Need input on cousin's ILC mets

Hi dear nash!

I am sorry but I do not know what CTC is:_I do not know the abreviation...TM is tumor marker, but what is CTC??!"I have tried to get to know it, but can you please tell me what that means in your country.I will then discuss this with you...

On the other hand I would never do a PET/CT scan to some lady with suspicion on ILC mets because I know that ILC does not always lit up on this scan, I believe that CT is the best opiton. In May mum had some tests done, laboratory tests and I ordered also tumor markers, because I know that for hormone dependent breast cancer CA 15-3 is quite good marker.I also did CEA marker, which came back 14.1.(normal is up to 4).All other markers, including CA 15-3 were very low, very normal.I did panick a little, but then I asked many our specialists at our institute about that and I also have done a lot of research on this, and CEA can be high in benign situtations, for example in patients with asthma, which my mum has it.She has asthma for several years,In July I reordered this CEA test again and it came back 9, so lower than before, without changing therapy, which means it is really a benign process at this case.I will not go on PET/CT scan for that.Mum is feeling great, she has no signs of any troubles, she also had gynecological and rectal examination, and everything was fine.I am the one of doctors that rely more on clinical status and biology of the tumour than scans.Scans are ordered when indicated, and not just to see if everything was ok.I ordered her x-ray of lungs as weel.All was well.

I want to tell you with this mine case that I would not do the PET/CT scan to someone with ILC.-Probably never.My mum has a friend who was diagnosed with ILC CLASSICAL TYPE 13 years ago and she had done this PET/CT 2 years ago because of raising tumor markers(CA 15-3).She felt fine, healthy, US of abdomen was always fine, x-rays was fine, bone scan was always fine and they ordered her a PET(CT scan,.One doctor-radiologist wrote than that ILC does not lit up on this scan, so please she went to that radiographic session meaninglessly.I would rather do a CT of abdomen because classical ILC tends to go to abdomen, if there was bone pain, I would do bone scan, but not PET CT.

I think your cousin has some active mets because ILC is quite often seen with raising tumor markers, especially if hormone dependent. I would order her a CT scan of her abdomen to check if there is something, if not, then I would wait. I would not change chemos all the time, because you need it for late events.If cancer is hormone dependent, she needs to be treated with hormonal therapy, maybe try with Megestrol acetat, if she has not had it.-I have many patients with ILC mets that respond well to megace and fail to arimidex, for example, but AIs(aromazin, femara,arimidex)are better than Megace.

I hope I answered you at least some of your thoughts.

Kind regards and will keep responding becasuse I am interested what CTC is.-

Matic:)))))

Dear nash!

Thank you for explanation of CTC!

If she has severe back pain and bone scan did not show anything, this is strange, because usually lobular lit up on bone scan, but you know-there is no 100% rule in medicine, not only in oncology, but the whole medicine. Does she have any other symptoms except back pain?Usually bone metastases present with bone pain, that never stops, usually it is worse at night, when people rest.These patients could not sleep!This is very severe sign of metastatic disease.I always say if a woman that has had breast cancer in anamnesis, has back pain or any other bone pain, be careful because of disemination in the bone!!!!!

And I think in your cousin there is a high suspicion of bone metastases, unfortunately.I know this is not a nice news but something has to go on with cancer if CTC is so high and she has severe back pain.Does she have any truggling or sohyncter disfunction?

MRI I believe is a good in detecting ILC mets.But as J have already told you sometimes there are no metastases visible on scans, indeed there are extensive-usually they are found at autopsy!!!

ILC tends to spread as it grows in the breast-very infiltrating, not well confined, and metastases are found very lately in the course of the disease, usually.

I think if a doctors only suspects some metastatis process in ILC patient, she/he has to change some therapy(hormonal) and see what is going on.I have some patients that had high tumor markers, after we changed hormonal therapy, TM went down and there are no metastatis lesions on scans.So, something went wrong-in oncology you really need to have an instinct, not just knowledge, you know;)

Sometimes hormonal AND BIOLOGIC therapy is a good combination in pretreated metastatic patient-for example gefitinib and tamoxifen.Tamoxifen is sometimes good to be regiven-so, you give tamoxifen after 3,4 years after the patient had other stuff , and even if she had tamoxifen at the beginning.This is a really hard stuff to determine the right treatment for her,. but I would never give up.I never give up-until the very terminal phase of the disease when you need to treat symptoms of the disease well-!

I think your cousin can live with metastatic disease for many years, especially if her treatment would be the right one and if her lobular is A SLOWLY ONE, which not all lobulars are,

I hope I have answered you precisely,)=

Kind regards and God bless you;)

P.S.:I think I will start Zometa treatment of my Mum in October, I have decided now!

MATIC