first surgeon appointment tomorrow

cm2020

I was just diagnosed last week. IDC, Grade 1, ER/PR pos., HER2 neg., 1.4mm tumor

I am so afraid that with the chaos and everything going on with COVID-19 that I won't get the treatment I need.

This is just all so scary.

I'm scared.

I am 54 years old. Guess I should introduce myself somewhere but I am overwhelmed and start crying so I haven't gotten to that place in the forum yet

Beesie

cm,

Welcome, but sorry that you had to find us.

From what you say about your diagnosis, other than the scary fact that you have breast cancer, everything else appears to be extremely favorable.

Is your tumor size really 1.4mm (and not 1.4cm)? That's about as tiny as a cancer can be and still be found. ER+/PR+ and HER2- is good, and grade 1 means that the cancer cells are slow growing.

Current times are difficult, and undoubtably this will make it more challenging to meet with your treatment team and get through through all the steps of treatment. What's important to remember is that while a breast cancer diagnosis feels like it's urgent and an emergency, in almost all cases it's not a medical emergency. Most breast cancers take years to grow enough to be found, and grow slowly from there; yours, being so small and grade 1, is even slower than most. As you face delays - and you probably will - keep that in mind.

In the mean time, there are lots of us here to hold your hand.

AliceBastable

Ditto to everything Beesie said. Yours is tiny and low-grade, and if there are delays, it won't be a problem if surgery is later.

cm2020

Yes, I know she said 1.4 mm. She said it was about the size of an M&M. So I am correct in my memory, right? Honestly everything has been kind of a blur. A week ago I didn't even know my mammogram was abnormal.

Thank you so much for the support and kind words. I welcome all hand holding and all info and support I can get. Hopefully I will feel better once I meet with the surgeon. The radiologist was wonderful and so very sweet. She explained things to me very well and let me ask lots of questions. She also said many of the things you said. Thank you.

cm2020

Thank you! That is very reassuring and something I can't hear too many times.

Nana2-8

cm202 - Everything said above is exactly why you will find this site so comforting,. You're in good hands and we will be here to hold each others hands thru this. I am on my second go-around on this breast cancer merry-go-round, and I just found out today that my April surgery date has been pushed into May. Remembering back to when I was diagnosed the first time (nearly 5 years ago) I think I might have been slightly hysterical at the notion of being delayed. This time....I'm very relieved. ~ Speak up about any of your concerns.....we're here to help. You're a bit over-whelmed right now, rightly so....but we will ALL get thru this.

cm2020

Thank you for the reassurance. My anxiety is high on a good day...add in COVID-19 and all the worry stress and hell that it is bringing....then put a brand new cancer diagnosis on the top and well, I am a mess. I have been so afraid that I wouldn't get the care and treatment I need and that I will end up with a poorer prognosis or have other complications as a result. Don't even get me going on the financial ramifications of this. That is enough in itself to just make me want to crawl in a hole. I have a 15 year old and I homeschool her. I need to be okay. I have to be okay.

I am sorry you are facing more surgery and a new diagnosis. Cancer just sucks (prior to being a sahm i was a peds oncology nurse).

Nana2-8

BOOM!!! See....the more you vent....the more we can help you!!!! Bless you for schooling your daughter. But you hit a hot button of mine! ~ I used to volunteer at Childrens Hospital and floated from ICU to Intermediate to the HOT unit (you know what "hot" means!) and one of the foremost thoughts in my head while going thru this the first time was: If those little sweethearts can get thru their treatments, etc. - then, by God, so could I. Their resiliency taught me more than I thought I needed to know.

OnlyGirlof5

Hi cm2020, you will find a lot of support here. I wish I had reached out when first diagnosed in December. I was so overwhelmed and in denial, I just avoided all talk cancer. I was very worried my surgery was scheduled 10.5 weeks after Dx, but all the experts reassured me the cancer was slow growing and I would be fine. I am now about 3.5 weeks post-op. Almost every single fear I imagined turned out to be so much less than I had imagined.

