Medical Oncologist for DCIS???

Options
2»

Comments

  • Shayne
    Shayne Member Posts: 1,500
    edited June 2012

    im going for internal rads - even tho i had clean margins and they got it all - there is NO WAY for them to know they got every microscopic cancer cell from the area.  

    · Share on FacebookShare on Twitter
  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    Shayne, if you had a mastectomy, and the DCIS was not on the chest wall, then they would not recommend radiation.  It is true that if you have a lumpectomy then they can't be sure, but if you have a mastectomy, then you are at the LOWEST risk available -- even lower than lumpectomy and radiation.

    Risk of recurrence for lumpectomy+radiation 4-5% - usual follow-up care is 6 month visit with RO/BS or MO and 6 month or 1 year mammogram and/or MRI (though I have heard of some women getting 6 month MRI alternating with 6 month mammogram).

    Risk of recurrence after mastectomy 1% - usual follow-up care 6 month or 1 year breast exam (or 1 year mammogram if unilateral mastectomy).

    · Share on FacebookShare on Twitter
  • lisagwa
    lisagwa Member Posts: 232
    edited June 2012

    BLinthedese- Thx for your response. I called oncologist today. I don't think I totally understood it before. Now I do. There isn't anything else left for me to do but to get 6 month or yearly breast checkups. As far as moving on, I am not sure what the answer is for me. I am still dealing with my mother's death and not sure which is the best approach to take. Is the support you are getting helpful? What state do you live in?

    · Share on FacebookShare on Twitter
  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    Hi Lisa, I am sorry about your Mom, my Mom died in August.  I live in Arizona.  There are a lot of options at the clinic that I am going to ... do you feel comfortable asking your oncologists office if they have any therapists/support groups that they work with?  

    I met with one of the nurses here and she walked me through some meditation exercises that I have found very useful. It could be that you just need a month or two of grief counseling - your local hospice center could probably put you in touch with some good contacts -- they probably could even find someone who could help you with both the grief and shock of your diagnosis/recovery as well.  It is really really hard to deal with so many things at one time - I think that sometimes we just need to talk to someone (who is not related/in our household) and work through these issues.

    Please let me know how you are doing ... and what you decide to do. 

    · Share on FacebookShare on Twitter
  • cajmi
    cajmi Member Posts: 80
    edited June 2012

    Hi Lisa,

    I understand what you are feeling.  I think that after having "cancer"  it is hard to do less screening after the fact than before.  This is the issue I struggle with.  It used to be we had mammograms, but post-mastectomy, there is nothing.  I don't know about you, but I didn't even have a lump, it was diagnosed with mammogram and biopsy.  So, my mind keeps saying if I should have something come up again, it will probably be malignant by the time it is big enough to be felt by manual exam.  I also have a sister who has stage 3b breast cancer.  I did have the braac1/2 which was negative, but there is obviously a family history.

    I've got a few more weeks until I see the MO and I'll keep you updated.  I just wanted you to know that I know how you feel, and we just want to make sure we are doing all we can and advocating for ourselves:>

    Carolyn

    · Share on FacebookShare on Twitter
  • anastasia31
    anastasia31 Member Posts: 45
    edited July 2012

    I just met with my surgeon for the first time on Thursday.  I asked him if he would be referring me to an oncologist and he said no, as he would be directing my treatment.  He said they usually do not refer to an oncologist for DCIS.  

    When I found my lump on the right side, they only did a mammogram on the right side.  Wouldn't do the left.  My surgeon questioned that and wants me to go back and get the left side done.  Also he indicated the MRI wasn't necessary.  Anyone else out there have something similar happen? 

    · Share on FacebookShare on Twitter
  • jenlee
    jenlee Member Posts: 504
    edited July 2012

    Sometimes a team approach or a "full service" cancer center might avoid all of this conflicting information that some of you have received. In general, I've found some surgeons to be egotistical (I can say that, I have some in my family). So I'm not surprised that some of the, feel that they can "manage" your case. But IMO, since MO's are board certified in internal medicine, they're going to be the ones who direct ongoing treatment, testing, medical care. I liked the fact that my BS and MO are associates and meet weekly at tumor board other MO's, RO's, pathologists, and radioligists. Everytime there was a turning point in my care, there was a lot of brain power discussing my case. After lumpectomy, I grilled my MO about whether he was sure that I didn't need radiation. He was able to tell me that when he (again) presented my case at tumor board, they all agreed that the answer was no unless I decided,on lumpectomy,only." I'm not sure if Tumor Board is unique to our area, but all of the oncology groups that I consulted with had tumor boards.

