Diagnosed IDC - Now What

Welcome, though I'm so sorry you have to join us. This is the hardest part--the waiting and gathering of information. Everyone's care is different, so unfortunately you just have to wait for those appointments and all the information to make plans. Surgery is often the first step--either lumpectomy or mastectomy. If you get a lumpectomy, radiation is always recommended, and not because it makes the hospital money, but because it radically reduces local recurrence rates.

Whether or not chemotherapy will be suggested isn't really known until after surgery, unless your pathology report, when completed, suggests you'd benefit by doing it prior to surgery. You'll have a say in your course of treatment, and you can get multiple opinions as you decide what to do next.

Hormone therapy is often the last step, after surgery/chemo/radiation.

Good luck getting through these tough days. Reading lots of threads here helped me wrap my head around what was coming. Hang in there!

That thing you're thinking of about doing something to shrink tumor before surgery is more often done in Triple Negative or in large tumors or tumors that are attached to chest wall etc. In those cases some people are prescribed chemotherapy first (called neoadjuvant chemo) and then they have surgery after, and sometimes radiation after that.

The more common route is surgery + (possibly) chemo + (possibly) radiation + endocrine/hormone therapy if appropriate. Until you have your full stats it's hard to predict which way they'll recommend to attack it. I know you want to know and plan and get ready; it's frustrating to have to wait. We've all been there done that. It will all feel better once you have your results and a consult.

Regarding the sheduling, there is some time. It's not an emergency, it's an urgency, kwim? There's time to run the appropriate tests, have consults, possibly get second opinions. Here is a write up of the current research regarding optimal timelines with breast cancer surgeries, just so you can gauge when it's too much delay... https://respectfulinsolence.com/2016/01/12/breast-...

Hello Luvall and Cindymb

I am so sorry for your Dx. I was in your place a few months ago. What you need to do now is to find a good surgeon that you trust that takes your insurance, and everyone affiliated with your surgeon, (facility, MRI, Oncologist, etc.), takes your insurance. I had couple of surgeon consults, one at a breast center, another at a big hospital. It turned out the breast center contracts out some services and some things were not covered by my insurance. So I went to the big hospital and made sure every step of the process was covered by my insurance. If time is important, take the earliest day possible but keep calling and wait for cancellations for surgery date. People cancel or get sick so a spot may open. When my surgery date was set, I was told to immediately make an appt with the RO 2 weeks after the surgery date and with the chemo/hormone dr 3 weeks after the surgery date. This way, you don't have to wait longer than you need to to see your new drs and you don't need to get stressed out after the surgery finding drs. and making appts when you should be resting. Also ask your surgeon to get the Oncotype test ASAP so you know if you need chemo or not after the surgery.

Good luck!

mimi

Schweety- I’m sorry you’re back in this position again. If you’ve already had rads once you likely won’t be able to have rads again. Likely mx, and if hormone receptor +, tamoxifen or an AI, if HER2+ then chemo.

Treatment can be based on other health concerns. You do have a lot going on, but nothing they can't manage I would think. They also often base treatment on your age and how active you are. The older you are, the odds of dying from bc vs from something else goes down. The life expectancy from the point an older person is at is shorter then for someone who is in their 30s or 40s. If you are active and lead a full quality life, it will be important to express that to your docs. If they need to take this to the tumore board, you want your doc to advocate for you vs the group looking just at your age and other medical problems.

When it comes to the actual treatment, you may find that your blood sugars rise or go on a roller coaster ride with surgery and stress but that is easily managed with insulin or GLP-1 receptor agonists depending on how far advanced the diabetes is. Unless you have nodes involved, they likely won't do chemo since you're HER2-. Being post-menopausal, you have 5 options available to you with hormone blockers/aromatase inhibitors. they all come with their own set of side effects so if one causes too many side effects that negatively impact your quality of life, then you can try another. Aromatase inhibitors are more effective than hormone blockers and can only be given to women who are post-menopausal. If it was me, I'd start with the AIs. I'm on Femara/letrozole and the side effects are minimal for me (far better than the SEs I experienced on tamoxifen)...a little stiffness/pain in my pointer finger and down around to my thumb on my left hand when I haven't used it in a few hours (goes away within a few minutes when I use it again), hot flashes, and maybe a little more tired than usual. I take my meds at bedtime, but if I stay up for a while after taking them, I get a little nauseous. Whether thats from the Femara, the Biotin, or the Curcumin, I don't know. hormone blockers/AIs can cause your hair to thin...5000mg of biotin a day can help slow it down or stop it altogether. Curcumin can help with any joint pain and hot flashes...its a natural anti-inflammatory. I hope this helps!

