ATTENTION kasper, sunlover100, Milly_Molly_1 and Katone
Slightly annoying that BCN closed the thread with your posts re the above so quickly, before I’d had a chance to respond.
After mucinous bc on the right (referred myself re lump) and the more sinister lobular bc on the left (found only when my surgeon thoroughly investigated the long-term discomfort on the left breast that I subsequently reported to him), I chose to have double mastectomy, no reconstruction.
I had been having annual mammograms for many years through the ‘family history clinic’. None disclosed the linear lobular tumour - not even the one done as part of this investigation. There was no specific lump, just a general tender lumpiness for many years. Ultrasound was inconclusive. Finally, lab inspection of vac assisted biopsies found it.
FOUR TIMES I requested of my MDT, and was denied, annual MRI screening (or even one MRI scan). My monitoring plan for the future is … 2 years’ access in which to report any new symptoms or concerns. DUH; there WERE no symptoms of the lobular bc !! DUH; I am permanently concerned that no one is actively looking out for recurrence.
Is this another post code lottery situation ?
sunlover100 - may I ask where in the world/UK you are, to have achieved this rarely-granted screening programme ?
Katone - thanks so much for the link 
Hi Misty, sorry to hear you’re having all these issues with the medical team. Are you planning to have a double mastectomy, or have you had it already? I had a bilateral lumpectomy, and have been getting annual mammogram and MRI follow ups. I’m not sure if it would have been different if I’d had a double mastectomy though - they might argue there is less to scan?
I had my treatment at Wythenshawe hospital in Manchester, and have to say that they were very good. I’m not sure if it is a postcode lottery, I suspect it might be. However I would check if it’s different if you’ve had a lumpectomy vs mastectomy. Good luck!
Hi sunlover100 (you must be thrilled with this weather!)
Thank you for responding. My surgery was 3 years ago. Mastectomy rules out mammos (not that they find lobular bc anyway) so I was wanting to be monitored somehow.
Doesn’t seem to be any proactive way of doing that for soft tissue other than an MRI directed at a specific area of concern. (I had a particularly tender area - rib? - in the same place as where the tumour was. I was granted a bone scan and CT scan, but these do rack up your overall exposure to radiation, whereas MRIs don’t.) Just wanted the skin and remaining tissue there to be checked, but No Go. My follow-up appointments consisted of “So, how are you? Any new symptoms?” and a quick manual examination.
Best of luck with your health from now on 
Hi Misty
Yes, I am indeed loving the weather, it’s great! Sorry, I think I misunderstood you originally. If you have had a double mastectomy, I have a feeling that they don’t follow up with any imaging, it’s more a case of them checking the chest area in clinic annually. It is hard not to worry about recurrences, I’ve been back twice since my surgery 2 years ago with concerns, which have fortunately proved to be unfounded. It’s the same with any distant recurrences - any twinge and you think you’ve got mets! I’m currently waiting for the results of an MRI scan of my spine because of backache - GP thinks it’s probably muscular but because of my breast cancer history it’s better to check. So the worry just goes on… I haven’t really any more advice, other than to try and be alert for any changes anywhere in your body and get them checked out, and in the meantime try to keep busy and enjoy your life, day to day, and take each day as it comes. Easier said than done, I know!
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Thanks everyone for all your posts on this subject. I certainly feel scared that any other lobular tumours may be lurking or may appear later. ( original tumour not picked up by mammogram) . Having MRI scans are definitely something I intend to pursue. I start radiotherapy on Monday (18/8) and if the times don’t clash am joining a Teams “ moving forward- recovery information session “ with breast care team. Will report later if I get my request granted.
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Hi sunlover100
Thanks for checking in again and for your good wishes 
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