    · Share on FacebookShare on Twitter
  • Shayne
    Shayne Member Posts: 1,500
    edited July 2012
    You usually dont see an Oncologist until after surgery anyway, but I would get one.  And I would also insist on a breast MRI! - especially before you make decisions on what kind of surgery you are going to have.  
    · Share on FacebookShare on Twitter
  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited September 2012

    I was never referred to a MO. I just had my 6 month, post BMX, follow up with my breast surgeon and was told there was no need to see one because, even though I had ADH, ALH, DCIS and LCIS spread between both breasts - none of it was invasive. I also don't know if I'm PR + or -  I am pre menopausal and ER + 

    I feel like I should have someone that I can speak to that can help me with cancer concerns in general.

    I have no family history of cancer and yet, at the age of 53, I've had a melanoma on my back, breast cancer, and I also have thyroid nodules that are monitored annually.

    I'm at a loss. Can't figure out if I'm overly focused on cancer or not focused enough... 

    · Share on FacebookShare on Twitter
  • cat24
    cat24 Member Posts: 211
    edited September 2012

    My breast surgeon prescribed the tamoxifen for me and said I would see him every three months for the next five years.  Now that something has shown up in the other breast, which just happened to be as a result of a breast exam by a new gynecologist, I am seeing a surgical oncologist at a breast center.  I'm thinking of just switching to the specialist, not that I was  unhappy with the care from my breast surgeon - I was totally satisfied with my care and he was always truthful yet made me feel at ease - but because I feel like I may be going to have ongoing issues and may feel better going to a comprehensive breast center.  I did wonder if I would see an oncologist, but that was never brought up.  I'm thinking of questions for the new doctor - my appointment is Monday.

    · Share on FacebookShare on Twitter
  • howhm02l
    howhm02l Member Posts: 147
    edited September 2012

    My pathology was also reviewed by a tumor board. My final pathology showed pure DCIS, low to intermediate grade, with greatest measurement of 9.2 cm - a really big area identified on routine MRI after a clean mammo just 9 months before. My margins were 3 cm or greater.



    The tumor board did not recommend any further treatment so I will not have MO.



    I should mention that I do have a gynecological oncologist. I am BRCA2+ and will have a hysterectomy due to increased risk for ovarian cancer once DIEP process is complete.

    · Share on FacebookShare on Twitter
  • malleycat
    malleycat Member Posts: 49
    edited September 2012

    I see an oncologist too, every 6 months.  I was discharged from both of my surgeons (breast and plastic) pretty soon after each surgery and am requiring no further treatment.  I'm left in a similar situation as previous posters- the "now what?"  My oncologist does a "breast" exam, but that's it.  I asked him about MRIs for monitoring, and he said no.  But like others have mentioned, both of my breasts were FULL of DCIS (2/3 of the right, 1/2 of the left) and I never had a lump, so what good is him feeling around going to do?! I'm planning to ask my regular physician for the MRIs.  I just turned 33 a couple days ago, so I have way too long left to just sit around and wonder if something is growing in that little bit of tissue that's left.  Sometimes I wonder what the hell these doctors are thinking...  =/

    · Share on FacebookShare on Twitter
  • proudtospin
    proudtospin Member Posts: 5,972
    edited September 2012

    I was told in the beginning by my surgeon to get an onco, she gave me names and I saw one before my radiation but after the lumpies.  I chose a didf MO than the name she gave me

    surgeon and onco follow me every 6 months as of now, I am 4 years out.  Had a scare this past summer but biopsy said it was nothing

    I like have 2 docs following me, if I question the BS then I check it with the MO

    · Share on FacebookShare on Twitter

Categories