To recap: dx nov 2010 with grade 2 multi-focal lobular. Had 6 FEC and then SNB which confirmed it still in 4 lymphs. Then full clearance, mx + immediate recon with LD. 6 weeks of rads and now 5 years of Tam.
I’ve got an appt with my consultant in a couple of weeks and want to discuss the aftercare and follow up that is appropriate. For example - I know lobular doesn’t tend to show on a mammogram and so presumed that I’d be offered an MRI for my annual check-up, butI wasn’t. I had a mammogram and was told that because they’ve a previous image they can spot any changes. However, when talking to my consultants registra about it he did admit that the main reason is cost.
So what I’m asking you lovely lot is: What after care do you have? If you had lobular do you have MRI?
I read a post the other day that sounded like the lady had a full ct scan every year - does anyone else? Does the USA have better survival rates because they do thisbit differently or is it something else?
I’m more than happy to be reassured about my aftercare if there are medical reasons (too much radiation causing other probs etc) but not if it just boils down to cost. I would pay if I thought it would help.
My recap: 8cm aggressive grade 3 IDC/DCIS 3 FEC 3 T , shrank to 2 cm, mx, axillary clearance and immediate LD recon no implant, 3 nodes affected, 25 rads (50 Gy) and 5 yrs Tamoxifen
I have 6m checkups for 5 years - alternating BCN and (apparently, yet to test!) surgeon. Two yearly mammo on real breast but not sure what they do to check recon side (please tell me they won’t try to squish my recon in that machine! hope they do more than just ‘feel’ though). If all NED at end of five yeras, move to annual checkups and 2yr mammo. If all OK at end of ten years discharged. Any time phone access to BCN for duration.
I know that WLE ladies get annual mammos at my hospital - I assume the reason Mx ladies don’t is we have less left to recur in?
Other Scottish hospitals differ, and it may be my aggressive grade 3 status means more frequent checks than others? See my surgeon end of Feb so will know more then.
Hi, also ILC dx 2010 (45 yrs), multifocal gr 2 3cm+4cm, fec/tax (4), mx&ld recon, here the follow up for ILC isn’t any different from IDC. Annual mammogram, that’s it. Not very reassuring, for my first annual check up I fought to have a MRI. In terms of seeing the surgeon or onc, I have no more visits scheduled, it’s open access, if I am concerned, I can ring.
Hi Staycalm
I was dx oct 2010 with a whopping 4.9cm lobular tumour just 8 months after my first “clear” mammo… So like you I do not have a great deal of faith in mammograms. I had a mx with LD recon and I am on Tamoxifen
I had my first follow up annual mammo in Oct… when I explained my worries they carried out an US to put my mind at ease. All my treatment has been done through our private medical insurance and my consultant does not feel that a MRI is required …he said that mammo is still the ‘gold standard’ for detection.
I took some comfort from this after all he would be able to charge the MRI to my insurance if he thought it was appropriate
E x
Im ILC with ld recon, and have now undergone 2 mammos on the reconn side, I was so scared, thought it would burst, it took the radiographer ages to fix me on the plate, but surprise ,surprise no worse than the real boob Being squashed,I was so relieved. sure yours will be fine.
Hi,
I my experience if your cancer showed on a mammogram follow up would be annual mammos for five years then reversion to the NHSBSP if over 50 yrs or two yearly until 50yrs. If it was occult and therefore did not show on mammo MRI would be done on some cases. All a bit breast care team or hospital facility dependant.
Annual CTs are not a routine scan unless you have a problem.
Things might have changed but as you can see there is still not a standard follow up. Hospitals and Consultants vary. Some discharge all patients from follow up at two years with open access if there is a problem and others five. The reasoning behind this is most problems are found by patients themselves not at routine follow up.
I hope all is found to be Ok
Cackles
Hi,
I my experience if your cancer showed on a mammogram follow up would be annual mammos for five years then reversion to the NHSBSP if over 50 yrs or two yearly until 50yrs. If it was occult and therefore did not show on mammo MRI would be done on some cases. All a bit breast care team or hospital facility dependant.
Annual CTs are not a routine scan unless you have a problem.
Things might have changed but as you can see there is still not a standard follow up. Hospitals and Consultants vary. Some discharge all patients from follow up at two years with open access if there is a problem and others five. The reasoning behind this is most problems are found by patients themselves not at routine follow up.
I hope all is found to be Ok
Cackles
I’ve had my first annual mammo but they only did my real boob and not Babs (recon). I understood that this was because Babs is muscle and implant and not breast tissue, meaning that the mammo wouldn’t pick up anything because of the different type of tissue.
