update on changed cancer

[8576]

Lots of water under the bridge since I last posted. Had left breast removed because of wound that would not heal. Tissue sent for testing and came back Progesterone positive changed from estrogen positive. My young oncologist did not know how to treat this. Decided to wait until new scans. No meds while waiting. I decided to get a second opinion. I had the scans and managed to get an appointment with a very good and experienced oncologist in another city, which is a one hour drive, otherwise I would switch over to her permanently.

She said she didn't believe my cancer had changed at all and that the reading of the scan was because of the medication I had been on was to suppress Estrogen. So it was doing it's job and hence the low Estrogen level! Made very much sense. She suggested my staying on Ibrance and Faslodex. I said I didn't like the expense and we then decided to go to Xeloda alone.

Saw my young oncologist and she was sure my Cancer had changed and she was arranging a meeting with a group to decide how to proceed. I then told her about the second opinion and the thinking behind it and she thought that was a fair assessment and she would include the oncologist in the upcoming group discussion. (She knows the oncologist that I was referred too.)

The scans were basically clear except for a tiny nodule at the breast clip and one, slightly larger, behind the liver. My young oncologist decided that it would be good to biopsy the liver nodule to determine if it had changed. ??? Don't understand that thinking. It would be difficult to biopsy anyway because it is deep in behind the liver and why not the breast nodule which is easy?? And what difference does it make? No matter what the result we need to decide how to treat this.

I think she is trying to prove her thinking. Any thoughts? It has nearly driven me bonkers trying to keep on top of all this. Anyway, in the interval I am taking Anastrozole. I think I might as well have progressed to Xeloda.

Cheers, June S.

[Hidden]

Well none of us our doctors or know enough to tell you why an oncologist would make a choice to do something, but this is just offhand, but maybe the liver nodule is not the same cancer as the breast and if the breast one changed, then she wants to see what is going on with the liver met. I would think (and I have no medical experience) that the liver met could be a totally different type of cancer from the breast so she can't just rely on what your breast cancer diagnosis is. She would need to do the liver.

I just googled and found this: "A liver biopsy is a procedure to remove a small sample of liver tissue for laboratory testing. A liver biopsy is commonly performed by inserting a thin needle through your skin and into your liver."

That is like when I had a lung biopsy. I was awake but in like twilight sedation and they first put a big needle into my lung and when they could not get a sample that way, they had me turn on my back. I was awake but felt nothing. It is probably not that hard for them to do a liver biopsy. Like me, you could probably go home the same day. It's a procedure not an operation.

Maybe if the liver biopsy is different than your breast biopsy that could mean a whole different form of treatment? Just guessing though.

[8576 in reply to Hidden]

Thanks for the reply. I do understand that no one here can give me medical advice. Just thinking or experience with the same problem. I think she suspects the cancer will still be breast cancer. She just wants to know if it changed it's type as did the cancer in the left breast. At least she thought that was what happened until I told her about my referral and the consensus there.

The nodule is not in the liver. The liver was clear. The scan report says, "a small nodular density deep to the right lobe of the liver measuring approximately 12mm. in size. Slightly larger than previous."

Hope I haven't confused everyone. It took me some time to figure it all out.

Cheers, June S.

[Mariote777 in reply to Hidden]

From our experience, I concur with your assessment. We had breast cancer migrated to bone and then later on, liver, The biopsy from liver was different to the bone one, our second-opinion onco told us that cancer tumors may even be different in the same organ, it depends which tumor is chosen for sampling. Quite a guessing game they have out there. But I guess they are trying to do the best they can, trying to balance it with extra procedures. I guess it's a risk/benefit kind of thing. Too bad it is us who take all the risk :(.

[8576 in reply to Mariote777]

Thanks. That is interesting information. I agree, the doctors must have quite the job trying to figure this all out also.

If we have different types of cancer how do they treat them? My oncologist says Ibrance/Faslodex wouldn't be effective against this breast cancer since it changed it face.

