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Topic: Follow up care: Breast surgeon vs oncologist?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: May 6, 2019 08:57AM

claireinaz wrote:

Dear all,

My oncologist retired end of last month. I live in a small city in No. Az, 3 hours from the nearest metro area (Phoenix). Our cancer center in my city is less than adequate; oncologists are not popular nor do they inspire much trust, so I had been traveling to Sedona where my MO was located for care from the beginning. I got chemo and rads there and 6 month check ups for years. Now the entire cancer center in Sedona closed, so I'm tasked with finding a new MO. I've made an appt at Ironwood CC in Phoenix in a few weeks with a new oncologist.

I saw my new local PCP (yep, you guessed it--my old PCP moved on, too) a few weeks ago. I asked her for Phoenix area recommendations for oncologists. She suggested I consider getting follow up care/check ups with a local breast surgeon--a woman, she's fairly new in my city. The reason my PCP suggested that was that I wouldn't have to drive so far, and since my MO was only ordering CBCs and looking for concerning indicators in those values, then doing a physical exam (breast, neck, abdomen) during my check ups, the breast surgeon could do the same thing here and then recommend an oncologist in the metro Phoenix area if something showed up that needed further care.

What do you think? I'm considered "high risk" because of my node status.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 6, 2019 09:09AM Ingerp wrote:

claire are you still on an AI? It seems like the one thing you'd need an MO for is that prescription/follow-up. Other than that maybe ask the BS if she's okay with all of the responsibility. And sorry for being ignorant but after BMX do you still get mammos/USs/MRIs/. . . ? I'd be most concerned about losing any ongoing screening beyond the physical exam. It might be true that the BS can order any of that you need. (Somehow all of that ended up with my RO rather than my MO.)

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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May 6, 2019 09:13AM Beesie wrote:

It would certainly be easier for you to see someone local, but the question is whether the breast surgeon is willing to take on this responsibility, and whether she has the expertise to take on this responsibility. My BS has been at it for decades and is the head of breast cancer surgery at the top cancer hospital in the country (Canada), yet he is always cautious to stick to surgical issues and stay away from all other topics. That said, I'm sure that in smaller centers, breast surgeons are more used to multi-tasking and taking on broader responsibilities.

Separate from the CBCs, are you currently on any meds such at the AI? If so, different side effects can show up over time; would the BS be familiar with all the potential side effects and be able to monitor you adequately?

My suggestion would be to set up an appointment with the breast surgeon, to talk to her and see how comfortable you feel with her. You might also consider asking her to recommend an MO in Phoenix, and set up an introductory appointment there. Then, if you are happy with both doctors and if they agreed, you could have your regular follow-ups locally with the breast surgeon, but the results of any testing could also be sent through to the MO, so that you have an active file there too and can quickly get in to see the MO should the need arise or should you have any concerns or questions that the BS can't address.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 6, 2019 09:54AM claireinaz wrote:

Hi,

-yes, I am on an AI and my previous MO said probably for the rest of my life if I can tolerate it (rx listed in my sig line at the bottom of my post). I've got one appt with an MO in Phoenix this month (see above original post).

I don't get mammos since I have a BMX. I had one post-BMX MRI 2 years ago that showed no detectable breast tissue and my MO has said (I agree) no mammos required. I wouldn't get them anyway, since 5 pre-dx ones showed no tumor though it was there, and so gave me this false sense of security. ILC hides from scans unlike IDC. The reason I had a BMX was because I didn't trust scans to protect me.

So you think it's a possibility I could get check ups through a breast surgeon instead of an oncologist? Surgeons can write AI rxs as well as an MO can, and I know what the side effects are; so far I've been tolerating Aromasin fairly well.

Keep talkin' sisters, I'm listening!


9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 6, 2019 09:56AM Beaverntx wrote:

Claire, do check with the BS, especially since she was recommended to you. Currently my follow up is with my BS who orders my Tamoxifen. She does the most thorough breast exams I have ever had which I appreciate. Should I ever need chemo I would see a MO. My blood work, DEXA scans and such are through my PCP. Mammograms are currently ordered by the BS with results sent to both physicians. I know they are in ready communication with each other. I got the biopsy results via portal on a Wednesday night, saw my PCP Thursday morning. While I was in his office he called the BS who saw me on Friday (and she does not usually have office hours on Friday). I had surgery the following Tuesday! Over the course of the last 16 months there have been several instances in which it was evident that she does not work in isolation. Not only that, I have a friend whose surgery was 20 years ago-- guess who her surgeon was, and is. All of that to say seeing a BS locally could work well for you. Best wishes as you get all of this worked out.

