a couple questions about tests and waiting periods

spainer

Hi,

I found a lump at the end of May, followed it (as we are taught) and finally went in to have a mamogram in August, as it hadn't changed over a couple months of my cycle. Mamogram led to ultrasound and core biopsy and I received the results of my biopsy two weeks ago which was: 

1. Ductal carcinoma in situ, intermediate grade, papillary,
micropapillary, cribriform, and comedo patterns. 2. Usual ductal hyperplasia.
 3. Microcalcifications in association with benign ducts and ductal
carcinoma in situ. 

It has been really great to read these boards and educate myself, which has helped me feel ok with what's going on. I do have a few questions, so hope some of the wise women out here could offer some advice.

I have to wait 5 weeks for an appt with the surgeon, so am trying to get some stuff done in advance, so that  I don't have to wait longer for additional tests after that. I'm 45 and my mother had breast cancer (at 63), so I met with a genetic counselor yesterday and was tested for BRCA1 and 2. It will be 2-3 weeks for those results. 

One of my concerns is that I have been having tightness in the area below my collarbone on my left side (side of breast with cancer) for about 6-8 weeks. I had written it off as a tight or pulled muscle, but now thinking about it, it seems dumb not to follow up on it as it is a constant and persistant dull ache and the area is a little swollen. I also have some other small pea size (or bb sized) lumps in the diagnosed breast. One has been there for a while, maybe 6 weeks or so (I thought it might have been a cyst) but the other two are new. I asked my GP about the result of the mamagram and she said nothing else was seen, but I also have very dense breasts. I had a mamagram last November (six months before I found the lump myself) and they didn't see anything then. So, I'm not totally sure they catch everything.

I understand that when I meet with the surgeon that she may request I have an MRI to check out these things. I also understand that you can only have the MRI from days 7-14 after the first day of your period. My appoint with her is on day 13, so am concerned I'll have to wait another month for the MRI, which would be early November. Should I be concerned about waiting so long? Can my GP request the MRI? 

Also, I still haven't received the results of the hormone receptors from the biopsy. My GP said that the report said that the information was "to follow." Should I encorage her to ask for these results. The genetic counselor was surprised that they hadn't come back yet.

Thank you for any advice you can give!

ballet12

Is there any way that you can get a second opinion consultation with another surgeon sooner than 6 weeks?  I'm not really concerned about progression of DCIS in that time period, but if you are having other symptoms, and because your DCIS was found due to a palpable lump as opposed to microcalcs seen on a mammo, I'd think it prudent to either move up your current surgeon's appointment or meet with another surgeon.  Many of us do have consultations with one or more surgeons before proceeding, anyway.  There is always a risk that there is IDC next to the DCIS.  MRI would be a good thing to do, as well.  I believe that the GP can order an MRI, but it would be better to have a breast specialist reading it.  I'd call your surgeon's office and explain the additional symptoms and see if they can move the appointment up. Also follow-up on the hormone receptor results.  It shouldn't take an additional two weeks.

Best of luck!

SpecialK

An MRI would actually be read by the radiologist, the breast surgeon would be reading the report from the radiologist.  A GP can order it and they can be copied with the report with one copied to the breast surgeon.  That way you can go into the breast surgeon appointment with the reort already in hand.  If you have a palpable lump it may be displacing enough breast tissue to give you the pulling sensation, but since many surgeons do a pre-surgical MRI anyway it might be a good idea to have it so that concern over the tightness can be explored.  The testing info for the  hormonal receptors (and Her2 if that testing was done - often it is not with DCIS) is sometimes done by an outside lab because of the staining technique used.  The delay is usually only a few days though, so I would ask about the availability of the report.  I would also gather all imaging reports - there are usually separate mammo, US reports, if you have not already done so.

spainer

Hi, Thanks for these replies. I am a UCSF patient normally, so wasn't going to pursue another opinion, as I know their breast cancer surgeons are some of the best. Also, as far as I can see, they are the only folks my health insurance covers, so a second opinion would be out of pocket for me. Do you think I should still pursue a 2nd?

The downside to UCSF is that is very difficult to get appointments. I am calling regularly to check for cancelations to get an earlier appointment, but these are rare. If anyone has suggestions about navigating the UCSF system, I'd love to hear them. I've had all my medical care there for the past 18 years....they are great, but definitely large, and at times, slow moving. 

