Referrals and types of Drs.

Hybrids · April 2018

Hi all,

I received my diagnosis this evening. My Dr called to let me know the biopsy showed IDC. The mass is 3.7cm rated as a Bi-rads 5 by the radiologist and it's affecting at least two lymph nodes (mild thickening). Final pathology isn't in yet, so no more details than that and I haven't seen the pathology report that came in today yet. I have no idea if I'll have to have an MRI or further testing, but I assume I will. My Dr. has just went through breast cancer herself. She let me know I'll see a surgeon first to discuss options, then an oncologist and final pathology report will likely take a few weeks. She went through different options and explained that what route is best really depends on the situation that isn't known until the full pathology is in, as well as further tests if needed. She let me know who her surgeon was and will have him call me next week (Monday) but also told me if I change my mind and want to see someone else it's no problem.

I looked up her surgeon and he's listed as a general surgeon, not an oncologist surgeon. Is that normal? And is it normal to see a surgeon before an oncologist? Reading through here, it seems like most seen the surgeon first, but not all, but it's advisable to see an oncologist before any treatment is done.I trust my Dr, since she's obviously just went through it herself, but want to get a feel for the normal procedures so I can make a well informed decision about care and I'm wondering about the surgeon being a general surgeon. We have a cancer center not far from my area (The accreditation website is down for the weekend so I don't know if they are accredited), so that's an option too, but I assume if I go that route, I need to call them asap because they will likely have everyone all in-house (surgeon, oncologist, oncology radiologist, etc). I could see them as a second opinion. It's also a different provider/vendor than my current provider/vendor. Looking at my insurance, they cover Drs. at both places (but likely don't cover every Dr at both places). So, in terms of insurance, I could use either or, but in terms of medical records, it would complicate things since they are two different vendors. On another note, my breast biopsy spots didn't bleed much and aren't sore, but the lymph node biopsy spots have bleed quite a bit today (biopsies were yesterday) and are a little tender. I'm taking the bandages off tomorrow, so I'm hoping that will help some. It's not near as bad as being itchy while it was all still numb though! That was torture since no mater what I did, it didn't help with the itch since it was all numb. I think if that went on for too long, it could cause serious mental issues.

Georgia1 · April 2018

Good morning and I'm so sorry about your diagnosis. This early part is very hard but I think you'll feel better once you have a team and a plan.

Most of us saw a surgeon first and it is important to find someone with experience in breast cancer surgery. So my advice is to get an appointment at the breast cancer center even if it takes three or four weeks to get in. A second opinion is always helpful and as you'll discover there's a lot of testing and waiting around anyway so you have time to "shop around" and ask questions.

Then it's fine to have a medical oncologist and/or radiation oncologist at another facility. I did. Swapping records electronically is very easy for doctors today.

Best wishes.

Mucki1991 · April 2018

it doesn't have to be a oncologist surgeon but mine was.. I do suggest a meeting with a medical oncologist before surgery is decided. Best wishes for you

dtad · April 2018

Hybrids....so sorry you have to be here but welcome. To start I would insist on a MRI, especially if you have dense breasts. Also IMO you should at least get a second opinion at a university based teaching hospital. You want a breast surgeon, rather than a general surgeon. I promise you will feel better once you have all the facts and a treatment plan in place. Good luck and keep us posted.

Hybrids · April 2018

Thank you for the advice every one. Luckily, the cancer center that's here is from a teaching hospital: UC Health which is University of Colorado. The three that are close to me are not on their main campus, but the main campus isn't too far (about 1 1/2 hours away) and is close to good friends. They have a form on their website to fill out if you would like to speak with them to consult or set up an appointment, or get a second opinion, etc, so I filled it out. It sounds like it's a good idea to get second opinions anyway and to see the oncologist before the surgeon does anything, so I'll see the surgeon my Dr. referred me to and hopefully I'll be able to get into the cancer center and see a surgeon and an oncologist there also and then decide where to go from there.

Thank you everyone for help. It amazes me that so many people are willing to help others while they are going through their own nightmares.

NotVeryBrave · April 2018

I would definitely recommended seeing the MO before any surgery with the size of your tumor and concerns about lymph nodes. If there is any trouble with getting a timely appt - I'm sure that your doctor could assist with that.

