Do I really need an oncologist?

annie7216 · September 2009

Hi everyone

I had a bilateral matectomy 3 weeks ago for extensive dcis in my right breast. My sentinel nodes were all clean (7), I am ER negative, and there were no worrisome issues in my pathology report.I am extremely thankful. I am undergoing reconstruction with tissue expansion and am trying, very hard, to move on with my life. When I went for my 2 week follow up with my breast surgeon, she referred me to an oncologist. When I asked her why, she said for him/her to also check me once a year and to keep me in the database should new treatments emerge that I could benefit from. Since I am not a candidate for tamoxofin, do not need chemo or rads, do I really need to make this oncology appointment? Is it really necessary? After weeks of unending anxiety, the thought of yet another anxiety producing appoinment puts me a little over the edge. I am tempted to pass on it entirely. Please advise. I appreciate all of your thoughtful comments.

HelenaJ · September 2009

Annie - I wouldn't imagine your Oncologist has much to add to what you already know unless there is some family history, you are "young" and considered at high risk, then perhaps genetic testing could be discussed. Your breast surgeon is just trying to cover all the bases for you. My friend here in Australia is undergoing expansion at the moment for her bilateral mastectomy due to DCIS. She was never referred to an oncologist and has no further treatment other than the completion of her reconstruction.

I don't think there will be any nasty surprises at the appointment so if you decide to go don't get too anxious.

soft hugs

Helena

dlb823 · September 2009

Annie ~ I think you should have the oncology appointment, just so that nothing about your situation is missed from an oncologist's point of view, which will be slightly different than your breast surgeon's. One thing he/she might do, for example, is future blood work, such as the CA2729, to watch for any hint of a future problem.

You're right; you probably don't need an oncologist for much, and maybe not at all. But I don't think I would totally pass on at least meeting with one to find out what they have to say and if there is any monitoring they feel you need beyond what your BS will do. Deanna

sunnyhou · October 2009

Hi there

I too had DCIS, grade 3, with comedo necrosis.. Age 38.. mom had BC, aunt and paternal grandma.. but they all had it after menapause.. I was shocked to say the least.. Anyways,, I had a double mastectomy 4 weeks ago.. Doing expansion as we speak.. I was told no more treatment and get on with your life and your new boobs.. BUT.. I feel ill at ease.. I want to be followed by someone so .. on my own I made an appt with an onco.. I think he can wrap up all the details.. Trust me.. I was anxiety ridden when I got the diagnosis, lost twenty pounds, had to go to a psychiatrist because I could not sleep, eat.. I felt scared and alone.. but I think it would be a good idea to go.. I think you can wait, no rush and then make an appt.. My mom has been cancer free for 12 years and still goes to the onco every six months.. he orders her tests and I like that an expert is taking care of her and watching for anything and everything.. good luck to you.. take a deep breath and a break from this and then decide..

mawhinney · October 2009

When you have or have had cancer you generally have a team of doctors each handling different aspects of your care. I recommend that you see the oncologist and ask what exactly his/her role will be in your care. I see my surgical oncologist 2 x a year unless I am having concerns or problems. Then I go in for an extra appt. She deos a breast exam & has me alternate every 6 months between a mammogram & mri. That way I am having routine testing to see if there are any new developments. I also see a medical oncologist who takes care of my meds, orders bone scans, & blood work. He also examines my breasts. I have finished reconstruction but will see my PS once a year. I also see my gyn once a year. I am very happy to have so many doctors watching out for my well-being.

Please meet with the oncologist to discuss his roll in your treatment.

Bren-2007 · October 2009

Annie,

I don't have a medical oncologist. I live in a small town and was treated at a local regional hospital. My team consisted of my surgeon and then the radiation oncologist. I was new to the area and didn't have a PCP when my cancer was found. I had a lumpectomy, and when my rads tx ended, I never went back to see the radiation oncologist. My team now is my PCP and surgeon and I see each of them every six months. My PCP is actually the coordinator of my care now. I had a small Stage I cancer. I did not receive chemo, if I had, I would have been seen by a medical oncologist.

I think a lot would have to do with your age, where you live (and the standard protocol for your area/hospital), etc.