As the other said, you are in good hands here. We will all help each other get through this COVID chaos.

Hang in there.

toria1212

Good evening sweetie,

I also have my first appointment with the BS tomorrow a.m. Neither my fiance nor my adult daughter may accompany me into the building due to COVID19, I have the exact same diagnosis as you except my area is 5mm. I found out last Thursday and was BLESSED to find this forum that day. I have been a puddle of tears, and then relieved, happy even, then a blubbering fool all over again. Everyone here suggests that as we get more information about our specific case and get a "plan", we will calm a bit. I hope so! The virus stuff alone makes one anxious and afraid....

And I applaud you for homeschooling-my 24 year old son was homeschooled due to high anxiety in grade 6, when I had two babies running around. Needless to say, it did not go that well '). I hope you will find comfort in knowing that we both have great support, and information, here as well as each other. We got this! Sending much love and (((hugs))) your way.

PS I perused the insurance stuff, but I have bottom of the barrel Blue Care Network and a global referral was approved(I am going to a BS recommended by my longtime gynecologist, whom I have great trust in) so I am moving forward, and trying not to focus on the cost/insurance aspect of this. My deductible is high(7000) but I have excellent credit and will do what is necessary to be well. xx

Moderators

Welcome, cm2020! As you've seen already from the comments to your post, this is a supportive place and we're all here for you. We know this is so much to process, on top of everything else going on, but just try to take it one day at a time. Please keep us posted on how your appointment goes!

The Mods

bcincolorado

toria1212 and cm2020,

I am so sorry you too are dealing with this at all. Especially at this time. Cancer is tough to deal with but during a pandemic it is tougher. I was 49 when I was first diagnosed and ER+/PR+/HER2nu-

My breast surgeon told me it was "nice cancer" as far as cancers are concerned because it is not super fast aggressive and easier to treat. You have to trust your medical teams.

Depending on where you are may depend on treatment options right now immediately. Our State is kind of on lock-down and only emergency surgeries and births can happen right now. They may decide to put you on meds to hold it off if they can.

I did have a friend at church who chose to NOT do any surgery and she was a nurse believe it or not!!! He had a young child and hers was different tumor than mime and knew she'd need mastectomy right off and could not take time off work at all and wanted only meds. She knew she was ER+/PR+/HER2nu- from the biopsy.

She did tamoxifen treatment and mammograms every 3 months to monitor to make sure not growing. She is fine right now and still monitoring frequently and has not had surgery and is 15 years after diagnosis if that is of any comfort to you.

Best wishes to you both.

Beesie

"Yes, I know she said 1.4 mm. She said it was about the size of an M&M."

Sounds like it's 1.4cm. That would be about the size of an M&M.

1.4mm is the size of the head of a pin.

That said, a grade 1 tumor that is 1.4cm and ER+/PR+/HER2- is still a small early stage breast cancer. So everything else that I and all the others have said still holds.

Let us know how your appointment tomorrow goes.

Beaverntx

cm2020, I have a friend who has also just been diagnosed with an early stage BC who is scheduled for a lumpectomy 2 days after her first visit with a breast surgeon and an oncologist. So at least here a lumpectomy is not being considered elective surgery. Actually, she was told they could schedule so quickly because no elective surgeries are being scheduled. May it all go equally well for you!

cm2020

You are right. If all of those children can get through this then so can we. Thanks for the perspective. Thank you for the support.

cm2020

toria1212 oh I am very sorry that you are also going through this, especially right now with the world turned upside down. I hate you have to go to the surgeon alone today. To my knowledge my husband can come and he is. Guess they could always stop him at the door though. My reactions over the last few days have been the same as yours. Lots of tears but also it just doesn't seem real (actually none of this pandemic stuff feels real either....just like some weird horror movie).

