Confused and afraid after reading pathology report

ConsideringTheLilies · November 2014

Hi. I've been lurking on this wonderful site since my diagnosis on September 29 and I find myself in a scary place right now. I went in for my yearly screening mammogram the week before. I mentioned to the technician that I had been experiencing a small area of itching on the outer quadrant of my left breast. She noted it during my procedure. I got the dreaded call to come back for a diagnostic mammogram, ultrasound and possible biopsy. My results came back as 1.5 cm ILC and it happened to be in the same area that was itching.

I have a strong family history of breast cancer. My mom was diagnosed in 2003 and then had recurrence in both breasts in 2013. Both of her sisters died from breast cancer. Because of this, I opted for BMX. I saw a BS at the same hospital that diagnosed me. She examined me, (dismissed the itching that I described) and agreed to do the mastectomy. I felt a nudge to go instead to a comprehensive cancer center. The surgeon there was very thorough and I felt more comfortable about my outcome at that facility. She casually mentioned that the itching was something that she hasn't seen for ILC. I unknowingly wrote it off in my mind as just a fluke and maybe I just had some sort of dermatitis.

My BMX surgery was on October 24. My pathology report was given to me at my follow up appointment. The surgeon told me that the surgery went well. The area was 1.5 cm at it largest point, the sentinel node was negative and the margins were clear. This was all so encouraging. They sent away for my oncotype and scheduled my first appointment with the MO. My appointment was this past Tuesday. He barely examined me, told me get dressed and came back in to discuss treatment options. My oncotype was 17. He told me that he didn't think that I would benefit from adjuvent chemotherapy and that if I were his family member that he would recommend aromatase inhibitor for 5-10 years. I had questions, he actually told me that I was too intelligent and that he preferred that his patients weren't so well read. He then said, "go home, take your pill and live your life". I went away a little put off but relieved at the thought of no chemotherapy.

When I got home I decided to look more closely at my pathology report. There are 2 important things that weren't brought up by the BS or the MO. The report lists that I have lymphovascular invasion AND dermal lymphovascular invasion. I get the lymphovascular invasion part but researched dermal lymphovascular invasion. From what I've read, this indicates that I may also have IBC. How did he miss this? I called Genomic, the lab that determines oncotype scores, and was told that those things are not factored into the score. I was told that is a separate issue that needs to be factored into my continued therapy. I called the MO's office. Five minutes later, the MO was on the phone and very irate. He said that I was to stop reading about this and just take my pill. When I told him that I have concerns, he said, "fine! if you want chemo I will be in the clinic next week. Make an appointment!"

I am working on getting into University of Michigan asap for another opinion. They were closed for the past 2 days for Thanksgiving.

I know with IBC it is very important to address it right away and I am scared right now. Typical protocol is neoadjuvent chemo, surgery, and then radiation with possibly more chemo. I've already had my BMX. Has anyone else been diagnosed with IBC by pathology after surgery for another breast cancer? I just need some reassurance. Thank you so much.....Linda

Beatmon · November 2014

I don't know anything about any of this, but I certainly wouldn't want to trust my life to such a jerk. I would do exactly as you have done and find another Dr.

wrenn · November 2014

Hopefully someone will come along with an answer regarding pathology results but I agree that you should run fast from that MO.

So sorry you are dealing with this. Stick around here for great support.

susan_02143 · November 2014

So, do you want this person as your primary caretaker for the next 10 years? Will you enjoy returning every 6 months, talking about your side effects and how your body is feeling [the best diagnostic tool]? No, I didn't think so. Find someone that will be your partner until breast cancer is in your rear view mirror. Your oncologist will be a large part of your life for a very long time. It is important that you have a respectful and mutual relationship.

And, he may be right. AI's might be the exact treatment that is best, but, he should be willing to discuss your pathology as a simple bottom baseline.

All the best,

*susan*

ConsideringTheLilies · November 2014

Hi Susan,

I agree. I don't plan to return to his office. I called earlier this week for an appointment at another Comprehensive Cancer Center. They offered me December 18 at the earliest. That was before I looked over my pathology report more thoroughly. I'll be calling on Monday morning. I'm praying to get in sooner than that given the nature of IBC.

Thank you.

Moderators · November 2014

Hi Linda-

First off, we want to welcome you to our community here at Breastcancer.org. We're very sorry for what brings you here, but we're so glad you've found us.

We're also glad you've taken the first steps towards finding another doctor and getting a second opinion. He doesn't sound like the kind of doctor you want to have treating a hangnail, let alone one you'll be working closely with in the coming weeks and months and years to get you and keep you healthy. You have every right to all the information regarding your diagnosis, and you have every right to be a part of deciding your treatment plan. Hopefully you're able to get into U. of Michigan ASAP for a second opinion.

Please keep us posted!

The Mods

wrenn · November 2014

I looked up dermal lymphovascular invasion and you can have it without the presence of IBC. I don't think I can post links here but they may not have mentioned it because there was no evidence of IBC?

ConsideringTheLilies · November 2014

Hi Wrenn,

I hope and pray that you are right. I can't get my brain wrapped around something like that going unmentioned at such a regarded facility. Thank you so much for your reply. Have a wonderful night. Linda

First_Wild_Signs · November 2014

Considering, I was recently dx with ILC, waiting to see plastic surgeon so I have not had surgery yet. Just wanted to say that I have itching on occasion exactly where a mass of lumps are located on the third outer porting of my breast but not on the single palpable lump I have and I also had questions about IBC....lots of them. I had a punch biopsy which came back negative but of course it depends on where the biopsy was taken. I was told that if there is IBC it will be taken care of with the mastectomy. No one is concerned about it except me. I have a great rapport with my breast surgeon, she takes her time with me, responds quickly to my inquiries so I trust her as much I can trust my life to someone I just met but if she addressed me in the manner you described, it would be her first and last time. I hope you are able to find another doc who is attentive and professional. Keep researching and keep questioning

TwoHobbies · November 2014

Considering, I think you have to have other signs of IBC. Read this: http://labmed.ucsf.edu/uploads/210/101_new_ajcc_st...