I prefer having my PCP, who is on top of every facet of my health, monitor me on a regular basis. I can certainly understand your anxiety. If I had to see the medical oncologist regularly, I'd probably have to be sedated.

Best wishes to you,

Bren

Beesie · October 2009

Annie, my situation wasn't quite the same as yours since I had a single mastectomy only, I had a small microinvasion of IDC along with all my high grade DCIS, and I'm ER+. So I was glad to have the chance to talk to an oncologist. I saw him twice. During the first appointment we discussed Tamoxifen (he recommended against it) and genetic counselling. At the second appointment, I told him that after doing my own research, I agreed with his recommendation about Tamoxifen and we reviewed my BRCA results (which were negative). Since I wasn't taking any further treatments, at that point we agreed that there was no reason to meet every six months or even annually, but I was now his patient so if I ever had any concerns, I could simply call to set up an appointment. That seemed reasonable - and reassuring - to me.

So, based on my experience, I would recommend that you see the oncologist. My guess is that he or she will simply confirm what you know, which is that all your treatment is done and that your risk of recurrence or a new breast cancer is very low. After that, there probably isn't any need to have follow-up appointments but at least you will be in the oncologist's files and you will have easier, quicker access to one more doctor should you ever have any concerns or problems.

roseg · October 2009

I'd go see the Oncologist at least once. You really ought to have seen him/her before surgery. I think your surgeon is doing a shut the barn door after the cow got out kind of move.

NCCN standards call for you to be monitored twice a year for 5 years. Even with a bilateral someone will need to pat around the area, looking for bumps, lumps, thing that should be noticed.

Surgeons can do that but not all do. It's not as lucarative as seeing patients you might do surgery on. If you see the Oncologist you can work out your 5 year monitoring plan.

FlowerArtist · October 2009

Hi everybody:

Following these threads is beginning to lead me to the conclusion that I may not have been given the fullest understanding and follow-up for my DCIS. We found a tiny, tiny lump about a year ago, did a surgical biop. followed by a second surgery to get fully clean margins. The tumor itself was less than .5 cm. I did have radiation (33 treatments) and did see a medical oncologist. We talked Tamox. He basically offered it, but told me all of the side effects and was gently negitive about it -- his primary concern was the potential for blood thinning (my primary concern was not to increase my already extreme hot flashes). Bottom line, we both agreed that I wasn't going to take it. (Yes, the tumor was Estrogen receptive.) He also gave me 'permission' to never see him again, but if I wanted to, just to call and I'd be accepted quickly since I was a returning patient. So far, I haven't felt the need to return.

Last week, I had my first mammo since BC. All is clear. My surgeon says they will call me for an appointment in 6 months, but I can cancel that one as long as I go to the one a year out (after my 2nd mammo). I see the radiologist in 3 months...and my gyn about the same time. I don't have a PCP. I did not require chemo nor was I offered MRIs. (My surgeon said that it wouldn't show anything that they couldn't see in the mammo.)

My answer to your question is that it's really good to see the oncologist at least once and then decide if you want to continue with him/her.

Now I've got a question: Is my surgeon being too easygoing?

Hindsfeet · October 2009

My surgeon said that since I chose not to get further treatment that I didn't need a oncologist. It is almost a year since I was dx with my second dcis, and time for a mammogram and or mri. My surgeon is pretty much sticking with me. She said she will be seeing me at least twice a year. She is the one who orders the mammograms, wants me to get a genetic tests, and is giving me counsel to what I should do next. I am comfortable with her as my primary cancer doctor. It might be different if I had chose a mx.

CAROLMARIE427 · October 2009

I had a double mastectomy, one side with DCIS and the other side preventative. I don't see an oncologist. My doctor referred me to one when I first had a unilateral and was thinking the tamoxifen route. I also went for genetic counseling before taking the BRCA gene test. However, after I had my other breast removed, my breast surgeon discussed about the little benefit of tamoxifen after a bilateral for DCIS, and I never saw an oncologist. I still see my breast surgeon every three months for followup ( I am only a year out... and three months from my prophylactic). I do think that there needs to be someone to follow up whether it be a breast surgeon or an oncologist for the first few years after surgery.