I had mentioned trying to get an MRI in advance of my meeting with the surgeon to my GP, and she seemed relunctant, so I didn't push it. Guess I'll try to revisit it with her. 

Also, one (obviously newbie) question about securing reports. I correspond with my GP via email and when I asked for the biopsy report she cut and pasted the "final pathelogical diagnosis," into a message to me, but I know there is more to the report. Do I have to go somewhere and get some sort of physical print out, or should they be able to email me the full report?

Thank you! I really appreciate this community!

SpecialK

spainer - can't help you with navigation of UCSF, other than to say they have a great reputation.  I did not seek out second opinions either for two reasons - insurance hassle and feeling confident in the doctors chosen initially.  I got my reports from the source, or asked my docs for a copy of the actual report.  You should be able to get copies of your mammo and US from whatever radiology department did them.  The pathology reports are usually obtained from the ordering doc - because they are are often done piecemeal (thus the delay with your hormonal receptor info) it is easier than trying to get them directly from the lab.  Another source for these reports, particularly if you had all of this done at UCSF, is the Medical Records Dept.  I have actually gotten the full surgical report from them also.  Sometimes you have to go in person and sign a release, sometimes they will fax them.  I don't have an email relationship with any of my docs, but I do have online chart with my oncologist so I can see all my stuff there.

spainer

Thanks, SpecialK! I really appreciate the advice. I'll contact the hospital's medical records.

ballet12

Hi Special K, I know that the MRI is interpreted by a radiologist, but I thought that it would be best sent or delivered to a breast surgeon rather than the GP.  The breast surgeon would more likely be able to make sense out of it, and know how to move from there.  UCSF is at the "cutting edge", sorry for the pun, with regard to the new views on DCIS.  They are doing some research on pre-surgical treatment trials with Tamoxifen, even eliminating the need for surgery for some.  At the same time, being the "home" of Dr. Laura Esserman, they also view DCIS as pre-cancer and Dr. Esserman is fond of moving toward lesser treatments, and even not identifying DCIS on mammos (except high grade DCIS--which is a crazy notion that you can only try to find the high-grade stuff).   Finding DCIS in a palplable lump can actually be a higher risk factor for recurrence than finding it in microcalcs. You also seem to have comedo necrosis, which is a risk factor.  Best of luck. Hoping for the presence of no invasive disease, and I hope the smaller nodules are not serious.  Hopefully, you can move up your appointment, if you tell them about your current symptoms.

dogsandjogs

Be sure to check with your insurance company about an MRI. My breast center had to get an ok from my insurance which did delay the procedure. So maybe you should check with the insurance company first?

spainer

You all are so great--thanks so much. Good advice about the insurance. I do know about Laura Esserman's take on DCIS (and she is actually on sabatical, so I won't be seeing her), and wonder if it impacts protocal at UCSF. It makes me wonder how this was missed in my 11/2012 mamogram if I found it 6 months later as a lump. Oh well--foward.

ballet12

Well Laura Esserman is a radiologist, not a surgeon, so you wouldn't necessariy see her anyway, but you actually need to be treated by a surgeon and most likely radiation if you don't get a mastectomy. Glad it was caught however it was caught, and at least it wasn't (so far) IDC.  So many women here had their tumors missed on mammos.  Hoping for negative on the BRCA.

spainer

Just FYI -- Esserman is indeed a surgeon (and breast cancer oncologist), and one of three different surgeons currently in the UCSF breast cancer center (just happens to be on sabbatical right now). 

http://profiles.ucsf.edu/laura.esserman

ballet12

I stand corrected.  Glad you are in a great place and hope the other surgeon will see you soon.  Sounds like an awfully long wait.  I'm treated at Memorial Sloan-Kettering.  They are also a big and bureaucratic place, but I only waited two or three weeks, and they even call you with cancellations, but they also have many more surgeons on staff.

deb1973

I'm so sorry you are going through this. I am an ex-UCSF patient myself (I did not have treatment for my DCIS there) and have also dealt with UCSF extensively with the illnesses of familiy members. 