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 7, 2019 10:42AM jessie123 wrote:

Breast surgeons feel nothing but breasts all day. MO's see all cancers everyday - so not nearly so many breasts. I'd stick with the breast surgeon. In fact I'm going to ask my surgeon to keep me as a permanent patient. I'd bet any good internist can do the CBC's.

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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May 7, 2019 10:59AM kber wrote:

My MO and my BS both want regular check ups once I'm done with treatment, for what it's worth.  I think I'd be comfortable with either and so would they.  But I'm still in treatment so it's a bridge I'll cross later.  

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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May 7, 2019 02:37PM Beesie wrote:

jessie, that's not always true. Some surgeons who call themselves '"Breast Surgeons" actually have a number of different specialities including breasts. In fact all Breast Surgeons are general surgeons. There is no official speciality for breast surgeons which means that any surgeon who does breast surgery can choose to use this title, even if breast surgery is only a small portion of his or her practice. My surgeon uses the title "General Surgeon" but he only does breast cancer surgery. I've seen doctors who call themselves "Breast Surgeons" who do a lot more surgery in other areas.

On the other hand, at my hospital, all the Medical Oncologist are specialists. My MO focuses almost exclusively on breast cancer patients. I'm sure that's true at many large cancer hospitals, but obviously wouldn't be the case at smaller centers.

So what it comes down to is that the doctors with whom it's best for us to get our follow-ups may differ based on where we are treated and how focused each of our doctors are on breast cancer and their discipline. My surgeon is incredibly good at what he does, but he would ever agree to fill the role of an MO for long-term follow-ups. This could be different for a different breast surgeon

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 7, 2019 06:59PM - edited May 7, 2019 07:00PM by jessie123

Beesie --- you are right -- I wasn't thinking about that. In my case my surgeon only does breast and endocrine surgery. She has been in practice at this teaching hospital for years and years. The cancer center does have an MO that just does breast, but she is new and young so I have opted for a more experienced MO that does all kinds of cancer. Glad you caught that (-:

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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May 9, 2019 07:13PM beach2beach wrote:

I see my breast surgeon once a year and the onco 2x a year. My breast surgeon is only a breast surgeon and chief of breast surgery. If I were in a small area where I lost my onco and my surgeon would take me on, I have the confidence that she could do that just fine. If you find that you feel confident with the surgeon, like her background etc,, and she feels confident too, I would. At the very least I would continue to look for a new onco and if I find someone then maybe I would switch.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 10, 2019 12:40AM coraleliz wrote:

My MO retired as I was finishing my 5 years of Tamoxifen. I opted not to continue to 10years on Tamoxifen or an AI. My BS, who only does BC surgery, said she would follow me & refer me to another MO if needed. Then last year when I went, she told me she was willing to continue seeing me once a year but if I felt breast cancer was "behind" me, I didn't have to see her anymore. So, now I have no real follow-up, except for my PCP. I'm OK with it.

Dx 2/28/2011, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 3/15/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2- Surgery 4/15/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right
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May 10, 2019 07:41AM claireinaz wrote:

Thanks all for the valuable advice, I think I"m leaning toward an oncologist at this point because of the nature of ILC, which seems to recur later than earlier (10+ years), and my high risk (6+ nodes) status. I figure I shouldn't worry about convenience over care at this point since I'm only 7 years out and I'm worth the drive to Phoenix. I wish we had a wonderful oncologist in my city of 70,000 but we have only 2 at the one cancer center in town. Center and docs have a mediocre rating. A lot of people like me just drive 3 hours to Phoenix. Sighhhh.....

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 10, 2019 08:28AM Peregrinelady wrote:

Good choice, Claire. I remember when I was first diagnosed and deciding whether to drive an hour and half to see an oncologist at a bigger town and someone said to me, “It is just your life.” I drove there many times and always rewarded myself with a shopping trip at the thrift stores, a hobby of mine. Maybe you can find something in Phoenix that you like to do. I also am worried about late recurrence since my BCI was high. Have you had that test done?
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/17/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/30/2016 Arimidex (anastrozole)
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May 10, 2019 02:45PM claireinaz wrote:

Peregrine, what is a BCI? I am not familiar with the acronym.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 10, 2019 02:52PM claireinaz wrote:

Ah I see. Breast cancer index. Since I got my dx though the lumpectomy 7.5 years ago I doubt the tissue removed is still archived. It was a regional hospital and not a superb one so I’d be shocked if it was kept.