Second opinions are great for confirmation of treatment plan or alternate options. And seeing a few providers helps clarify a good "fit" with one. Relationships are important on this trip.

Runrcrb · April 2018

Hybrids, I agree with what's been said above. Your pathology, particularly the ER/PR/HER2 information will inform some of the sequencing of treatment. There is a lot of waiting time during this early phase. While this is an urgent situation in your life, an early breast cancer situation is not often a medical emergency. You feel the crisis but most practioners don't. Take lots of deep breaths, continue to ask for what you want and, above all (in my opinion and experience) don't rush decisions. I was in crisis mode at my diagnosis and stressed by what appeared to slow moving test scheduling. From first biopsy to first surgery was two months. I'd say the first month was appointments - breast surgeon, MRI, two more biopsies, breast surgeon, two plastic surgeons and a ton of reading. First surgery (nipple delay and sentinel node biopsy) led to medical oncologist and radiation oncologist appointments prior to mastectomy three weeks later.

During this time, ask lots of questions. Bring someone to take notes if you can (spouse might be too close so think about bringing a friend who will write and (ideally) type up the notes and send them to you). It's OK to ask the question multiple times until you understand the answer. Internet research should be limited to quality resources.

Hybrids · April 2018

Thank you all. If I don't hear back from the cancer center by mid-day tomorrow, I'll call them to make sure I'm on their radar. My Dr's surgeon should be calling tomorrow also.

The waiting is shocking. I always thought of cancer as a hair on fire/everyone's on deck kind of situation. I never thought about the beginning stage being filled with waiting, but it makes sense since tests take time and you have a lot of waiting by the phone for results.

Tomorrow will be made a little easier since I have a lot of people to inform. I'll have to tell work so that I'm prepared in case I needed extended time off. I guess I should probably see about applying for FMLA. Since I don't plan to just take off for the whole time during treatment and my time off will be intermittent, I'm assuming FMLA is what they'll want me to do. I have more than 10 weeks of sick leave, but I think if an illness is serious and you know your time off will be more than a week due to the same illness (even if it's not consecutive time off), they prefer for you to submit it as FMLA (you still use up your sick time, then vacation time, etc, so you get paid until you run out of paid leave). I'll also talk about handing off some projects I'm lead on. This is not the best time to be leading any projects. Plus, I need to let other Drs know and a few more friends, so they don't hear it from someone else.

I have Grave's Disease and I'm unfortunately in the middle of a hyperthyroid/Grave's flare up, so I have an appt with my Ophthalmologist tomorrow (to verify my eyes haven't changed in terms of Thyroid Eye Disease). I'll be sure to let her know about my Dx and I'll need to contact my Endocrinologist Nurse. Since Endo's are in such short supply, I've been seeing an Endo Nurse for treatment of Graves, but with the Adrenal Mass they spotted (not sure if I mentioned that), and with the cancer, it's probably time I see an Endo and not a Nurse in case that changes the Graves treatment or medication/etc.

The Adrenal Mass was spotted incidentally on a CT Scan of my thorax. On my left side, above my collarbone, I have a swollen spot. There's no mass or anything obvious, but it's swollen/puffy. My Dr. ordered a CT scan of that spot (along with another CT Scan of my orbits for the Grave's Disease), which was done on the same day as my initial mammogram/ultrasound. So the thorax radiologist was unaware of the breast Dx. since this was all happening at the same time. On his report, he said he didn't find anything around the supraclavicular area but soft tissue (but since those are lymph nodes and there's clearly swelling/fluid buildup, that's concerning) but he did note a mass on my left adrenal gland that is consistent with a benign adrenal adenoma, so my Dr said I need to mention both of those things to the surgeon so that nothing is missed. After the cancer treatment plan is set, if it turns out they don't request a biopsy of the adrenal adenoma (I might insist on it, I don't really know enough about them), my Dr said I can be tested for cortisol to make sure I don't have Cushing's (a lot of people with Grave's Disease have Cushings also).

My head is still spinning. I'm 46 and until last year, I've been blessed healthwise, but now, it's like everything is falling apart Not much can be done about it so I'm keeping my spirits up. I hope everyone here is keeping their spirits up also.

Referrals and types of Drs.

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