I would definitely get a second opinion and probably find an oncologist who will explain and not dismiss my concerns! They might come to the same conclusion, but you should get a full explanation.

sbelizabeth · November 2014

Considering, I've been through this fog of diagnostic terminology. I found my BC due to a red spot on my breast, about 3" in diameter. It had the classic peau d'orange texture, but it was limited to just that one spot. I had a mammogram and they found a tiny, 1.2 cm lump underneath the red spot, biopsy revealed it as IDC, and I had a lumpectomy. Then my MO wanted a biopsy of the red spot and turns out, it had dermal lymphatic invasion. We moved on to mastectomy and 37 radiation treatments.

I asked her, "why isn't my diagnosis 'inflammatory breast cancer'"? She said, IBC is a clinical diagnosis, not a pathological one. To meet criteria for IBC it must involve a minimum of 1/3 of the breast (or is it 2/3? I can't remember!) and display other classic clinical signs. She also said, at some point, it becomes a matter of semantics. Had I waited until the dermal lymphatics throughout my breast were packed with cancer emboli, I would have met criteria. But the treatment, for me, was the same. Mastectomy with removal of as much of the skin as possible, radiation, aromatase inhibitors.

Blessings to you as you navigate through all this. Yes, find another physician. And a letter to the jerk, telling him exactly why you're leaving his practice (in a business and non-confrontational manner) might be a good thing.

susan_02143 · November 2014

well, a direct letter does nothing at all.... a letter to his supervisor almost always does.

*susan*

mammalou · November 2014

My story is similar. My breast cancer was diagnosed after about 1/2 my breast turned pink. I also had skin thickening. After a clean mammo I had an MRI which showed a suspicious lump. After excisional biopsy it was determined that I had a 3.6 cm IDC tumor. They did a punch biopsy at first surgery and it came back negative. I had a second surgery for unclean margins and had a second skin biopsy at this time. This time my skin came back with dermal lymphatic carcinoma. I was worried sick about having IBC. My BS wrote in my file that I had equivocal IBC and told me that she felt they probably caught an early IBC. She told me they were treating me as if I had IBC, so it didn't matter what they called it. This uncertainty bothered me for a long time but I have learned to live with it.

I do think with DLI you should get a second opinion from U of M. This warrants additional questions and your doctor doesn't appear to be too open to that.

Good luck, hang in there, and let us know

First_Wild_Signs · November 2014

mammalou,

I also have skin thickening and approximately 1/3 of my breast turned pink with thickening and inverted nipple. I was told that the tumor caused lymphatic blockage which caused the pink color and thickening. My MRI noted the thickening and inverted nipple, suggested possible Pagets and asked for clinical observation to confirm Pagets or IBC. BS ruled out Pagets and IBC. Again, punch biopsy came back negative but I have not had a mastectomy yet. Hate to say it but I am preparing myself for the final path report after my mastectomy to contain worse news. My path report for the punch biopsy is as follows:

FINAL PATHOLOGIC DIAGNOSIS

SKIN, 2 O'CLOCK, PUNCH BIOPSY:

- SKIN WITH MILD SUPERFICIAL PERIVASCULAR INFLAMMATION.

- NO MALIGNANCY IDENTIFIED ON H&E AND CYTOKERATIN STAINS.

mammalou · November 2014

Good luck to you wild signs... My BS and MO told me the most agressive thing to do was to go straight to chemo before MX. That is what I did and my final pathology after chemo and MX showed that the chemo had killed all the cancer. That was a good feeling! I really believe that if the first biopsy done had shown the skin involvement, they would have classified me as IBC. I also had some Peau-de-orange, but I didn't have evident sheets of cancer in my breast.

ConsideringTheLilies · December 2014

Thank you all for your responses and help. I am so very frightened. I presented to 2 breast surgeons with a DX of ILC but also had slight edema in that breast and a small area of itching. It was mentioned to both and was dismissed. At that time I was unfamiliar with IBC and it's characteristics. No punch BX was done. We proceeded with the BMX. Now I sit, post BMX and with a pathology report that shows dermal lymphovascular invasion. I'm not diagnosing myself but that information makes me so concerned about IBC. From everything that I've read, it looks like they put the cart before the horse. I should have had a course of chemo before the BMX. The reason behind this is that if there is IBC, an immediate mastectomy just stitches back the dermal lymphovascular invasion allowing it to grow together and spread. It's too late now. I'm past that point now. Has this ever happened to any of you?

U of M still is unable to get me in any sooner than December 18 as a new patient even after mentioning the pathology findings. That seems like a lifetime away when I consider that I may have IBC that is growing and spreading everyday as I sit and wait. I am feeling lost and doomed at this point.

Yesterday my PCP took it upon herself to get me in to a different onc on the 10th at a different facility. I'm torn because it's not a Comprehensive Cancer Center, though it is a relatively large hospital. What would you do?

Thank you again for your help. I appreciate it more than I can express.

wrenn · December 2014

Another opinion can't hurt and you can keep your appointment for the 18th in case you are not satisfied with what they tell you on the 10th. Hang in there. It is scary to have to wait.

goodprognosis · December 2014

You poor girl. You are so overwrought with worry. I agree with everyone else, another opinion on the 10th won't hurt. Keep the 18th appointment but head off on the 10th just to get some peace of mind. Write down a few questions and concerns before you go.

The best of luck to you.

(((((hugs))))

Confused and afraid after reading pathology report

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