The nodule is not in the liver. The liver was clear.

It is a small but slightly enlarged soft tissue nodule BEHIND the liver in the retroperitoneum area, which means the space between several organs. Apparently, not that uncommon and can have different forms.

I am not sure a biopsy is warranted but we shall see what the specialists have to say. My oncologist wants it done to see, if it is indeed cancer, what type it might be.

I am not a medical professional. All this is very trying and I am having trouble getting the right answers from the professionals as they don't agree. So I am trying to be as informed as I can be.

Cheers, June S.

[8576]

I wrote an error in the above. The change wasn't noted because of the scans but because of the tissue sample taken when my breast was removed. Just wanted to make that correction.

June S.

[8576]

Just to clarify. I have breast cancer on my left hip as well. Diagnosed when I had the breast biopsied in 2013. Cannot biopsy the hip because it would be to difficult to reach.

June S.

[Hidden in reply to 8576]

I had my biopsy in my hip. They took 5-6 samples. That was how I was diagnosed with breast cancer. They didn’t find it in my breast but in my hip. After more testing they did find a small lump in My breast. If you want the hip biopsy it can be done.

[8576 in reply to Hidden]

Hi: Thanks for the reply. I have been warned that a biopsy would be very invasive because of the location of the tumour and would not be recommended. It is apparently right inside the hip and not easily accessible. Hope you are well.

Cheers, June S.

[PJBinMI]

Somebody noted that I have experience with Ibrance and asked me to reply to you....... So, first let me mention that I am a very long timer with mbc (16 years), and have been to a number of bc and mbc conferences and have tried to learn all I can about this lousy rotten cancer. But.....I am not a medical person. And I do have a couple of questions for you. Are you saying that your onc has said that the cancer mutated from estrogen receptor positive (E +), progesterone receptor negative (P-) to E - P+? Has it been her2neu negative all along? Is it the Ibrance that is so expensive? Has either onc discussed/considered droppiing the Ibrance and continueing with Faslodex? When I was diagnosed in 2004, the usual protcol for treating those of us with an E+ mbc was to use one of the non-steroidal aromatase inhibitors (femara/letrozole or arimidex/anastrozole) first and then if that worked for awhile before it stopped working, Faslodex would be used next. When I was first on Faslodex in about 2009, it was given in a one shot dose, but that was increased/doubled to two shots every four weeks. I got over 9 years from Faslodex and found it easy to be on. When Ibrance came out, I was on it for a few cycles but developed a serious lung complication, Intersticial Lung Disease, that has been stable since going off the Ibrance. Personally, I think that Ibrance is given way too much credit on many on-line patient groups like this one. But I am obviously biased! But I do think that Faslodex might be an option. My impression has been that generally those of us with E + mbc generally go through at least 3 different hormonal treatments before switching to chemo like Xeloda or one of the Taxanes. Those of us with bone mets are generally put on one of the bone drugs like Xgeva or Zometa. I don't have personal experience with liver mets but I do know that it is not unusual for a biopsy to be done when bc is first found in a new-to-us organ. And that is to see if the cancer cells have mutated and changed one of the three main factors, E, P or her2neu, as those are what treatment is generally focused on.

8576, the top tier of cancer centers in the US are those designated "Comprehensive Cancer Center." They are listed by state under "resources" on this groups home page on the right side of the page. The CCCs have bc specialist oncs who treat only bc and are involved in both research and seeing patients. If your second opinion onc was not at one of those, it would likely be worth while for you to go and get a third opion at one.

Good luck to you! I hope you do well with treatment and that you find peace of mind with whatever meds you are on. Our quality of life is really important.

[8576 in reply to PJBinMI]

Hi: Thanks for your informative answer. I too try to keep informed about this crazy disease. Although, I have not attended any conferences, I did consider doing so. In any case, to answer your question. My original diagnosis in 2013 was from a biopsy on the left breast which showed I was ER100%, PR100%, HER2neu negative with metastasises to my left hip. I was given 10 radiation treatments.

