Medical Oncologist for DCIS???

sunny1157

I was wondering how many of you ladies have a medical oncologist.  In August, I was diagnosed with DCIS (grade 3) and had a lumpectomy followed by SAVI radiation (5 days) in September.  My breast surgeon put me on tamoxifin in the beginning of October and I am to get another mammogram in March and go back to her then.  I am 54 and post-menopausal. Other than some pretty good night sweats and some hot flashes during the day, I don't really notice any side effects.  I asked both my breast surgeon and radiation oncologist if I should see a medical oncologist.  They both said it wasn't necessary for DCIS.  Do any of you ladies not see a medical oncologist?  From reading on this board it looks like a lot of women do.

cycle-path

My BS doesn't prescribe Tamoxifen or any other oncologicial medications, so for those I was sent to the MO.

redsox

The breast surgeon evaluated the initial causes for suspicion and did surgery.  Once she had good enough margins she referred me to a medical oncologist to discuss tamoxifen and a radiation oncologist to discuss rads.  At that point the involvement with the breast surgeon became, " Call me if you have a reason to consider surgery again."  Even for DCIS I would go to a med onc for tamoxifen.  They are the ones used to dealing with hormone therapy and evaluating any possible side-effects.  The med onc also orders blood work. 

peggy_j

I know someone with DCIS and she saw a MO while on tamoxifen.

dsj

I was diagnosed almost 2 years ago and did lumpectomy and radiation. I am now on tamoxifen, prescribed by medical oncologist. I see the MO every six months. He orders mammogram and DEXA, erc. It just makes sense that he would be the doctor for long term followup.

Beesie

There are questions as to whether someone with DCIS should see a medical oncologist, although from what I've read on this board, it seems that most women with DCIS do see one, at least initially to determine if any additional treatments are recommended.

However, since you are on Tamoxifen, there is no question that you should be seeing a medical oncologist. A surgeon's expertise is surgery; a radiation oncologist's expertise is radiation.  Neither of them are experts on systemic treatments, whether it be chemo or Herceptin or AIs or Tamoxifen. These are systemic treatments because they move into and affect your entire body, your whole system.  It's the job of the medical oncologist to assess your overall health and understand any risks that you may face from any systemic treatment, and to ensure that you are properly monitored for potential side effects.

CookieMonster

I'd say that if you're on Tamox. you should see a MO. Did the BS do any testing on you before starting Tamox.? I'm pre menopausal, and so things may be different for me, but we're doing a bone density scan and a I'm meeting with a GYN because of starting Tamox.

I saw the MO before the BS when I was first diagnosed too and the original diagnosis was DCIS, the IDC was only found after the lumpectomy.

OldOakTree

I was diagnosed 8 years ago and still see an oncologist every 6 months and that is also who gives me my prescription for the MRI and mammo.  Actually, my oncologist retired a couple of years ago so I now see the nurse practioner but it's all at the same office.

My gyno admits he isn't an expert in bc so I really can't depend on him.  He makes sure I get the MRI and mammo and had copies in his office and I do get a yearly pelvic us from him.  My bs moved 6-7 yrs ago so I can't see him.

I'm probably a  rare case seeing her twice a year but I'm also suffer from terrible hypochondria and feel better with all the back up and support I can get.

Mantra

I was referred to a MO after my mastectomy. Because my DCIS was ER/PR negative I was not given Tamoxifen so our relationship was very short lived . . . that was my one and only appointment.

CLC

I was referred to an MO after my initial dx of ADH.  Consulted with him then.  Then referred back to him after my dx of dcis.  Both times, we discussed tamoxifen.

I am really glad to have a working relationship with him.  His perspective is different than the bs and this adds to my understanding of my situation.  In addition, if I ever get a more advanced dx, I will already have that working relationship.

Finally, my neighbor is an onc nurse and is familiar with all of the local docs.  She was annoyed with me for moving forward with my surgery without first seeing the MO and wanted my reassurance that I intended to see the MO shortly afterwards.

It is my sense, that for most of the women, in our area at least, the MO plays the role of overseeing and coordinating care moreso than the bs...