We have a high deductible insurance plan too. I have no idea what they are going to cover and what they aren't. Hopefully somewhere along the way someone will help us with that. You are right, just put the insurance stuff aside and do what we have to do to be healthy. Hopefully it will all work itself out.

Thank you for reaching out and for the support. I will be thinking of you today and hope your appointment goes well and you are reassured (i hope we both are).

cm2020

I am afraid I am going to miss replying to someone (i am still learning how the replies show and how the forum works) so I am going to just respond to everyone at once. Your stories, support, and reassurance mean the world to me. The outpouring of love is just so kind and I am humbled by how you have all taken the time to reach out and offer so much reassurance and support. Your stories are very encouraging and I feel better after hearing them. And now I know that in my fog I misheard my radiologist and my tumor is 1.4 cm. Thank you for the correction. You ladies are truly the best. Thank you ALL so so so much!

OnlyGirlof5

My husband was my rock through this process. I can't imagine not having him with me. Good lord, like we aren't going through enough! I would ask if you could record your conversation so that you can review with your SO afterward. I know even with my husband there and him taking notes, we still forgot details.

Virtual hugs from Michigan. Let us know how things go!

Salamandra

I just want to say hi and good luck to you guys. This is a helluva time to be dealing with a new diagnosis.

Those high deductible health insurance plans are so frustrating. At least it's March and not November, so hopefully you'll get benefit after the deductible. If money is an issue, there are lots of organizations that help breast cancer patients.

Also - it might be worth getting solid local financial/legal advice. Credit card debt is generally dischargeable in bankruptcy, and retirement plans and often homes are usually safe from bankruptcy. So in general, withdrawing from retirement plans or selling/mortgaging a primary residence should be an absolute last case scenario and only after a consult with a bankruptcy lawyer.

Hang in there.

cm2020

I had my surgeon appt today. It went very well. Yes, definitely a 1.4 cm tumor (not mm). Clinical stage 1A. MRI is next Tuesday (under sedation because I am so claustrophobic). My first oncology appt is this Thursday. The plan is to start tamoxifen, and if the MRI is okay, delay surgery until the pandemic is under control. I am so worried about hospital resources and things being so strained under the stress of this virus. My hospitals are reaching out for supplies and hand sewn masks.

I want a bilateral mastectomy (for several reasons) and reconstructive surgery. My surgeon is okay with that. The issue comes in with my insurance. Will they approve prophylactic removal of the other breast. The surgeon said to reach out and find out. The scheduler said they will never commit to whether they will or not. She gave several reasons that I can't remember, but her bottom line was to just wait and once surgery is scheduled see what comes back from the insurance co. She said it is rare for them to deny covering it. I don't know what to do. There really doesn't seem like a reliable way to find out until surgery is scheduled. What happens if they deny it? I have wasted time with the plastic surgeon and prepping mentally for a mastectomy to have to reschedule everything and have a lumpectomy?

I'm overwhelmed, exhausted, scared, and just want to hide under the covers and cry until all of this (including pandemic) has passed.

toria1212 How was your appointment? I thought about you today.

cm2020

Salamandra Thank you for the advice. I can't even begin to comprehend all of this financially. It is just too much. Isn't medical debt the number one cause of bankruptcy in the USA? I hate that we all have to worry about insurance and finances on top of everything else. I don't see how people get through it.

Beesie

"The issue comes in with my insurance. Will they approve prophylactic removal of the other breast."

Legally they have to. Some insurance companies try to refuse, thinking that patients won't fight it and don't know the law, but if you push back, they have to approve it.

Women's Health and Cancer Rights Act - The Federal law

https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-health-insurance/health-insurance-laws/womens-health-and-cancer-rights-act.html

.

The Women's Health and Cancer Rights Act (WHCRA) helps protect many women with breast cancer who choose to have their breasts rebuilt (reconstructed) after a mastectomy....

...