I have gone from Letrozole to Tamoxifen, then Anastrozole. Due to progression last September I was given 15 radiation treatments on the breast. I was put on Faslodex and Ibrance. Had to drop the Ibrance because of immune system. Also, after the radiation the tumour broke through the skin and would not heal so Jan 3rd, this yr. I had a complete breast removal plus lymph nodes under the arm. The surgeon was excellent and felt she got everything. Pathology showed grade ll, margins negative, ER- 2-5% strongly positive, PR 0-95% strongly positive, and HER2 negative. I was switched back to Anastrozole as my oncologist didn't know how to proceed. She ordered a bone scan and cat scan. The scans showed a tiny nodule at the breast clip and a small but enlarging soft tissue nodule adjacent to the right lobe of the liver and retroperitoneum. Liver is clear.

After the scan she still didn't know how to proceed and planned to do a board review and wants a biopsy of the nodule behind the liver. If it is progressive then I would be switched to Capecitabine.

In the mean time, I was nervous about the indecision and inaction so decided to get a second opinion from an Oncologist I had seen before in a near by city. She didn't believe my cancer had changed and that it only showed ER Negative because the meds repressed the Estrogen and therefore the low report. She would have me continue on Ibrance/Faslodex but I find it to expensive. Here in Canada it costs me $832.00 per month. My family wanted to pay that but I thought it too much and so she said advance to Xeloda.

I agree, I have the same feeling about Ibrance.

I did do well when on the Faslodex alone but the cost is prohibitive.

So there we have it . I am a bit worried about the biopsy. I don't think it will be easy to get. We shall see.

Hope I answered your questions.

Cheers, June S.

[Rustysrah in reply to 8576]

Hi PJB, sorry not got any input re the options. I’m on faslodex and ibrance too but don’t know yet if it’s working - first scan next month. Faslodex alone didn’t work for me at all, scan showed several areas of progression at first scan.

But I’m amazed at the difference in price of the drugs. The bill for my ibrance is £4200 a month in the U.K. (that’s about £7000 Canadian $). I only know this because I’ve seen the bill that my private medical insurance is paying. And that’s just the ibrance, the faslodex and other stuff is on top.

When you say it costs $832 Can is that after any insurance contribution?

Sorry to be off topic

Best wishes

Rusty

[8576 in reply to Rustysrah]

Don't worry about being off topic. Most topics here are good. I had progression as well while just on Faslodex. I guess I can't really tell, as that is from this scan 2 weeks ago and the one last August. So who knows when it increased.

Regarding costs. Yes, Ibrance here is $8000 per month. Faslodex is around $1200. per month. I was told I would get the Ibrance free as long as I am taking the Faslodex and I have received a discount from Phizer and the drugstore on that, so I pay $832.00 per month. No insurance and the Ontario drug plan does not cover that. I may pay it for awhile and hope it gets covered from Ontario.

Cheers, June S.

[Rustysrah in reply to 8576]

Thank you June, I did wonder why it was apparently so much cheaper over there! I feel so lucky to have insurance which pays for everything . It would be covered in the uk either way as it happens, but the nhs doesn’t always pay for everything, especially the newer, more expensive drugs.

Rusty

[conniejzirkle]

I am not a doctor, but just having a liver biopsy, here is what I was told. I have two mets in my liver - They needed to sample to make sure it was breast cancer and not primary liver cancer. Those would be treated entirely differently. However, if you liver is clear, perhaps what she means is she wants to biopsy the mass located behind the liver? I agree, it would be hard to reach, but I imagine it would be possible.

[8576 in reply to conniejzirkle]

Oh thanks so much. Good consideration. Yes liver is clear. This soft tissue nodule is behind the liver and deep in but seem to think they can get a sample as the biopsy is booked for next Wed. March 18th. Not sure I will go ahead with it though. The oncologist was supposed to get some other opinions first and then proceed. She booked it without telling me and I am not sure of her reasoning.

Cheers, June S.