Just diagonosed with IDC and DCIS plus results of receptors.

Hippmark

Hi, I'm trying to process everything myself as my PCP is just not well informed about results. But I have been reading this site for 2 weeks.

My diagnosis is I received Monday is:

INVASIVE DUCTAL CARCINOMA, MODERATELY DIFFERENTIATED, 9 MM, SEE NOTE.

- DUCTAL CARCINOMA IN SITU (DCIS), CRIBRIFORM TYPE WITH INTERMEDIATE NUCLEAR GRADE, AND NECROSIS.

They put the Tumor Grade as 2 of moderate differential

Today, I received the Hormone receptors:

ER +

PR -

HER2 -

Ki-67-50%

Best I can interpret before I see a surgeon who I hope will know something more than my PCP is that it is a medium growing tumor. But that Ki-50% score means more aggressive than maybe a Grade 2? Not sure. Sad when you have to interpret yourself!

PCP did not put a rush to see a surgeon so they tried to give me my first surgical consultation in January! I told them to rush it and now am waiting for an appointment.

Of course, I was told by the biopsy people that if it is cancer, they will move everything along very quickly. But I am the one doing all the leg work it seems to push it along. Is this normal?

Thank you for any comments!

MountainMia

Hi Hippmark. Sorry you find yourself here. Yes, wait for the surgeon to interpret your results. They will use a number of different things to recommend a treatment plan. As to any hurry for consultation or surgery, the sooner you meet with someone and begin a plan, probably the sooner you will start to feel some control over the process. That said, breast cancer is rarely an emergency, and having a short delay is rarely a problem. Is it normal for you to be doing the leg work? It is for some medical systems, and not at all for others. In my cancer clinic, I didn't need to chase down much myself. But that varies a lot, I think.

Best to you.

Waves2Stars

Hippmark, there are probably delays due to holidays and end of year deductible rush jobs. Are you allowed to select your own surgeon, or must you have a referral? Maybe you could pick one, then ask your PCP to refer you there? There’s a lot of anxious waiting with this dx, but I wouldn’t feel comfortable waiting 6-7 weeks for a consult! You will likely be waiting another couple weeks after that for treatment!

Try not to get too wrapped up in your path report. You will get more accurate and complete information when you have surgery. It’s very, very hard to balance getting a quick start education in BC with over diagnosing yourself, or worse, predicting outcomes! I’m glad you’re here so you can get info and support from people who know exactly how you feel

Hippmark

I am one of those who also is trying to do the "rush" job as my deductible is paid for the year. I understand about the holidays and knew it would be difficult to schedule. But I would at least have hoped that I could SEE the surgeon before 2 months go by! That seems unrealistic to me.

I don't consider an appointment with a surgeon 6 to 8 weeks out as "moving things along quickly."

I CAN select my own surgeon and had two in mind but PCP recommended someone else (who also had excellent reviews) in the same Cancer Unit. But, I must have a referral for each and every specialist appointment (because of my insurance coverage).

I am a planner by trade as well as a researcher, so it is my tendancy to find out about every term and diagnosis. However, you are correct that I can't plan my own treatment. Just trying to get a "sense" of what my own diagnosis means as it is all still a shock. And heaven knows, if I am waiting this long to talk to someone who knows something more than I, that could be awhile!

Waves2Stars

Then since you have the ability to choose, do it! If you don’t like the first surgeon you meet, try the next! It’s not unheard of to do these things, and you aren’t being weird or a big Karen for trying to move things along. Get someone sooner who could possibly run some additional testing on that biopsy, which is great info to have before you meet your oncologist. To be clear, I don’t think there’s a bunch of women rushing to get BC surgery just in time for the holidays to save a couple bucks, lol, but I think OR’s will be quite busy, so it’s best for you to get your Cancer Crew assembled sooner rather than later in case there’s an opening. It was about seven weeks from biopsy day to surgery for me because we had a family vacation scheduled in that time. It feltpretty harrowing, but it turned out okay.

Hippmark

Fast forward. I took matters into my own hands and now have an appointment 11/30 with an Oncologist, Surgeon and Radiologist all on the same day from the same Cancer group. I felt it was best to go that direction as they can all talk to each other quickly. Not who my PCP recommended, but I haven't heard from any of them! They all had good reviews, so...we'll see.

Now my concern is my high Ki-67 score of 50. Yes, I know, wait. But I really do not want to have chemo (many reasons for that) and would like to have lumpectomry plus radiation and probably will be recommended for Tamoxifen with a 99% ER + score. The Ki-67 score floored me. Have not had Onco-type test done as yet.

