well as possible and thank you for sharing with us at this time.
Seabreeze

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Hi Misspiggy,
No recurrence so far, hope it remains that way…I was just trying to convey that sometimes, it’s possible to feel something pinching within your body, without physical touch. For me this was a precursor to finding the lump. Thought it may be helpful for some while on subject of checks by scan or otherwise.
Seabreeze

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Hi ladies,
I met with my consultant and asked about reoccurrence & what to look out for, he told me that as I’d had a mastectomy & 2 nodes removed were clear reoccurrence was very unlikely.
I also asked him to check what I thought was a new lump in my other breast, which he said felt like normal tissue.
I have an appointment at the genetics clinic next week so I’ll wait to see what that brings as well xx

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Hi Seabreeze,
So glad to hear you have no reoccurrence :slight_smile: