Why do I google??????

ccincin
ccincin Member Posts: 82
edited March 2014 in Breast Cancer #1
I don't know why I do it!! I hear so many phrases,words, etc on here that I don't know what they mean so I try to look them up and get sooooo scared! I don't think my oncologist is fully answering or explaining things to me. Basically I'm getting "chemo and rads are just clean up". I don't have tumor markers (not even sure what that is????). My pet scan came back all clear after the MRI. Other than diffuse cells on chest wall. I think that's to be expected since my entire breast was cancer filled with DCIS and IDC. But it just seems so nonchalant about it all and that it's just routine to do what we are doing. I have a second consult on Monday with UC Irvine. But it's two days before my next chemo.
Anyone else have cells show up on a pet scan? I know I'm probably overreacting but nerves are getting to me now!

Comments

  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #2
    I'm so sorry that it's
    I'm so sorry that it's scarey right now for you. I never had tumor markers done, imagine that! I'm going Thursday and I am going to ask him. What I gather is it's done through a blood test. Some say they are good, some say they can show a rise but not mean cancer.
    Never had a pet scan either.
    I hope you have good luck with the consult on Monday and I know just how you feel. It is upsetting when you can't seem to get a handle on all of this care and after care.
    Big Hugs coming your way.
    Wanda
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #3
    HI Ccincin
    I also had DCIS and IDC. Ya it was really scary, and when you don't understand what they are saying it is even worse. Don't google. That will scare you more. I would always come to the boards here when I did not understand something and I would always get my answer. It would be something I could understand. I don't think you are overreacting, you need to get your questions answered. You have to be able to trust your medical team and if you don't then go to someone else. The journey is a long one and you have to trust in order to get through it. Do what you have to do.
  • New Flower
    New Flower Member Posts: 4,294
    #4
    UCLA
    I have been a UCLA patient from very beginning. I had my markers done for the first time within two months after I finished Chemo. Do not worry about markers, however you can request them done before you start your Chemo, for example at consultation with UC Irvine or before your Chemo in oncologist office when they take your blood. Decision about Chemo drug usually is not based on biomatkers test. It is made based on the size and the type of the tumor, your age and family history.
    Yes, I did google stuff to learn, it is part of education, getting scary is a part of coping and making conscious decisions about your treatment. I am sorry and understand it is very painful. What was the side of your tumor? Since PET scan showed some activity , you probably better off with both Chemo and radiation.
    Good luck with consultation and Chemo.
    New Flower
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    Kat11 said:

    HI Ccincin
    I also had DCIS and IDC. Ya it was really scary, and when you don't understand what they are saying it is even worse. Don't google. That will scare you more. I would always come to the boards here when I did not understand something and I would always get my answer. It would be something I could understand. I don't think you are overreacting, you need to get your questions answered. You have to be able to trust your medical team and if you don't then go to someone else. The journey is a long one and you have to trust in order to get through it. Do what you have to do.

    bring 2 or 3 extra pair of ears with you
    I had friend (cancer survior then) and hubby come along to appts..they heard more then me, once I got to certain point in dizzy I lost all being said..it helped having them there...
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #6
    Try to remember some of the
    Try to remember some of the words and phrases here will not apply in your case, we're each different with different dx and different needs.

    For me, it's interesting to think of chemo as "clean up" since I'm doing chemo first. Chemo is a systemic treatment. So if there are little cancer cells trying to travel elsewhere in your body, the chemo will get them. Radiation focuses on killing any nearby cells missed during surgery. Does your treatment plan include all three approaches?

    As for your doc, if you feel he's being too nonchalant and not giving you the answers you need, call him on it. Explain to your doc how you want to be communicated with and how you feel. Let him know you want specific answers, not generalizations. I also think it's right to get a second consult. I changed surgeons after a second consult and feel much better about my upcoming surgery.

    I now google very rarely...it's very scary and so much doesn't even apply to me. So now I only look when I have a specific question.

    Good luck with the consult, and the upcoming chemo.

    Hugs,

    Linda
  • ccincin
    ccincin Member Posts: 82
    #7
    Gabe N Abby Mom said:

    Try to remember some of the
    Try to remember some of the words and phrases here will not apply in your case, we're each different with different dx and different needs.

    For me, it's interesting to think of chemo as "clean up" since I'm doing chemo first. Chemo is a systemic treatment. So if there are little cancer cells trying to travel elsewhere in your body, the chemo will get them. Radiation focuses on killing any nearby cells missed during surgery. Does your treatment plan include all three approaches?

    As for your doc, if you feel he's being too nonchalant and not giving you the answers you need, call him on it. Explain to your doc how you want to be communicated with and how you feel. Let him know you want specific answers, not generalizations. I also think it's right to get a second consult. I changed surgeons after a second consult and feel much better about my upcoming surgery.

    I now google very rarely...it's very scary and so much doesn't even apply to me. So now I only look when I have a specific question.

    Good luck with the consult, and the upcoming chemo.

    Hugs,

    Linda

    All three here
    I had a radical modified mastecomy on 09/29. Started chemo 11/18 and will finish the 8th round on 04/14 (my 10 year anniversary!). Then a total of 6 weeks radiation. Interesting that some do chemo prior to mastectomy. Anyone know why?
  • joannstar
    joannstar Member Posts: 403 Member
    #8
    ccincin said:

    All three here
    I had a radical modified mastecomy on 09/29. Started chemo 11/18 and will finish the 8th round on 04/14 (my 10 year anniversary!). Then a total of 6 weeks radiation. Interesting that some do chemo prior to mastectomy. Anyone know why?

    Some people do chemo first
    to shrink the tumor size.
    I had a partial mastectomy (and a 2nd to get clear margins) and then started chemo (6 session of T-C). I've done 4 and after the 6th I'll have 33 rad treatments. But because I am triple negative--I won't have to go on any hormone medication because it won't be beneficial.
    I try not to google too often...it freaks me out too much!
    Hugs,
    JoAnn
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #9
    Lighthouse_7 said:

    I'm so sorry that it's
    I'm so sorry that it's scarey right now for you. I never had tumor markers done, imagine that! I'm going Thursday and I am going to ask him. What I gather is it's done through a blood test. Some say they are good, some say they can show a rise but not mean cancer.
    Never had a pet scan either.
    I hope you have good luck with the consult on Monday and I know just how you feel. It is upsetting when you can't seem to get a handle on all of this care and after care.
    Big Hugs coming your way.
    Wanda

    My oncologist doesn't
    My oncologist doesn't believe in tumor markers. He says it can scare you for nothing, or, make you feel safe when you are not, and, he doesn't feel they are reliable.

    I had a PET scan and am glad that I did as it was clear!

    I hope you found some answers yesterday and are feeling better today.

    Hugs, Diane
  • ccincin
    ccincin Member Posts: 82
    #10
    joannstar said:

    Some people do chemo first
    to shrink the tumor size.
    I had a partial mastectomy (and a 2nd to get clear margins) and then started chemo (6 session of T-C). I've done 4 and after the 6th I'll have 33 rad treatments. But because I am triple negative--I won't have to go on any hormone medication because it won't be beneficial.
    I try not to google too often...it freaks me out too much!
    Hugs,
    JoAnn

    Joann
    How do you feel after your treatments. I've only had one and didn't do bad at all. Minus the 4th day out of body feeling!!
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #11
    Hope this helps
    Cancer markers are substances that tumors produce. They are found in the blood. Different tumor markers are found in different types of cancer. Tumor markers can be helpful in detection, diagnosis and management of some types of cancer. My markers were within normal limits from 1987 (when I was initially diagnosed) until 2009.

    In 2009, when we were trying to figure out if I really had bone metastasis, my markers were suddenly very high. They were helpful, in my case, because they helped push my docs into doing a bone biopsy which confirmed that I had the same breast cancer (now in my ribs) that I had had in 1987.

    However, markers are usually used less for diagnosis than they are to measure a response to treatment. In some cancer types, they are less helpful. But I think that is excellent if all your markers are within normal limits.

    I wondered if you meant receptors though and not markers? Let me know if you think they said that you did not have receptors and I will explain.

    The PET scan measures glucose uptake in cells. Cancer cells eat more glucose, to put it simply, so they have a faster glucose uptake. Anywhere in your body that has a faster than normal glucose update lights up. But remember, healing or inflamed tissue may also have faster glucose uptake, so a few cells may be normal.

    I think it is always a great idea to get a second opinion, so let us know how that goes. You are still in the "taking in phase" and that is hard. I had to quit reading for awhile after diagnosis because I was overwhelmed. Plus you have chemo brain to deal with.

    Make a list before you go to UC Irvine of all your questions: PET scan, markers, receptors, etc. Don't be afraid to ask. And we will help as much as we can.
  • Kylez
    Kylez Member Posts: 3,761 Member
    #12
    Kat11 said:

    HI Ccincin
    I also had DCIS and IDC. Ya it was really scary, and when you don't understand what they are saying it is even worse. Don't google. That will scare you more. I would always come to the boards here when I did not understand something and I would always get my answer. It would be something I could understand. I don't think you are overreacting, you need to get your questions answered. You have to be able to trust your medical team and if you don't then go to someone else. The journey is a long one and you have to trust in order to get through it. Do what you have to do.

    Googleing is ok, but, don't
    Googleing is ok, but, don't believe everything you read. You mainly need to talk to your oncologist and make him understand that you don't understand everything he is saying and that you want more from him. If he is any kind of doctor, he will respond favorably to you.

    And, if he doesn't, go for a 2nd opinion. Many here have and are happy that they did.

    I also want to mention that breastcancer.org is an excellent site with so much information. I have learned a lot on there, a lot.

    Good luck!
  • Angie2U
    Angie2U Member Posts: 2,991
    #13
    Kat11 said:

    HI Ccincin
    I also had DCIS and IDC. Ya it was really scary, and when you don't understand what they are saying it is even worse. Don't google. That will scare you more. I would always come to the boards here when I did not understand something and I would always get my answer. It would be something I could understand. I don't think you are overreacting, you need to get your questions answered. You have to be able to trust your medical team and if you don't then go to someone else. The journey is a long one and you have to trust in order to get through it. Do what you have to do.

    I read some on the internet.
    I read some on the internet. There are a lot of good sites out there. The Susan B. Komen site, the ACS site, breastcancer.org are great sites to read. But, just don't think that all is the truth on just any site.

    It is always smart to educate yourself however you can.

    Good luck!

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