I was just given the path report from the surgeon. And although it says intermediate grade...he said it is slow growing. How can that be?  When I questioned him about it he pointed to the ki-67 index of 8%. I have to tell you that did not give me a lot of confidence. How could one test show an intermediate with a growth rate of higher than normal but another say it is slow growing? ? I am thinking he is trying to give me encouragement, and although that in itself is good...I want to know facts, I want to know how serious or not it is because if it isn't any big deal, why should I have to have surgery? Maybe just taking the anti hormone medicine is all that is really needed?

I am so upset. I had to talk to the surgeon yesterday on the phone ( I was in the ER with my husband who was having a mini stroke) and he seemed irritated that he had to call me. I had called because the night before I felt a lump where no one could feel a lump before. When he called back, he was irritated because I had all these other onco type visits scheduled before I had scheduled the surgery with him. He said I didn't need those appointments but it was the Cancer Navigator who scheduled them. Then told me the lump was probably just a small hematoma (without examining me). On my visit with him, on June 6th he said that "What you have is just an ordinary run of the mill cancer". Like it was no big deal. I am starting to feel like giving up already. Like I am just a pay check but more like a bother to everyone. Even when I call the Breast Cancer Navigator lady....she sounds disgusted with me. I feel like everyone I talk to, except here...really could care less. I am scared. But I am ready to give up and just let nature take its course. I apologized over and over to the doc....but he seemed like he was just in a big hurry...and that scares me even more.

 Yesterday was very stressful, as I said I was in the E.R. with my husband for hours...I could not think straight … and now I can't sleep over it. I have been up for hours thinking. I am thinking to get another...different surgeon but the one that was assigned to me was from my primary doc and they are all a part of the hospital system. So no matter who I would chose they are all in the same office!!!! I feel defeated and not worth the bother, to tell you the truth. Yea...I am in tears. Again sorry for the long sob story. 

Has anyone ever heard of being treated with maybe immune-o therapy ??? Or maybe any type of therapy that you don't have to have surgery???  The surgeon said that this hormone therapy will stop the cancer from coming back by blocking the hormones....why can't they just treat the cancer with those drugs and be done with it, wouldn't it also keep the cancer from spreading or going any further by blocking the hormones that is feeding it? It would basically starve the cancer, right??? I am just so confused and do not know what I should do or where to go so that I don't be an intrusion into someone else's life.

Sorry, that I went on and on....

Carol

Carol- I’m so sorry you’re having to deal with BC + everything your DH is going through. Don’t get mad at me when i throw this out there...is it possible you were stressed being in the ER with DH and perhaps you were a little short with the surgeon on the phone and then he just responded to that shortness with his flippancy? It’s something to consider. But, Yes, please seek out a second opinion with another surgeon. I would give that advice even without the phone call with him. Always good to get different views. Not every surgeon in that group will have the same flippant attitude as that one did. But going outside that group can be a good idea. Why don’t you do a new post on this board asking for names of breast surgeons/oncology surgeons that the ladies on this board would recommend from personal experience who are within maybe a 50-90 minute radius from where you live? You can also list the things that are important to you...compassion, not rushing you, taking what you say seriously, taking your cancer seriously even if it is one of the “better” ones, no/low complications, little to no scarring, etc. If you’re just doing lumpectomy, that should be sufficient. If you’re doing just mx with no intention of recon you’ll want to ask additional questions about tidying up the chest afterward. If you’re doing mx with recon, you can ask about PSs in your area for that as well-make sure you’ve researched all 3 types of reconbefore choosing.

