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Sharing my experience on detecting a recurrence

18 REPLIES 18
Diana
Member

Re: Sharing my experience on detecting a recurrence

Hi Angel,

When I had the recurrence on my lymph node, the consultant told me that he thought it was probably nothing. I had the scar tissue from previous sentinel node biopsy 6 years ago. But how can we be sure?? Only when I insist on biopsy then the path result is clear, it is cancerous adenocarcinoma. He was surprised too.

Diana
Member

Re: Sharing my experience on detecting a recurrence

Hi ladies,

It is not easy to detect early recurrence especially if it is not palpable. If you want to catch it early and do own monitoring, there is always CT/PET scan, MRI, CTC or Circulating Tumour Cells Scan, this is a blood scan to see how many circulating Cancer cells in their liquid form, then tumour markers test. Obviously if the local hospital or NHS are not providing these, then we have have to pay ourselves.

There are many people who found out that they have cancer just by random scan. Caught it early then we have more chance to deal with it.

When I was having the chemo at the hospital this week, a lady with stage 4 lung cancer who sat next to me told me that her cancer was detected by pure luck when she just went for a PET/CT scan. She did not have any symptom only coughs but did not expect that it was stage 4.

Good luck to all. Xx

Angel2014
Member

Re: Sharing my experience on detecting a recurrence

Hi Seabreeze,
So glad to hear you have no reoccurrence 🙂
Angel2014
Member

Re: Sharing my experience on detecting a recurrence

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
Diana
Member

Re: Sharing my experience on detecting a recurrence

Hi Seabreeze,

So glad that you have no recurrence. Fingers crossed.
Take care.
X

Seabreeze
Member

Re: Sharing my experience on detecting a recurrence

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
Diana
Member

Re: Sharing my experience on detecting a recurrence

Hi Angel,

How are you getting on? Have you got the result of your biopsy yet?

Diana
Member

Re: Sharing my experience on detecting a recurrence

Hi Helen,

I am very sorry to hear about your 2nd tumour, I trust that you are having biopsy and treatment now? How are you getting on? You are right it is in our interest to keep an eye on the cancer, annual mammogram cannot guarantee 100% detection, hence the necessity to pay for MRI, ultra sound, or PET/CT scan. This PET/CT scan able to see the entire body, because secondary cancer can spread to other organs such as liver or lungs.

Diana
Member

Re: Sharing my experience on detecting a recurrence

Hi Seabreeze,
I'm very sorry to hear about your recurrence. Did you have biopsy and do you need further treatment?

Seabreeze
Member

Re: Sharing my experience on detecting a recurrence

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
helenclare
Member

Re: Sharing my experience on detecting a recurrence

Hi Misspiggy

 

Many many thanks for that really useful info. I am thinking of paying for yearly MRI from now on. I've just been diagnosed with my 2nd tumour and it was only picked up on MRI. Thank heavens the radiologist was thorough. 

 

best wishes

 

Helen

Diana
Member

Re: Sharing my experience on detecting a recurrence

Hi Helen,

You have right for any second opinion or any scans paid by yourself. All you need is a referral letter from your GP. But you need to identify which doctor or oncologist that you are going to consult and arrange the MRI. There are many NHS consultants who also do private practice. The result of your scan or second opinion belongs to you because you paid for it, but which you can share with your NHS doctors or oncologist to enable them to treat you, particularly if they detect something. So if you do MRI privately, you should be given the images and the report. The private consultant will report back to your GP on their finding and the result of your MRI. The NHS are operating on restricted budget so it is difficult to approve expensive special procedure if it is not the norm, unless you have a real problem or serious symptom. What I'm talking about is prevention, not reaction to a symptom. Sometime there is no symptom with cancer, especially at early stage.

Cost wise, it varies from clinic to clinic, or hospitals. But you can always phone some clinics or hospitals and find out the cost of MRI before you start. There are links below which would give you idea on MRI cost. I hope that helps.

http://www.vistadiagnostics.co.uk/mri_scan_cost.htm

https://www.breasthealthuk.com/private-breast-screening-prices

Good luck
Xx



helenclare
Member

Re: Sharing my experience on detecting a recurrence

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

pandorra1
Member

Re: Sharing my experience on detecting a recurrence

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

 

Diana
Member

Re: Sharing my experience on detecting a recurrence

Any scanning, be it MRI, mammogram and ultrasound scan, is only as good as the skill of the radiologist who is reading it. I had a wrong mammogram reading in 2006, they said it was clear. In 2008 I had cancer. I owe my life to a skilful radiologist this year who strongly believe that my enlarged lymph node was cancerous. The consultant doubted the reading. Only biopsy can proof that. Good luck and I sincerely hope it is nothing serious but I know the worry.

Diana
Member

Re: Sharing my experience on detecting a recurrence

Unfortunately you can't have any random screening once you are being put on NHS 3 yearly mammogram. Mammogram does not completely detect cancer. Each machine like MRI, ultra sound and mammogram picks up different image and give different reading. If there is any concern you have no choice but pay privately to have MRI or ultrasound scan. I'm very sorry to hear that you have a lump on your axilla. I hope it is benign. Let us know what the biopsy result is. Take care. Stay strong. Xx

Jan2010
Member

Re: Sharing my experience on detecting a recurrence

I had a clear mammogram at the beginning of the year, my last yearly one as being 5 years from dx now going back into the NHS 3 yearly screening. I am not confident that this will detect any recurrence other than a new primary. I have since discovered a lump in my axilla on the cancer side and will see the surgeon tomorrow. I am worried.
Angel2014
Member

Re: Sharing my experience on detecting a recurrence

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

Diana
Member

Sharing my experience on detecting a recurrence

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.