Second opinion

[kduck]

I have returned from MD Anderson! The doctor say she wouldn’t give me IV Chemo until I tried all oral Chemo first, she would do exemtense first then taxol, but taxotere last. She also stated my liver is functioning just fine and there are more options if taxotere doesn’t work. I do have a lot of mixed feelings because she states if I’m er+ she wouldn’t do taxotere but if er- she would! What’s the difference if it’s treating your entire body? I have more questions now then before. She also say get biopsy of the liver so we know for sure it’s breast cancer, which I think it is! If I do taxotere she would agree to do hormonal treatment tamoxifen. So I’m just so confused!!!

[jersey-jazz]

kduck. Your questions are so valid. I sympathize with you. I feel that every time the doctor speaks to me, many more questions are created. Perhaps they don't have time for most of the MBC patients who know their life is on the line and so have spent a considerable amount time on the subject and, consequently, are very well informed. We MBC patients need to be given more information than most early stage patients because of our extreme involvement in our health. I was also subjected to a biopsy of my liver to determine that the lesion was breast cancer.. Why are they not using the science of the circulating tumor cells or some other less invasive procedure but what do I know! I'm not a doctor. I will be Tele-visiting with the oncologist on Thursday and will be asking that question, again.

[kduck in reply to jersey-jazz]

Thank you

[queeneee in reply to jersey-jazz]

Hello jersey-jazz, can you say more about your liver biopsy..? was it under local or general anaesthetic? Were the results as expected? You sound negative about the experience.

[jersey-jazz in reply to queeneee]

Whatever anesthesia I was given, I was out for the count. I objected to having it done but I was given no choice and, as everything, I had she pain but It wasn't as bad as expected. Four days later I left for a long trip.

[queeneee in reply to jersey-jazz]

Did they find what they were looking for? I have been told that my liver mets are cancer but could be something else.. it would make a difference to the meds I am taking.

[jersey-jazz in reply to queeneee]

Yes, they found what they were looking for; a cancerous tumor in the liver. The liver lesion had been on the first scan done in 2015 but determined to be non-cancerous. How? I do not know. The scan in 2017 showed that it remained the same. In May 2020, it was lighting up with the PET scan but showed no increase in size. Then, in December 2020. it had grown dramatically. They now say that I was de novo. all along. I say, "maybe" . I also say that I would like the circulating tumor cells test to determine, like you, what meds, if any, I should be taking. So far, no joy. I will be like the leaky faucet again tomorrow when I have two tele-visits. I hope that this helps.

[queeneee in reply to jersey-jazz]

thank you for your reply - I have taken up 20 mins daily meditation, which has made me less stressed.. With the day you have planned tomorrow..it might be worth considering!

[kduck]

Thank you so much the long post actually helped. I came to the decision to sit down with my doc and discuss what md Anderson doc said. I’m coming to terms with following my docs treatment. Thank you

[Staysha]

Sandra,

Your posts always seem to give me some sense of peace with what’s going on with my treatments. Even though it’s not to me it really feels like it is. Thanks for your continued encouragement, knowledge, and gentle words.

Stacy

Kimmie,

Thanks for sharing your experiences. Wishing you all the best with your treatment. I was diagnosed with Mbc to start with. My first line of treatment included taxotere. I’m not going to lie. It was rough but it only lasted for a specified period. I then continued on herceptin and perjeta. These are IV but they are not chemo and I have basically no side effects. I wouldn’t think taxotere means that you’ll be on the hard stuff from now on. I think maybe for me it was used to get things under control and then put on a less harsh treatment to keep things stable and even shrinking.

Hope my experience helps you.

Stacy

[kduck in reply to Staysha]

Thank you

[MyMiracle13]

Kimmie I hope that whatever treatment you and your oncologist choose will work well for you. I am on Xeloda now because my oncologist said a number of his patients experienced less side effects with Xeloda than Affinitor/Exemestane. I wish you well.

[kduck in reply to MyMiracle13]

Thank you

[Hidden]

Hi Kimmie it’s all a bit of a minefield isn’t it? Thank goodness for Sandra’s calm knowledge! I am sure once you have that discussion and start the treatment you will feel comfortable with the decision that has been madeClare

[PJBinMI]

MD Anderson is a very highly regarded cancer center for those of us with MBC! But no onc can predict with 100% accuracy what will work best for us. Pathology reports and b lood work go a long way in providing information about the particulars of the cancer cells in our bodies, and treatment is recommended based on that info. There are quite a few meds that treat hormone receptor positive cancer and others that treat her2neu positive cancer. I've been in treatment for MBC for 17 years, and in that time, quite a few new drugs have been developed, especially drugs that target specific mutations in the cancer cells. Testing of our specific cancer cells has become much more specific and sophisticated during that time. Metastases are often/usually biopsied and tested to determine whether their make up is the same as the original bc. That's probably why a liver biopsy is being recommended for you. I think the idea of getting a copy of the MD Anderson's notes and going over them with you local onc is a great idea. It might be helpful to call that office, speak with a nurse who works with your onc, and ask if you can have some extra time with your onc to do that. One thing that has been helpful for me is to have test results and onc's notes before my next appt so I have time to think about what's going on and formulate questions. Some onc nurses can be really helpful, too! When I was in the first several months of this lousy cancer journey, I heard of a few women who had lived for 20 years with mbc and when I first attended a big mbc conference, there was a woman there who had been dealing with mbc for 30 years! I also met several local women who had gotten longer from Faslodex than they had from their first treatment with one of the non-steroidal aromatase inhibitors, meds that are often used first for those of us with E + mbc who are post-menapausal. I got almost five years from Femara (letrozole) and then over 9 years from Faslodex. Now I have been on Exemestane for over 3 years but am likely going to be changing meds soon. I hope you will have a good visit with your onc and get alot of your questions answered. This living with mbc is really a step by step process with the future unknown. If you can find ways to make peace with that, you will feel alot better as you move forward, and we are here to support you and give you the wisdom of our experience! Sending cyberhugs, Pam

[kduck in reply to PJBinMI]

Thank you

[Dragonfly2 in reply to PJBinMI]

Thank you so much for your input about living with mbc for the long haul...when I first got diagnosed, I was sure I’d be dead within a year...I feel better now and actually forget I am sick when I’m busy and involved with a project. I will remember your words when I’m feeling low. But I don’t think I have thirty years ahead of me...haha....though in the end my obituary may say that I fought the cancer for that long...thank you!

[8576]

Getting a second opinion is one the best things to do although it can be confusing. I find I really need someone with me at these meetings to help make notes. Great that you have so many options.

Cheers, June S.

[kduck in reply to 8576]

Thank you