My previous MO told me I’d be on AIs for the rest of my life if I can tolerate them. I just had my FSh retested and it’s so far below even menopause levels I feel that the AI is still working. I don’t mind Aromasin right now so I suppose I’ll wait to hear from this new guy I am seeing soon.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 10, 2019 06:09PM claireinaz wrote:

I am definitely going to make an appt to see the breast surgeon--just to rule it out if nothing else--and I'm going to see an oncologist at Virginia Piper Cancer Center in Scottsdale, too. I don't have to have a follow up until Sept, so I have some time. Thanks beach2beach and if anyone has more insight, I'm open to whatever wisdom you want to share.

Claire

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 10, 2019 06:51PM nash wrote:

Claire, at this point, I don't think you can go wrong either way.

If it was me, I'd figure out what I wanted in my testing/care going forward, then meet with both onc and surgeon, and go with which ever dr agreed with me and could provide that care. What's important to you? Physical exams? Rx? Scans? You just need someone to provide these things to you. It doesn't matter what their specialty is so much, IMO.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
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May 10, 2019 08:25PM - edited May 10, 2019 08:29PM by farmerlucy

Just saw my PCP yesterday and he's going to take over my care next year (8 yrs out). My onc is a hour away and extremely busy. My implants are sub pec, so one would hope I could feel a local recurrence. Distant recurrence probably wouldn’t be picked up early anyway since my onc just orders a CMP/CBC. If something comes up I'm sure I could see her, though I'd prob go to an NIH hospital if it came to that.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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May 11, 2019 06:54AM Mavericksmom wrote:

Right now I have follow up visits scheduled with my MO, BS and PS this June and July. I plan to do all my follow ups with my MO because she is the only doctor who I feel comfortable with and of course she monitors my Letrozole.

I plan on canceling the appointment with my BS because I see no value coming from the appointment. I'm also in a predicament. I was out of work for four months. I can't be out more than a day or two again if I want to keep my job. I'm 65 and had cancer twice and replaced shoulders. I'm not someone who could easily get another job. I am not ready financially, to retire. I planned to work another two years, but have to work at least three to make up for my lost income form recent cancer treatment.

My breast surgeon refused to allow me to have a bilateral mastectomy, apparently the policy at the cancer hospital I went to is not to remove a healthy breast. They will for women with BRCA gene defects but no one else. My mother and two sisters and I had breast caner. You would think that would count for something but it did not. I'm BRCA neg.

Because of my life situation, even if I was diagnosed with a recurrence now I couldn't do anything about it so I will be holding off on mammograms and ultrasounds on my real breast until after I retire. For my sanity it is better not to know I have cancer rather than know and not be able to do anything about it.

I hope my doctor knew what he was doing when he denied me the surgery I wanted. I should have gone for a second opinion but I was in shock because the cancer came back after 15 years.

As for the plastic surgeon, I haven't seen him for months because my case was handed over to his PA. The PA does nothing but look at my wounds caused by previous radiation, and says the skin cells will fill in, it just takes time. I had to keep my appointments as long as I was out on disability but now I'm free to cancel. I won't cancel my next appointment with the PA until I'm sure I don't have a hernia. The PA said I don't have a hernia but I still think I might have one. I have a follow up appointment with my urologist for a non cancer reason before my PS appointment so I will ask him. I have no plans to do any further surgery. I had DIEP reconstruction and look hideous, thankfully clothe hide my body.

My first time with cancer I was told to pick either the MO or BS to follow up with. Both times I picked my MO, although not the same doctor





Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)
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May 11, 2019 08:07AM claireinaz wrote:

Mavericks, can you get a second opinion regarding a UMX on the other breast? ILC has a higher tendency to be multi focal, so wouldn’t you be able to find a surgeon that understands that? How after for you. You must be completely frustrated st this point.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 11, 2019 08:09AM claireinaz wrote:

I hope to hear from a few who have + nodes... and what they would do. We higher risk ladies are kind of a special breed.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 11, 2019 09:02AM - edited May 11, 2019 10:53AM by HersheyKiss

I see my MO every 6 months, my PCP annually. The surgeon's PA wants to see me annually now. None seem especially concerned about my node status (I am). I receive much more thorough physical exams from the PCP; she tells me she does this for all her BC ladies. Both the MO and PCP order identical bloodwork, but the MO orders the big-gun tests (CT scans, ultrasounds). I've been staggering my visits so that someone sees me every 4ish months, and I'm okay with that for now. I'm fortunate that no physician is more than 35 minutes from work or home, but if they were, I'd make the drive since I see them intermittently. Yes, I am (and we are) worth it.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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May 11, 2019 10:42AM Mavericksmom wrote:

claireinaz, it is too late for me to seek out another surgeon as I am back at work. The time to do that was when I had my first visit. I was in shock and I was pressured into having a mastectomy with DIEP reconstruction. When I say pressured, I mean pressured!  The BS told me they don't remove healthy breasts, told me I needed a mastectomy and that I should have reconstruction. He then called the plastic surgeon to come see me at that appointment even though he was at another hospital about 10 mins away! The PS came in, gave his pitch and I was outnumbered and felt like a small child with no voice!  

