Need input on cousin's ILC mets

nash

Hi, girls, I need some insight. I posted this over on the mets board, but haven't gotten lots of feedback.

I have a distant cousin who has been Stage IV with ILC mets to the intestines for some years. She had a good run on Xeloda for several years, and the tumor in the intestines is not visible on scans or by physical exam (her gyno had originally found it).

When she orginally was diagnosed with mets, her TMs were in the 3000's. They'd dropped down to the 100's for the years she was in Xeloda, but started to creep up last year. They're between 275 and 300ish now.

Because of the TM increase, her onc switched her from Xeloda to Abraxane. The TMs have kept going up, however, and since that chemo switch, he is now switching her every 4-6 weeks to a new chemo. These frequent switches mean, of course, that she is rapidly running out of options. She will start Ixempra tomorrow.

The thing is, other than the rising TMs and a CTC assay of 25 (yikes!), she is NED on scans. So where is the beast hiding? I know ILC is hard to see on scans, but still. I know she's had  PET/CT within the last year, but I think her latest scan was just a CT.

If it wasn't for the CTC of 25, I'd suspect that she may not have active mets. But with a CTC that high, she must, right? I just hate to see her suffering through the chemo and using up her chemo options if she doesn't really need to be on chemo. She's used up all her HT options, too, so pretty soon there's not going to be anything left to try.

I don't know that I have a specific question--I just wanted to get people's thoughts on the situation. Any insight you can give me would be appreciated--thanks in advance.

nash

bump--Matic, do you have any ideas on this?

matic22

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:)))))

nash

Hi, Matic--thanks for the reply.

CTC is the Circulating Tumor Cells (or Count) assay.  Anything over 5 is considered indicative of very active disease. Hers has been hanging around 25.

I double checked with her, and the scan she had done a couple of weeks ago was an abdominal and chest CT, on what is supposed to be a state-of-the art machine.

I talked to her today, and they are sending her for an MRI of the spine b/c she has had severe back pain. They thought it was a unrinary tract infection, but the culture on that was negative. So perhaps she's had bone mets all along that aren't showing up until now. We shall see what the MRI shows, if anything.

She has tried all hormone therapy options already. Oncs don't seem to want to retry any of them.

matic22

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

nash

Thanks, Matic. I'll let you know what the results of her MRI are. I have a feeling that she's one of those ILC patients who just doesn't have anything show up on scans, even though it's there. My instinct is that it's in the lining of her intestines or peritoneum, since the first metastatic tumor had been palpable in her intestine years ago. She's been Stage IV for some years now.

 I will encourage her to retry a hormonal therapy, though. There's nothing to lose, and all the chemo seems to be succeeding in doing is making her sick from the side effects. And I'll mention the Iressa to her, b/c I know that hasn't been brought up as an option yet.

Glad to hear you'll start your mom on Zometa. I've been on it since January of this year--so far so good!