But, at least I have 3 doctors in 12 days instead of one doctor in 2 months.

ctmbsikia

Good for you for getting things moved along! Usually once the biopsy confirms they assign you to a nurse navigator. Feel bad you had to do this all on your own! I was also diagnosed in Dec. and was whammed with that years deductible as well as every year since! I get that you want to get in while you have the coverage. I just schedule 2 tests for Dec just for that reason. I don't know and don't think I have a KI67, so I wouldn't get too stuck on that number. There are other factors at play that could keep the oncotype score down where you won't need chemo. That test is usually ordered with the surgical tumor. Best wishes, let us know how it goes.

Murfy

Hipp, your surgeon will likely send a tissue sample to Oncotype, as your tumor is >5mm and in the early stages. You are PR- and have a high Ki-67, so your Oncotype might also be elevated. Many (but not all!) have an Oncotype score similar to their Ki-67. Mine was spot on! I sought 3 outside opinions and all recommended chemo, so I bit the bullet and, now, have no regrets.

Best of luck to you in this unexpected adventure. You will prevail!

Hippmark

No matter the oncotyoe or the Ki-67 score, I would have radiation and take Hormone drug therapy, but will not have chemo. If I have a 5% more chance of recurrence without chemo, then that is what it will be. I also want a lumpectomy

I suppose everyone has their reasons of the choices they make and I have mine too. It comes back, then I can make further decisions of course at that time. I think chemo is a very personal choice that everyone has to make. It's just not for me for many reasons.

Hippmark

The nurse navigator team must be very busy because they basically were no help at all. I was very surprised by that as the sheet they gave me to call them basically said they would do everything but cook me dinner!

I sent an email and said I was disappointed in their response, after I had already tracked everything down myself! All I got was "we look forward to meeting you." Sheesh!

When I took care of both my parents, I realized early on that you must be your own patient advocate. Do your own research, find the questions to ask and question just about everything any Doctor tells you. Why? Why? Why are you recommending that? Etc....

I'm professional about it, but pushy, ya know?

exbrnxgrl

hippmark,

I agree that everyone has reasons for making tax choices. If your Oncotype score is high I wouldn’t be so quick to dismiss it. The thing you are trying to avoid is not a local occurrence so much as a metastatic recurrence. A local occurrence, i.e. in the breast, is not life threatening. Once you have a metastatic recurrence there is no cure, just treatment until the end.

Anx789

hippmarik, I agree with Exbrnxgrl. Do not dismiss chemo too early. After treatment, you will be wondering if the treatment you chose will work or not, unfortunately only time will tell. You might deal with anxiety, too, so you want to make sure you did everything to fight this disease. I was also hesitant at to do chemo, but I’m glad I did.

Hippmark

Well, that certainly scares the you know what out of me. I did not realize that a higher score means that it could metatisize to other places! I thought it meant a higher chance of recurrance in the breast!

That throws me into a different level of anxiety of course. All I can hope for now is that my Oncotype score comes back lower than the Ki-67 score shows. There are so many reasons that I do not want to do chemo (previous friends I know who have had it). And I live alone and must work to pay bills. Many more factors.

This is much more difficult news to hear than the original "it's still small and lymph nodes look clear" report. I agree though with Waves2Stars that it is difficult not to get too wrapped up in the path report. But that Ki-67 score did throw me WAY off my small pedastal I'm trying to stay on.

wondering44

Hippmarik,

I am sorry that you find yourself here; you have found a fantastic group to converse with throughout the process.

Get prepared to do the leg work for your cancer treatment and be your patient advocate. Your PCP won't be the path planner for your treatment plan. Push off the PCP and their lack of concern to get it done quickly. It should move quickly with the dx.

Your MO may or may not add chemo to your plan. Before my surgery, I was told I would more than likely need chemo. After my surgical pathology and Oncotype score results came in, the MO and second opinion MO said chemo would do more harm than good. Every treatment plan varies for each person. That first initial diagnosis is simply preliminary to the surgery pathology results and Oncotype score.

The hardest part will more than likely be the waiting between the results and the treatment plan. It is tough. However, you have an amazing group of women out here to support you through those tough days.

Waves2Stars

Okay, I don't want you to get your hopes up, but I want you to help you understand you and your doctors may not have enough info until oncotype or surgery. My ki-67 was 40%. Yikes! It put me at a Grade 2. My oncotype was only 14! But the oncotype score was how they determined my treatment. However, final pathology after surgery put the ki-67 at 15%! My RO said that score is usually very close to the oncotype, and sometimes it's not, based on how pathologists read it.

Also, when you have surgery, you may get some surprises that force your hand with chemo. It's in your best interest to work with your MO to follow through on the best treatment they can give you.

