Hi, im shortly having a double mastectomy.
I asked my doc how will i be checked in the future for reoccurrence if i cant have a mammogram.
They said the NHS doesnt provide any screening and that i will be shown how to check myself.
Im having implant reconstruction. How will i be able to check myself and will i be able to do it thoroughly enough?
Should i be looking to pay for a private MRI every couple of years?
How will i be able to not worry about this.
I know i have a way to go, as ive not even had my op yet, but im trying to see a future that is as normal as can be.
Thank you for reading my post and for any support or info you have
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Hello. First of all, I hope all goes well in your upcoming op.
I had a double mastectomy seven weeks ago and saw my surgeon two week ago when I got my final pathology results. We are private so not sure if itās the same on NHS pathway, but he said I will be seeing him again in six months just to follow up, I presume. Iām just on Letrozole and then Tamoxifen for 10 years. Iām not sure what happens after that.
I asked him about self checking and he said to pay attention to the scars and just feel for any changes. I should add, I havenāt had any reconstruction.
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I think it may be possible to have ultrasounds on the breast area -they can never completely remove all the breast tissue . Might be a good question for Ask our Nurses your questions ?
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Please get ultrasounds as a check. I had a yearly ultrasound and it is where they discovered an enlarged node that unfortunately was positive. This saved me as sometimes itās not possible to feel them enlarging. Also check scarring area for any bumps. Best of luck
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Hi springer5
I have the same concern/anxiety. Double mastectomy 2 years ago (elected no reconstruction).
Mammograms/ultrasounds no longer an option with no breasts. I was also sent away with ākeep vigilant and report anything suspiciousā. Great. Thanks. Is that it?
When I developed a very tender rib I asked for an MRI, twice, with supportive letter (template) from Lobular Breast Cancer, as lobular is a very discreet cancer. No dice.
So, I too, think I will be paying for private MRIs and other scans now and then (since the NHS is on its knees and not offering the same standard of cancer care it used to). Thatās all very well for those of us who can (just about) afford it.
I also developed a constantly-itchy spot along the scar line (I know, exactly what they tell you to look out for) and was told it was probably a dissolvable suture which hadnāt dissolved and was irritating my skin. I asked if they would go in and dig it out for relief and they snorted that no surgeon would disturb the area again for that. Itās still itching ā¦
I also wanted to discuss blood tests for tumour markers and any other possible monitoring procedures but, to be honest, at the time, I gave up trying to get any serious conversation out of 3 oncologists and was beaten into submission, left with my worries.
Angry? Can you tell?
I have my face-to-face, 2-year follow-up at the end of this month (if it doesnāt get cancelled or changed into āa telephone consultā 
). Iāll try again. Or ask for a referral to The Royal Marsden cancer specialist hospital, where I used to be registered for annual mammos re family history until I reached the cut-off age (60), ironically 2 years before diagnosis ā¦ not that mammos are much good at detecting lobular. Had a āclearā one a few months before I referred myself with suspicious lump on the opposite breast - that turned out to be mucinous cancer of less concern. Only then did my wonderful surgeon put me through rigorous testing on the historically more troublesome breast. Finally, several ultrasounds and a series of biopsies diagnosed the invisible lobular web.
By the way, I found the double mastectomy itself (without the reconstruction, admittedly) the most straightforward and least troubling aspect of my entire experience ! So hopefully you will similarly sail through that. Wishing you the very best 
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I had a mastectomy with immediate reconstruction (silicon implant). I was worried of a recurrence that could develop behind the implant and keep unnoticed. My plastic surgeon said that they removed the skin from the muscle to prevent this from happening and he wasnāt concerned about a recurrence behind the implant. Iām checking my breast regularly. I look at the scars carefully as I heard this is where recurrence could happen and my oncologist checks my breast every 3 mo. also, iām lucky to have annual MRI. For what a recurrence may look like after a mastectomy (no reconstruction) you can check the posts from Dr Liz OāRiordan. this is so helpful as I had no idea what to look for. hope it helps and best of luck with everything 
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Hi Marie
Thanks for the useful pointer to Dr Liz OāRiordan on this topic. May I ask how you managed to qualify for and secure annual MRIs and in which country (or UK area) do you live ? Thanks. 
@MistyK : I live in Switzerland. I donāt know whether all patients get an annual MRI. I think I qualify bc I have a high risk of recurrence (stage 3) and family history.
Switzerland; that explains it ! Thank you, Marie.
Hi, on Thursday eve i joined the Breast Cancer Now seminar about reconstruction, which i found very helpful.
I asked this question and the Doc was reassuring.
He advised that 90% of reoccurances can be found by checking your self. Most likely place will be a lump felt in the skin ontop of the implant. Reoccurrence on the chest wall is rare, he advised that when I have my mastectomy to ask how close to the chest my tumours were and how clear the margins are. It does also depend on stage/grade.
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Thank you, I will def ask as I worried about that too.
Thank you, im not surprised that you are angry. Your concern isnt being taken seriously. I just wish they understood the anxiety and worry that everyone goes through and how this affects our health and lives. I hope your check up goes well.
If the NHS wont do an ultrasound or MRI, i think Iāll have to pay for periodic private ones, as i cant see that i will get peace of mind.
As @SL255 says the enlarged lymph nodes is also a worry and you cant feel for it yourself.
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Thanks for your sympathetic response. Fingers crossed for both of us, eh? Good luck x
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Hi @marie911 marie911 can I ask how long it took for you to feel like you had recovered from your surgery? My daughter is going through the same mastectomy (double with implants). They advise 6 weeks but with a young toddler running around is this reasonable? Thank you.
@usuallyhappyme : I think 6wks is about right (but I only had 1 mastectomy). I had to keep the surgical drains for 10 days and this was the worst. I couldnāt sleep well and it was difficult to move around with the drains ( I had 2 drains, 1 in the breast and 1 in the armpit). During this time, you canāt do much and you have to be careful with the drains, specially with a toddler running around.
I was told I could start the physiotherapy 2-3 wks after the surgery and once I started physio, the recovery went very fast. Good luck to your daughter. Wishing you all the best.
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Thank you for replying so quickly. I really appreciate your input. I only hope itās a smooth one for her. Best of luck in your onward journey too and thank you again xx
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Hi, @usuallyhappyme I had a double mastectomy with implant recon and SLNB on the 26th sept, about 7 weeks ago.
Its been a rocky road as i had an infection one side and needed a further op. Of course, hopefully, your daughter wont have this. The good side has healed well and im pleased with it.
Surgery- was 4-4.5 hours and i was sent home the same day, the drains were removed the same day.
The first few days were tough and i had support at home, i expect it will be tougher for your daughter with a little one.
The double mastectomy means you dont get to use your good arm/side as you dont have one. I couldnt lift my arms very high and needed things in reach. We bought pints of milk as they are lighter and i like my tea!
Sleeping - was hard as i had to lay on my back, i had lots of pillows.
Its tricky getting up without using your arms as you shouldnt strain or do any heavy lifting for quite a few weeks.
I still havent got full movement, strength back in my arms as i have cording, which is quite common. Im doing the exercises daily and it is improving.
I wish your daughter the very best and am happy to answer any questions if you have any, take care
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Gosh, thank you @springer5. My daughter just wants it over with. Myself and her husband will be with her for the first week or two and we can juggle family on both sides to help with her and little one after that.
So sorry to hear youāve had a rough time but at least are through the worst of it.
Roll on the New Year. 2024 can do one!
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