Does that happen to anyone else? In the real world I am a strong, out spoken woman. When I go to the cancer hospital, I feel like a small child, too shy to speak up!  I am getting better at speaking up but I should have done it sooner and the fact that I didn't is on me!

HersheyKiss, I agree we are worth it, but somethings in life are out of our control due to financial reasons.  Retiring is huge. I am not looking to retire and travel or spend tons of money, but I need to know I can pay my bills and not be a burden on my children. I don't think doctors get that about us.

I am probably wrong, but looking back, it was very smart of my BS to refuse to do a bilateral mastectomy.  In his mind he thought I would just have testing done and if I got it again, he makes more money doing a lumpectomy or mastectomy.  Science backs him up agreeing that not removing a healthy breast is correct, however, they need to treat each woman as an individual and listen to her needs.  He never once asked me why I wanted both breasts removed, he only told me he won't remove the healthy one! I hope by telling my story here maybe it will help at least one woman learn from my mistake and get the treatment she needs for her health.

I am well aware I can still get breast cancer where my fake breast is, but I also know that taking off my healthy breast would have reduced the chance of getting it in that breast by about 90%. Crossing my fingers if I get another recurrence anywhere in my body that it doesn't happen for at least the 5 years I am on Letrozole.

Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)
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May 12, 2019 08:10AM claireinaz wrote:

Funny how some MOs somewhat hyperventilate about high risk status e.g. + nodes, and some don't. Regardless, like you, Hershey, I am concerned, so I guess it doesn't matter what our MOs do--I'm going to try to mitigate that risk status by getting the best tx that's out there as long as I can.

Mavericks, I've gone through enough surgeries and weird health things that I now look at any doctor, nurse, specialist, etc. the way I would look at hiring someone to do work on my house. I'm the project manager, and they have the specialized knowledge to get the project done, but they aren't in charge. They work for me because I've hired them, and it's a business agreement. I may not know how to frame in a new addition on my "house", so to speak, but I know how big it should be and what it should look like. If they can't build it the way I want it, or can't tell me why it won't work the way I want it--they are fired. And I have fired a few docs in my time because they weren't working for me.

I just know that we have to be proactive about our health even if it means we aren't always smiley, complaisant "bosses" (patients). When it is something as serious as cancer recurrence, and I feel someone on my medical team lets their ego get in the way of my health, they are gone. No one will ever care more about our own health than we will.

Hugs,

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 12, 2019 09:47AM Murfy wrote:

Wow, Claire, couldn't have said it better myself! I, too, have fired a couple of docs. One misogynistic doc who said HE was boss and didn't take orders from me, and, more recently, my BS because he kept making comments like 'are you walking lop-sided yet?' because of my uniMX when he recommended a biMX. In the medical field myself and proactive in my own health, I don't take that kind of BS...

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/14/2017 Mastectomy: Left Chemotherapy 1/13/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/31/2018 Aromasin (exemestane)
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May 12, 2019 12:29PM nash wrote:

Clarie, what you said above was basically what my point was when I said don't worry so much about MO vs BS. Just pick a dr who will listen to you and partner with you.

I was diagnosed in 2007 at age 38. Neg nodes, but pleomophic ILC. My original MO did not do physical exams post chemo, so I fired her.

Second MO, whom I was with for 6 years, wanted to stop doing my post-lumpectomy breast MRIs. I could tell her decision was insurance driven, not clinically driven, so I insisted we continue the MRIs. We compromised on doing them every other year, so skipped a year, then the next MRI--bingo, local recurrence (while still on Tamoxifen). All she could say in the followup appt for that was, "Now, why had I ordered this MRI for you??" Plus laughed that my hot flashes would get worse when I switched to an AI.

I fired the second MO, went back to my original BS/PS, and started up with an MO in her group. The BS/PS did a mx/flap reconstruction that has left me in chronic pain. She also did a lift of the "good" side. Both she and MO #3 insisted we wait on doing a breast MRI on the "good" side, due to post-op inflammation.

Both the BS/PS and MO #3 were dismissive of my post-op issues, with the MO going as far as telling me "my mind wasn't accepting the surgery". That same appt, he was also dismissive of information I brought him from the first annual ILC Symposium. All he kept saying is, "Why are they holding this in Pittsburgh? It's such a dump:"

So MO #3 got fired, along with the BS/PS. New MO #4 immediately ordered a breast MRI on the "good" side. It was hard to read, so she and radiology insisted on a followup breast MRI six months later.