MarieKelly · October 2009

I had a lumpectomy for a 1 cm grade 1 IDC with DCIS over 5 years ago. I refused all treatment except the lumpectomy and haven't seen an oncologist since just after the surgery. The last time I saw one he told me that since I was not undergoing any kind of treatment (chemo, radiation, hormonal therapy), then there was no reason to continue seeing him and to just come back in the future if I happened to need his services for anything. The only follow up I have is my yearly physical exam with my PCP and yearly mammograms.

changing_woman · October 2009

Hi Annie

So new on here that my mastectomy for DCIS is still almost 3 weeks away.

What I have learned is how I need to educate myself because I am my own doctor. From what I read here, I decided to get an MRI on both breasts to see if anything is going on in the left breast before surgery. I was told that was a good idea and they scheduled it. So, I had to have the idea--they did not have it. A little frustrating, however, it all means that I am in control of what happens to me which is empowering if a bit overwhelming.

After the mastectomy and path report, I am going to request an oncologist consult even tho I have been told that DCIS does not need it. I have seen too many women with DCIS who do have chemo to distrust that blanket statement.

The thing is--you will not be going to the oncologist for them to work on you. You are seeing them for information so you can make better decisions for yourself. You are in power--not them.

You have come so far. I salute you, Annie!

Beesie · October 2009

changing_woman, you mentioned that "I have seen too many women with DCIS who do have chemo to distrust that blanket statement ". In fact that blanket statement is true. Chemo is a systemic treatment - it's goal is to track down, find and kill off any random cancer cells that might have escaped from the breast. DCIS by definition is completely contained within the breast - all the cancer cells are contained within the milk ducts. So there is no reason to prescribe a systemic treatment for a local disease. That's why chemo isn't necessary for DCIS.

I have no doubt though that on this board you've seen lots of women with DCIS who've had chemo. These are most likely women who have DCIS and invasive cancer. DCIS and invasive cancer are often found together, and when that happens, the staging and treatment is based on the invasive cancer. So if chemo is given, it's because of the risks associated with the invasive cancer; it's not given for the DCIS. You've probably also seen on this board women who have chemo who indicate that their diagnosis is "DCIS, Stage I" or "DCIS, Stage II". The fact is that DCIS is always Stage 0 so anyone who is stage I or higher has some invasive cancer along with the DCIS. What happens however is that the word "DCIS" tends to stand out in a pathology report, whereas the words "invasive ductal carcinoma" or "infiltrating ductal carcinoma" tend to get lost. So misstating a diagnosis to be DCIS, when in fact it is invasive cancer, happens all the time.

Having said all that, just as I went to see my oncologist a couple of times, I think it's great idea that you requested the consult with an oncologist. When you talk about chemo, it would be very interesting to know if he or she says anything different about DCIS and chemo. Although I had a microinvasion of invasive cancer along with my DCIS (and I'm therefore Stage I), my oncologist confirmed to me that chemo is not prescribed pure DCIS or for DCIS with an invasive cancer as small as a microinvasion.

annie7216 · October 2009

Thank you everyone for such thoughtful comments! These message boards have been so wonderful both for factual information but also for support and reassurance. I can't thank you all enough for taking the time to reply. I plan to heed all of your collective advice, but I will first take a break from this and then seek the care of an oncologist. Even my plastic surgeon reassured me that the oncologist would only have good things to say that would make me feel better. Hopefully my brain will begin behaving more rationally in the near future.

melissa-5-19 · October 2009

My thought is even through it is HARD to walk into a building the says something like "Oncology and blood specialist" Plastered across the front of it - and I know because 2 years ago BEFORE DCIS was even in my picture, I had to go see an onc.

It has served me well to be established and have a relationship with my oncologist. He monitors my blood , has a very critical eye on results and was there for me the minute I was dx'ed even before my GYN who got the mammo results! Having another smart brain in your corner is like cheap insurance.

Do what is right for you and I will support your feelings.

annie7216 · November 2009

Well I went to see an oncologist, as per all of your suggestions. The first thing he said was "umm...why did your doctor send you here?" But in the end I was glad that I went because for the most part, he made me feel like I had done everything I could to keep myself healthy. Thanks to you all.

Do I really need an oncologist?

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