The hormone blockers will starve it, however once you’re diagnosed The cancer has a huge head start. Surgically removing it takes away that massive lead and puts you in a better position. It would likely take years on hormone blickers to eradicate it. Also, if you’re not 100% ER+, that means there are other things those cells feed on as well that won’t be addressed with the hormone blocker.

Carol - you have a lot on your plate. Take a deep, deep breath and slow down a bit.

Don't give up. I think the reason some staff at cancer agencies are sometimes a bit blase with early stage breast cancer patients is this: we're the easy ones.

It's hard to imagine it from our perspectives but really, for them, we're the easy ones. We're the ones that are treatable. We're operable, we have clinical treatment plans that are well tested and are producing amazing results. There are many cancer patients who would, if they could, gladly trade in their inoperable, impossible to survive cancers, for early stage breast cancer.

So I think sometimes people who work in oncology get a bit irritated with us because from their perspective, we don't seem to realize how lucky we are - comparatively. And that's the thing, isn't it? It's always all relative. You never know who your surgeon was rushing to treat at that moment.

You need surgery. Cutting the tumor out is the first line & most important part of the treatment. Don't let fear and panic drive your decision making. Your cancer is treatable - let them treat it.

Also, I'd suggest you find out if there's a counsellor and a support group at your cancer agency. With your husband's health issues, your support system will need to be doubly strong.

best wishes for both you and your hubby

Carol,

There are all kinds of doctors. But the only thing that's important is that he is good. I don't need a doctor to hold my hand. I want him to do his job and do it well. If you believe he is good, then you need to suck up to the other things and let him do his job. Some doctors are not people person, but they are brilliant at what they do.

Thank you Lula 73 ~ I am taking dipyridamole for anti stroke with asprin 2x a day and Plaquenill 2  Day for RA. My blood sugars in the morning have been 105 sometimes 98 and once in awhile...134 in the morning. I will ask the doc for those legs things...I hope he will oblige. 

  Thank you again.

My biopsy says:    Predicted Nottingham histologic score; \   `

Tubule formation score 3/3

Nuclear grade 2/3

mitotic score 2/3

Cumulative score' 7/9, Intermediate Grade

Estrogen receptor Positive with 100% of tumor cells with strong average intensity-67 proliferation 8%

Progesterone receptor Positive with 100% tumor cells with strong average intensity

Ki-67 proliferation index: 8% 300 cells counted

Her2 by Fish: Negative for amplification. 

What does cumulative score of 7 out of 9 mean? Just that it is intermediate grade but close to high grade? or am I reading more into it.  I do not understand the Ki 67 proliferation index and what that is all about ..that is the score that the surgeon pointed out and said "its just a run of the mill cancer" . So I am wondering what does that score mean? It looks small...8% that's like nothing...really, but what ever it means, it is in MY body.

Thank you so much

Schweety - I think I had similar scores as yours. The lower the Ki-67 score is the better. Your's is low. Congrats!

Ki-67. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%

After another fiasco with the surgeon about the meds I am on..I cancelled the surgery that was to be done tomorrow. I had lost all confidence in him and his team. I called another surgeon recommended by a lady I know and BOOM! He agreed to see me tomorrow before his other patients first thing in the morning. I am feeling relieved. The first surgeon called me when he got the message and I just told him things were moving too fast and the meds were mishandled in my opinion and I was just felt like I needed more time. He tried to tell me it would take another week to get on the schedule now etc....but all I heard was blah, blah, blah.

Now that I read about that ki 67 test and that mine was so low....I am not so concerned or in a hurry to get it out. I know it needs to go...yes...but I have time. Time to think things through and weigh it all out. I still left the door open for the other surgeon just in case, but unless this other guy is a jerk or treats me badly or his team drops the ball...I will go with him I am thinking. 

I am sure you all think I am just some nut job....maybe I am. But maybe I'm just scared shitless because of all the other health factors I am facing in surgery and beyond. Maybe I am just making too much of it. 

But what I do know and I am sure of....is that you all have helped me tremendously with my fears and faults. And for that I am thankful.

carol. Her2 negative also means your BC is not as aggressive as Her2 positive. You have time to ask around for second opinion. Follow your instincts. You have a lot on your plate and no one thinks you’re a nut case. We were all there before with less health issues. You got this. We are here for you.