Just wondering- If you have an MX how do they monitor the area as presumably you can’t mammogram the flat bit or little bit of flesh left if there is any - plus there’s no breast tissue so what are they checking for. do they ever offer ultrasound which is recommended for dense breast tissue anyway? My mammo did not originally pick up a large area of DCIS around the lumps so my WLE was then followed by MX so I am worried if I had this reccur in my other breast it may not get picked up again & nothing would be found until it was invasive again (hoping it doesn’t happen but we never know!).
does anyone know if you can request ultrasound as well or even I would pay privately to get it checked if that were the best option??
Hi, I am in exactly the same situation as you. Ive had mx and recon for dcis and am due for my first year mammogram in March but im worried about the recon boob especially after reading some posts here that it can come back in the mx side!!! I have asked whether I can pay for an ultrasound through the local Nuffield hospital (waiting for them to get back to me!!!) and as a last resort then i thought i would sick and cry at my doctors until he agreed to send me for one!!! Im actually disgusted that with all that we have gone through we have to fight for a test to give us piece of mind!! Please let me know if you manage to find anything out and I will certainly do the same!!!
I had a double mx without reconstruction in Dec and asked at my post op results meeting last month how I would be checked in future given that I will not have mammograms. I was told that it will be done through clinical examination. I had a lot of stuff to take in at that meeting so I didn’t query further but I will bring the subject up again at future check ups.
I would also be interested in what others have experienced.
I am 18months post mx. I am told after an mx they don’t do any ultrasounds etc unless there is a clinical reason to do so. On other threads on here there is clinical evidence that an ultrasound will not pick up problems any quickly that we can just by knowing our bodies and what is not correct. Also if you do too many tests like ultrasounds they can bring there own risks.
I do understand as I am only 18 months post op, just got my last herceptin in 3 weeks time. But we have to have faith and get on with our lives.
Hi,
No they dont/cant do a mammogram after a mastectomy.
I had a mastectomy 14months ago and am awaiting reconstruction this year. I had a 1 year mammogram on the ‘good’ side in November and the bcn did a full manual examination on both sides after. That examination will be done every six months. Have been told they dont do mammograms on reconstructions either.
Hope this helps
x
It is possible to do mammos after a recon but they can be very difficult to read. The best imaging available is MRI, but many centres have limited availablity so it is restricted on the NHS. My story is complicated but I had a “recurrance” in my recon breast (later shown to be a remnant left during my original biopsy) This was found on MRI which I was lucky to get. I would be willing to pay if necessary. But the costs are high ,around £800.
Hi
As other posters have said I’ve not had a mammogram on recon breast since dx. I have my remaining breast mammogrammed, and both sides (plus collar bone area ) examined by the consultant at my follow up appiontmnts. I’ve been told that any recurrence on my mx side would be on the chest wall (now above my implant) and since the skin is thin it would be easy to feel. I have felt changes and lumps a couple of times on my mx side, and have had a very quick and reassuring response from the taem-I’ve been examined very quickly by the BCn’s and referred for a consultant examination and u/s on the same day when it was once felt necessary to double check.
Hope this may help.
C
I had mx and LD Flap recon in Dec 2009. At end of May 2010 had 6 month follow up (with surgeon doing a manual check). In June I found a lump in recon breast, but GP said was nothing but a fatty lump. Left it; it got bigger. Went back to breast clinic by finding surgeon’s email address and it was stage 2 grade 3 cancer in the reconstructed breast. It was confirmed by ultrasound and biopsy. So now halfway through chemo/Herceptin and due to lose the reconstruction, then rads, then Tamoxifen for a few years and maybe a new boob.
So, from my experience, a recurrence can be in the breast itself and it can be confirmed with ultrasound - and an ultrasound is cheaper than an MRI. Anything found via either of these will need a biopsy or further tests to confirm it. (eg: My MRI showed a liver lesion, that actually wasn’t a cancer when it was checked)
Once I’d be diagnosed again, I was told that ‘near the scar’ is the most likely place for a recurrence with the chest wall being another likely area. However, it is also true that most of the lumps found in the reconstructed breast and near the scar are actually fatty lumps.
But the chance of the type of recurrence I’ve had is only 1%, so very unlikely (or unlucky!). Trouble is with this cancer nonsense is that you get rid of one worry, just to fall into the next one.
Please, Please, push for medical testing on the mastectomy area. Although doctor’s and the medical community say it’s not necessary because the recurrence is less than .1%, you must not take NO for an answer. My mother was a 17 year survivor of breast cancer. She had a mastectomy in NYC and was never check with an MRI or ultrasound, only physical check up on the reconstructed breast. She moved to Florida and her new dr. had her check (ultrasound, and MRI) the reconstructed breast. She had stage 1 cancer again. She is fine now. If she didn’t move to Florida, I’m afraid her life would have been cut short, because of the attitudes of the medical industry. When she called her doctor in NYC, he said that the Florida Doctor’s were looking for the needle in the haystack. He said that her chances of getting cancer in that breast was less than .1% (My mother did not have cancer in her lymph notes). Well DOCTOR, she did have cancer again, and she is in the .1 percentile. I was so angry to hear the attitude of her old doctor. When he received her test results, he wouldn’t even pick up the phone to talk to her. She called him 3 times, and he never called her back. I guess his God complex, got in the way, and he couldn’t deal that he was wrong.
lizi - I do hope your mother is doing well, and I can fully understand your fury and heartache. The point you make is truly valid - statistics basically, mean nothing. Statistically, an awful lot of us shouldn’t be here, too young/no family history/etc etc… so statistics have already done us no favours.
In a strange way, it makes me question whether having a recon is sensible at all… if it would disguise any possible future recurrence? Still, the flip side is that I don’t want to spend the rest of my life shrinking from the shadows… and if I’d feel better with two boobs again, then it prob. is worth it for my own self esteem. Self examination seems to be the bottom line… that, and not taking ‘no’ for an answer.
Hi all, We had a similar discussion in the DCIS forum, under ‘MRI Effectiveness High Grade DCIS’ - worth a look as there’s some interesting stuff on there. I think we should be pushing for MRI scans, especially with the research on ‘invisible’ DCIS with mammogram. It is quite complicated (as usual!) though… All the best, Lynne x