Natters

I'm another one that sees a MO regularly. I had pure DCIS, taking Tamox, etc. I would see one at least once, if I were you. My MO is actually my favorite DR, after my PCP. They are, as Beesie said, Big Picture docs. The BS is a cutter, and you should really only be going back to the BS if there is another lump or a suspicious finding on one of your mammos or US.

oliviafinnegan

My breast surgeon is going to refer me to a medical oncologist as I have questions about my diagnosis and my overall body health. I am not going to take Tomox. Found out today that my surgeon does not normally order ER/PR tests for DCIS but they will for me now that I have requested it. Either the MO or my BC will order up an MRI for me, and I have a RO consult this Thursday as I have a lot of questions about rads. My BC explained that he's in charge of any surgery, the MO for any medical reasons, and the RO for anything to do with radiation. So it's a team, who all copy my GP on every test so she's kept in the loop. 

rn4babies

I had Grade 3 pure DCIS. My surgeon referred me to my MO to decide if rads was necessary and to prescribe Tamoxifen. The MO then referred me to the RO for the rads. I will continue to follow with the MO for at least 5 years while on Tamox.

b0bbi

I was diagnosed with DCIS Nov 7 and yesterday saw a MO at the request of my surgeon. I go in Thursday to have testing for BRCA because of my family history (strong). I guess I will have to decide either lumpectomy with rads or mastectomy (maybe double..not sure yet) and I am OVERWHELMED. My hubby is overwhelmed too....ugh. Hard decision. Will have to decide once I find out if I have the gene or not. :-(

juliet62

my bs referred me to the ro and mo, i had dcis and mine was tested for er/pr

tweetybird

I see my MO twice a year for bloodwork and tamoxifen, which I only have 3 more weeks left!!!! , but who's counting!!!!

I'm down to once a year with my BS, and she is the one that I get the referrals for my Mamo/ultra sound and MRI.

I stopped seeing my RO when I was 2 years out from Rads. Initially it was suppose to be once a year with him, but he left the practice/hospital that I was going to, and another doctor took over, and he said it was nice to meet you, you're doing good, and hope I don't have to see you again.

hobie644

I've been seeing my MO every 6 months since I was diagnosed 2 years ago, even though I'm not on any kind of AI's.  My BS, told me at my last visit that I don't need to see my MO anymore, that she'll be my main breast Doctor.  I think she's right, I really don't need to continue seeing my MO, it's just that I have this nagging feeling that I should continue seeing her.  I am surprised my MO didn't turn me loose after the 1st couple of visits since she's not treating me with anything. 

It's a tough decision deciding whether or not to continue seeing a Doctor, espiecially, if that Doctor keeps scheduling  you every 6 months...Do I keep seeing her for piece of mind, or do I stop. 

sunny1157

Thank you all for your input.  I made an appointment with an oncologist and go January 4.  It seems like a long time away, but it will be here before I know it.  The receptionist said I already have the ball rolling....meaning I'm done rads and on Tamoxifen. 

lisagwa

I am so glad you started this thread. I need more knowledge. my BS basically said to focus on recon. no need to do anything else. Well, because I had some unanswered questions and called BS a few times with these questions and to make an appointment, the BS told her nurse that I should make appointment with oncologist. I don't know whether I am having a mental block. I just dont seem to grasp all this info. My appointment with oncologist is next week. if anyone has a suggestion of helpful questions,I would love to hear them. Thx.

1openheart

Good morning Lisa....My diagnosis sounds much like yours and I have a MO who prescribes my tamoxifen.  If you search for questions to ask your oncologist in the search bar on the main page, you should find some lists with suggestions.  I asked about side effects, follow up imaging, chances of recurrence/new bc, etc...

It is always helpful to take someone with you who can take notes and help you formulate follow up questions.  I always had a voice activated recorder with me and so I have all of what my docs said on tape.  I always asked their permission before I used it, but all were fine with it.

Good luck as you move forward.

LAstar

My MO was useless.  She had no idea about DCIS and doesn't consider it to be cancer.  She would only be helpful to me if I needed to take any drugs, and I might consider finding another MO if I needed to take Tamoxifen.  

lisagwa

1openheart: thx for the info. I will research questions. My husband will go with me so he will be my 2nd pair of ears.