This is the actual educational drawing my MO did on the back of my final path report. The circle is the breast, the squiggly thing is the tumor, the worm is the lymphovascular or perineural escape route for the black dots, which represent cancer cells. Even at the initial biopsy it took two people to discuss and plan the route they were going to weave the needle through because there was so much vascular interference. So I likely had more than one “worm" in the tumor area. This was scary to me, and still is a little. But they didn't suggest chemo, even for this, but made clear I need to take endocrine therapy to prevent mets from making an appearance. I wanted to do everything but that, like everything. I literally tried making deals with the RO!I don't get a choice if I want a better chance to prevent recurrence, and the meds haven't been half bad!

This is a good time to practice acceptance. You will still get scared, sad, angry before you finish treatment, but know you can get through this thing you didn't want to happen and these treatments you didn't want for yourself. Practice being open to the best help your doctors can give you. Also, see if someone can go with you to your super appointment day because you will need another set of ears. If not, it's okay for you to let your doctors know you're going to record the visit on your phone. Don't ask for permission to do that, just tell them you're going to do it. And remember the info you have right now about your pathology is more like looking at the outside of a menu! You won't know what all is going on or what the cost will be probably until surgery

Hippmark

Thank you. It is very scary. I guess I can't plan my cancer journey myself afterall. Can you tell that my job is a meeting planner?

SuQu31

Hippmark,

Bwahahaha. I never realized what an overwhelming need for control I had until this happened! I tried my best to figure out how to make everything go my way on my timetable, and I think that is a natural reaction to this life-changing, uncontrollable event. I even joked that I would have performed my own surgery if I could!

exbrnxgrl

Hippmark,

I didn't mean to ratchet up your anxiety, just to inform. A local recurrence in the breast will not kill you. The idea behind chemo is to prevent metastasis which will kill you. So the Oncotype score looks at how effective chemo will be for you plus it assumes that you will follow it up with anti-hormonal therapy.

The idea is to keep you from developing metastatic disease. If your Oncotype score is low, great, if high have a talk with your doctors about your concerns and do consider it. You can brush off a local recurrence and say you'll deal with it if it happens but the issue is metastasis. That's what the chemo is after. Take care.

Hippmark

It's ok. I didn't realize that chemo was to "mop up" those cancer cells that might escape to metastisize. That took me way down a different rabbit hole for chemo of losing my hair and the sickness involoved (to whatever degreee) and how am I going to work (I am a contractor) and my lack of any local support and and and....the cost...Plus I have Lupus...

So you see, it all goes into another Universe with Chemo. Just not sure how I am going to manage it all and it's already been a tough couple of years. That's all.

Thank you everyone for your responses. I just have to get used to this new information and try to manage the best I can.

SuQu31

Hippmark,

Please know that I did not mean to make light of your concerns, but to share with you the very real loss of control that this process creates. I learned to laugh at my attempts to control everything, including surgery schedules, as humor is one of my coping mechanisms. You were smart to go ahead and make the appointments yourself and get that part moving forward. Control what you can and the experts will help you make good decisions. Then you will deal with whatever you need to deal with. But please try to wait until you have all the information and take things one step at a time. Easier said than done, I know.

Take care

Dres123

I agree on not dismissing chemo. My wife had a local recurrence/residual disease (perhaps left over from the prior surgery) less than a year after original diagnosis. The first Ki-67 was 5%, the second was 40%. The first oncotype was 11, the repeat was 14. So why the recurrence? They don't really know. But they suspect that the recurrent tumor was there all along, and maybe was amplied due to an IVF attempt we had in between. We were fortunate to still be early stage, but the second recurrence + high ki-67 triggered a recommendation for chemo, even though the oncotype was still low.

Chemo isn't easy, but it's doable, and the peace of mind is worth it. Best wishes!!

MinusTwo

Hippmark - I had chemo AFTER I had a local recurrence at 2 years & before my second surgery. I live alone & really didn't have any serious problems. I drove myself to & from every treatment & appointment. I worked, but luckily mostly at home. Sure I got tired, but never had nausea. Sure I lost my hair, but I used Latisse on my brows & lashes so I didn't totally lose those. Hair came back. Sure I lost a bunch of weight that I didn't really need to lose. Weight came back. Horror stories are easier to find than those who made it through w/few problems. I'm now 7-8 years post treatment & walking 6 miles a day. Don't write chemo off until you have all the results.

Salamandra

Hi Hippmark,

Given the complexity of your situation, I strongly recommend you find a social worker who can help you navigate any benefits that might be available to support you during treatment. Social workers who work with cancer patients are experts at finding funding, support, and resources, and can help a lot with the paperwork and logistics.

Your cancer center may have a social worker for you on staff, if so, great! If not, I also had access through my employer, and also through an organization called Sharsheret, which is open to everyone.

Hippmark

Thank you everyone for your thoughts. Your responses have changed the way I am looking at this. I appreciate each and every one of you! YOU have become my support network!