Im down for annual mammo and annual appts with consultant and Onc, meaning I see someone every 6 months. I’ve had my Onc appt but didn’t see her I saw someone who hadn’t met me before. Im not happy with this and am going to ask my consultant about going private with my Onc but keeping her for the mammo/physical side. If not I want a guarantee that I’ll see her next time.
Thanks for the update SCACO - hope you get something satisfactory sorted. I was orginally told after rads that my pattern would be like yours (except 2 yrly for mammo) but onc’s registrar discharged me back to surgeons, so that’s why I see them twice a year. My BCN said for this group of hosps it only tended to be people on clincial trials who got long term onc followup, everyone else is via main breast clinic. Although my onc was brill (and gorgeous!) I’d rather stay with the consultant at the main clinic than see someone I don’t know at the onc place.
Morning SECO,
I am sure you are correct. If you had a mastectomy and reconstruction as you describe with Babs they would not have done a mammo because it is not breast tissue.
It is horrible when you come away from an appointment feeling unsatisfied. Unfortunately in the NHS there is no guarantee that you will see the same person. Often follow up is done by the more junior doctors in the Breast Team and the Consultant sees the new patients and those with problems. In an Ideal world they would see everybody but realistically it is impossible. Seeing the Oncologist privately icuold mean a large bill for the cost of investigations and treatment if they are necessary. It might help to give the Helpline a ring. There is a publication on follow up you can download. Six monthly follow up shared by surgical and oncology teams are the same as I am having.
So more marshes and Gremlins to come!!! Thank you so much for starting the thread.I love it.
Cackles
For me the issue is the “sneaky” nature of lobular bc, as it occurs less frequent the team may not have as much experience in treating ILC, and as it has a higher risk of being bilateral I am concerned that a) the annual mammo won’t find it b) any possible mets spread may be occult, too, due to the more unusual places it spreads to.
I know it’s not cost effective but regular MRI’s should be part of lobular follow up in conjunction with mammograms.
hi staycalm
i don’t know about the mammogram vs mri thing, but the consistency of care thing is easy
when you next go to clinic, tell the receptionist you want to see the consultant
they may try & fob you off, but just insist & say you know that means you may have to wait longer (if they’re really horrible they’ll tack you on right at the end of the clinic)
take a good book, water, a banana …!
I don’t have lobular it was IDC and a big one at 6cm we knew it was in my lymph nodes they took 13 out of those only 1 was infected with cancer I had neo-adjuvant chemo then mx with clearance still on herceptin/tamoxifen combo probably will be for as long as they work as I also have secondaries on my lungs these are now tiny and stable thankfully. The reason I’m posting on this thread is that last friday found out how on the ball my team are, I am currently doing rads and on day 3 I became very ill violent vomiting and massive migraine I phoned the hospital and told them I was too ill to come in they told me to come in anyway as the dr’s would want to see me the upshot is they put me on a ct scanner cause they were worried I either had brain mets, meningitis or it was just a migraine I was on that CT scan bed so quick and within the hour they had the results (no waiting 2 weeks!!) I actually saw my onc and his registrar straight away, they can move fast when required all of this was a shock and I am clear for both brain mets and meningitis, I have a CT scan every 3 months, obviously this is due to the fact that I have secondaries, but my point is they do move fast when it is needed and especially after friday’s experience I do feel looked after and watched closely.
Love and light to all
sarahlousie xx
Hi Sarahlouise, it must be reassuring after your last experience to know that your team takes immediate action. I used to be affected by migraines in my monthly cycles like you describe and had anti sickness meds (the same they gave for chemo) and it is utterly draining! So pleased for you though the brain scan revealed nothing sinister. The problem with lobular bc is it can be difficult to be picked up, it’s biological behaviour is different to IDC hence its often spread and much further than originally thought due to its occult nature. Balancing act of vigilance versus over treatment in terms of scanning!
hi…what do they do at check ups if u have had an Mx? I was diagnosed in may, 11cm lobular tumour, neo chemo, mx, now nearly finished rads and on tamoxifen. Pathology reported cancer in 9 nodes and tumour still 9cm at op. I am worried now that I won’t get a ct or MRI scan, how else would they pick up any spread ?
Lorna, like it’s been mentioned before, it really depends on your team, you most probably have check ups at regular intervals with your onc/surgeon, annual mammo on the remaing breast and further investigations if you present with new/persistent pains or symptoms that might suggest mets. However, they are not “going to look” for mets if your are not symptomatic. You’ll probably have the follow up discussion with your team at the end of active treatment.
Re the recon on lD side, I was told by BS, that she does mammo on recons to look for calcs and micromets, must say I was puzzled,but thats her protocol, all seem to have own methods of aftercare to boot this disease out .