As others have said, DCIS is non-invasive so there is less of a ticking clock involved here, but everyone is an individual and you can't really know your risk level without further testing and a doctor's advice. In my case, I was advised not to.wait more than five weeks for treatment since I had several risk factors (young age, comedo necrosis, estrogen negative, large size, etc.) I was able to seek an out-of-state second opinion & be treated in the Bay Area in that time period.

Please keep on trying to get the appointment moved up and definitely double check your insurance coverage about the right to seek second opinions. Either Cal Pacific Medical Center or Stanford would get you in sooner than five weeks. Dr. Grissom.at CPMC & Dr. Dirpas at Stanford get high patient reviews.

UCSF has many talented, compassionate individual doctors, but it can be a quagmire when you are not yet on a physician's radar. I don't know if it's possible to leave a message directly for your UCSF surgeon letting him or her know that you are symptomatic and would appreciate an earlier appointment, but it might help. Or maybe see if your general practitioner would be willing to advocate for you. The quickest response I witnessed was when another UCSF doctor was essentially the referring physician for my loved one and had thoroughly briefed the other doctor about the case. 

If none of that is feasible, I would also move ahead with the MRI with your GP, as the others suggested, and make sure that the surgeon is copied on the results.

Hope that you are able to get some good progress soon!

spainer

I can't believe what a wonderful resource these boards are. Thank you so much Deb73 for your advice--it means so much to me. I had pursued possibly seeing Dr. Grissom, but the insurance wouldn't cover it since an in network dr would see me (just with a long wait). But I will inquire about using her as a second opinion, as I didn't think about that. 

deb1973

Hi Spainer,

I have my fingers crossed that you are able to be referred to a breast surgeon as a second opinion since you already have your diagnosis.

Also, if your insurance has a nurse advocate program, I would definitely take advantage. I have been pleasantly surprised by how dedicated and helpful our nurse advocate has been about making sure we are aware of all our options.

Anyhow, best of luck getting some good resolution and progress.  Please feel free to PM me if you have any questions.

Take care,

Deb

spainer

Deb,

I'm happy to report that I've gotten my appt moved up a week (Oct 4)! The week following is the right time in my cycle to have an MRI, so the surgeon can order it and I think this will work out perfectly. I connected with the surgeon's scheduling nurse and told her I was feeling other lumps and she found the earlier appt. I'm really relieved. 

I did inquire about second opinions with my insurance. I have to have the surgeon put the request in for me. So, it seems a little awkward, but I guess I'll ask when I see her. I think it might be better to wait until I have a little more info as well. Requested my written medical records (takes 2 weeks) and films yesterday, so am happy that's in process. 

I don't know if she is a nurse advocate, but I did recieve a call last week from a woman at my health insurance company who will be following my case. I've already called her twice to ask questions and she's been very responsive. 

No word back on the hormone receptor info. My GP said she contacted the pathologist yesterday. It's been three weeks since the biopsy, so seems like the results should definitely be there.

In general I am just "on this" every day in a way I'm not in other aspects of my life, and am being a strong, yet friendly advocate for myself at UCSF. Luckily, I'm in surprisingly good spirits (having the appt. moved up has definitely helped) and so am just doing what I need to do. Thanks for all the good advice. I appreciate you're PM offer, and will do that if I have some more specific questions. 

Thanks again!

deb1973

Hi Spainer,

I'm so glad that they were able to get you an earlier appointment.  It is great that you are being so proactive about gathering your records and prepping ahead of time!

Good on you for being assertive and gracious.  Never be afraid to ask questions. It's unfortunate that you have to submit second-opinion requests through your surgeon although I did tell my doctor about my second-opinion requests as a courtesy. We all have very different reasons for seeking second opinions and doctors can sometimes mistakenly think you are questioning their judgment. I definitely sought more second opinions than the average patient, but my strength/source of personal empowerment has always been through research and I lost my father to a very scary cancer. Talking to as many good minds as I could about my diagnosis helped me feel like I had a more nuanced understanding of my diagnosis. I hope my surgeon(s) understood that.

Anyhow, I am sending you lots of positive energy and hope that you get the best advice and best news possible when you see the doctor next Friday.  Please keep us posted on how you are doing.

Take care,

Deb