1openheart and lastar: you both have similar diagnosis too and yet treatments aren't same. Did you both have BMX?

cajmi

Hi Lisa,

I was diagnosed in November and had a bilateral MX with recon on Feb 1.  I was told the only follow up I needed was annual manual breast exam by my internist.  I was not comfortable with this, as I had no palpable lump with my DCIS.  In speaking with my internist, she agreed to send me to the MO, just to make sure that was the correct route.  I chose to have the MX so I could forego Rads and Tamox, but I have a sister with stage 3b breast cancer and I feel I need to be prudent in my follow-up.  I was 48 at the time of diagnosis, so a little younger than the average.  I understand that with the BMX there is only about 1-2% remaining breast tissue, but my DCIS was 100% estrogen positive and 70% progesterone positive.  So, I guess we will see what the MO has to say.  I'm glad you are going as well.  It is a good thing if for only to put our minds at ease.

Best of luck to you,

Carolyn 

lisagwa

Cajmi- Agreed. When is your appointment? Plz let me know what you are told and I will do the same. Thx.

LAstar

I just learned last week that my margins were involved in my re-excision so I will have bmx. Still trying to get my head around it. God luck to you!

1openheart

lisa..I had a UMX with direct to implant reconstruction and then a lift on the remaining breast 5 1/2  mos. later.  I initially was thinking I would have a lumpectomy followed by radiation, but as time went on and I learned more, I decided to go with a UMX.  I had a couple of areas of DCIS (that the imaging showed) that were biopsied and they went from near the nipple to near the chest wall.  So, there would have been a sizable chunk of my breast removed.  Also, for me, i was not crazy about having the radiation on my left side even though I was assured that now days, there is very little possibility of damaging the heart and lungs.  After the MX, the pathology report showed that my cancer was not only multi focal, but multi centric as well.  There was an area of DCIS in the upper inner quadrant that did not show up on the mammos. and a large area of ADH in the lower inner too.   I wish I could have kept my breast, I miss it.....or maybe more accurately....I miss the sensation,  but I am happy that I decided to keep the healthy one.  I just have to be comfortable with continued screening and tamoxifen to help protect it.

cajmi

Hi Lisa,

Just got my appointment for June 21st.  I will keep you abreast (pun intended) of the results.  Let me know how your appoint goes as well!!

Carolyn

Shayne

old thread - but wanted to add my MO wont see me until post surgery......and preferably post path report.    

Ive already got my rads kind of scheduled - they also want to wait for path report before saying for sure on any treatments.

 they call it LIMBO 

proudtospin

I was diagnosed in June 2008, 2 lumpies, told to do rads, RO pulled another mamo and found more DCIS so on to the third lumpie

fun but I only just stopped seeing my BS yearly, my MO sees me now every 6 months (was every 3 months for the first year), RO dropped off after ending the rads

the MO gives me the script for AL and until this year the BS gave the script for my mamo which for 3 years was every 6 months, now yearly, guess the MO will order the mamos from here on out

lisagwa

I saw the oncologist and she had basic response... since I had BMX, nothing more for me to do. She heard my concern and suggested I follow up with her in 6 months. She will give me breast exam. I really want to have Oncotype test. She said it wasn't needed. I am thinking that I will ask her again or ask my internist.



My husband has been through a lot with me this past year (my mom's death and my bc). he has been patient. however, his feeling is that a chance of recurrence is so low, 1-2%, and that DCIS isn't invasive. He is correct. So why do I still feel bad and worry? I know I think that if lets say 1 million women have similar diagnosis, doesn't this mean 1,000-2,000 could get recurrence (my math is probably off). Basically it just makes me feel vulnerable for myself and for others. Also it makes me consider hysterectomy.



Any thoughts, facts, experiences???

BLinthedesert

Lisa, the Oncotype test would not help you at all ... since it is used for people who have had a lumpectomy to determine whether or not they are candidates for skipping radiation.  Since they removed the tissue containing your DCIS (and all the surrounding tissue too) - there is no reason for you to have radiation.  Furthermore, since you are ER- there is no reason for you take tamoxifin.  You have reduced your risk as low as you possibly can, not only against recurrence, but also cancer in the other breast.  This doesn't mean you have no risk, it is just the lowest possible risk that any of us have. 

I can understand your fears, and personally, I would want to be followed-up too.  I think you should continue to see the MO and get 6 month breast exams for as long as she will see you ... it will give you peace-of-mind going forward.  That said, you do need to be able to live your life going forward and not let this fear get in the way of that.  You might want to ask your MO if there is a counselor at your clinic who might be able to give you some strategies about how to do this?  I have spoken to one at my clinic and she was very helpful.

Good luck to you.