Boom, new 8 cm primary, positive nodes.

Towards the end of neoadjuvant chemo for the new 8 cm primary, I was feeling unsteady. MO #4 ordered a brain MRI. She said it is so much easier for her to order whatever test she wants b/c she is in private practice. The other places I've been at (one being a NCI cancer center and major teaching hospital) were way too beholden to their protocols.

So, off I go for the brain MRI, and tah dah--brain mets.

Had I stayed with one of the other three MOs, or the BS/PS, I'd be dead already, probably several times over. I have a new BS, although I'm not having an mx on the new primary side now due to the brain mets, but if I ever need him, he is wonderful. He is very on top of ILC imaging issues.

I tell my long winded saga to reinforce my point that you just have to go with a dr who listens to you and partners with you, whether they be a BS or an MO. Too many of us have the unfortunate experience of dismissive drs with inflated egos, or ones who simply don't put any thought into us as individuals. Sometimes that later point is because they can't put thought into us--their employer dictates a paint-by-numbers approach in the interest of cost savings.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
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May 13, 2019 08:26AM claireinaz wrote:

Nash, sheesh--can't believe the insensitivity and foot-in-mouth disease from so many of your team. For pete's sake, that sounds like a string of egotistical jerks.

My previous MO was so caring and listened to me--when I'd find research about some new treatment or development for ILC she'd be interested and then we'd talk about how it would, or wouldn't, work for me. She checked my Vit D levels every six months so she wasn't against integrative medicine, and she (importantly as you pointed out) gave me comfort that she had my back. We got very close over the years and I feel kind of set adrift at present. I might not find someone similar to her, but I'm going to try and look to get as close as possible to a similar caregiver.

I'm well-informed about our disease, so I'm not so concerned about not seeing an MO at this point, because frankly I feel I could read my CBC report nearly as well as my MO did at this point--I know what she looked for-- and if anything felt weird I'd get it checked out right away--but if I do need tx I don't want to have to search for a new MO, so I think I'll probably suck it up and try to find one in the Phoenix area since they are the closest metro area with options and specialists.

For the sake of ruling out a BS, I'll interview the one in my city and see what she has to say.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 13, 2019 12:33PM Runrcrb wrote:

Claireinaz,

Hopefully where you live in AZ is beautiful. Back to your original question. I live in a city large enough to support many options for quality cancer care so, while I may lose doctors to retirement, I’m confident I can find a quality replacement.

I’m an anomaly in that I haven’t seen my breast surgeon since he removed my portacath in February 2017. He is great and I recommend him and would return if I needed surgery for breast cancer. Same with my radiation oncologist. I see my MO twice a year and I talk to my PCP about everything. She is who I saw when I found the lump and who called to tell me the biopsy results. My recurrence risk is low and I plan to continue my AI as long as my MO recommends.

Have you found a new PCP? (Think you mentioned you had to get a new one). You could find a good MO and make the drive annually and leverage your PCP. An idea

Hope you can get it sorted out to meet your needs



Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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May 13, 2019 01:21PM Beesie wrote:

Runrcrb, your situation might be an anomaly for the U.S. but it's not for Canada, or at least not where I live. Your follow-up is exactly like mine.

In my experience, the Breast Surgeon follows up a couple of times after all surgery is complete, to ensure proper healing and no post-surgical issues, but that's it. I never had rads (I had a MX and rads wasn't required) but my understanding is that it's the same with the Radiation Oncologist. I know from my own experience that it is the same with the Plastic Surgeon - patients don't continue to see a PS once the reconstruction is complete. Ongoing follow-up is the responsibility of the MO and the PCP.

That said, should any issues ever arise that require the opinion and expertise of one of the other specialists, from my experience they are immediately available. When that's happened to me, even though it had been years since I'd seen my doctor, I had an appointment within days and I was treated as a current patient.

I admit that I wonder if the frequency of follow-up with so many different specialists, particularly for those who are early stage and who have no on-going issues, is tied more to money than to need. In Canada, with the structure of our healthcare system, the financial aspect doesn't come into play in the same way. I have never questioned whether a treatment or drug or appointment is being recommended to me because the doctor will benefit financially.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 13, 2019 01:31PM claireinaz wrote:

Hi Run, yes, I did find a great PCP (she actually was my PCP years ago and she went into hospital adminstration and just recently went back into practice, which was happy for me). She was the one who suggested the breast surgeon here in town.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus

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