Under the WHCRA, mastectomy benefits must cover:

• Reconstruction of the breast that was removed by mastectomy
• Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy
• Any external breast prostheses (breast forms that fit into your bra) that are needed before or during the reconstruction
• Any physical complications at all stages of mastectomy, including lymphedema (fluid build-up in the arm and chest on the side of the surgery)

cm2020

Beesie Thank you SO much for this wonderful information! I really appreciate it very much.

OnlyGirlof5

cm2020, you will want to make sure your insurance covers prophylactic mastectomy, as that will come into play with the unaffected breast. I just went through this. Insurance companies are not obligated to cover elective mastectomies such as in the case of a woman testing positive for breast cancer genes but no cancer has yet been found. The 2nd line Beesie included is their obligation to surgeries to the other breast for symmetry such as lifts, implants, reductions, etc. It is not specific to the prophylactic mastectomy. Fortunately after much confusion in the beginning, we found my insurance does cover bilateral mastectomy if I had decided to choose this option. In the end, I chose not to have the other breast removed. I am not trying to alarm you, but just provide you with additional information you might want to be aware of.

cm2020

OnlyGirlof5 Thank you for letting me know! It is all just so confusing and so infuriating that insurance has a say at all in what we do. It isn't fair at all.

Beesie

cm2020, OnlyGirl is right - the legislation doesn't specifically say that a prophylactic contralateral mastectomy must be covered and that's why some insurance companies balk initially. But it's hard for them to argue that the words "Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy" do not cover a MX and reconstruction of the contralateral breast if a patient is having a MX and reconstruction of the cancer breast. I've been hanging around here for a long time and I honestly can't think of a situation where an insurance company has in the end refused to pay if the patient has been insistent and the doctor supports it. It might require a few discussions and some pushback, but in the end every situation I can recall resolves as OnlyGirl's did, with the insurance company paying. That's not to say that someone has never been refused, but it would be unusual.

I have however seen quite a number of situations where women have wanted to have a BMX but have been refused by their surgeon, who think it's overkill to remove a healthy breast. In that situation, a change of doctor is needed.

What you might want to do is look on-line to see if your particular insurance company has any documentation that explains what they cover. Or google your insurance company and the words "refuse to pay for prophylactic mastectomy" and see if anything come up. You can even do a search on this site to see if any members here have had BMXs paid for by your insurance company.

bcincolorado

Agree--most surgeons do not want to remove healthy tissue even if it is for your own piece of mind. Insurance probably will not cover that either. I did just my left side where my tumor was. I did have the option with my insurance to reduce and lilt the right side to match. I personally chose not to do it but my insurance would have covered it if I wanted I wanted it done. Double check all your options and pick what is best for you.

Salamandra

That's very interesting. It's the first time (but I'm sure not the last) that I've heard of neoadjuvant tamoxifen therapy as a way to delay surgery. I know they've been using it certain other cases with promising results. Who knows, maybe it will shrink it.

FWIW, I think it's a good idea to give the option of lumpectomy plus radiation a fair consideration if the doctor says it's a possibility. A lot of us when we are first diagnosed jump straight to mastectomy because it seems like the most drastic/effective response. But medically that's not always the case. There are lots of good reasons to opt for mastectomy too, especially if future health insurance is up in the air and you have to do what feels right for you.

toria1212

cm2020,

I'm so glad you had a good appointment. I told the Dr "if" after surgery, pathology finds more C, I definitely want a BMX. She was so understanding, and agrees that the decision is a personal one.

I had a reduction in right breast(where the IDC was found) and a lift four years ago. It was a difficult recovery(I had a tummy tuck as well after five large babies, spanned over 17 years). It definitely was NOT a mastectomy and I did not have implants, BUT my little breasts were definitely traumatized and they healed slowly and it was painful and sore. I hope you get insurance provision and positive answers regarding your choices. And I'm glad you are meeting with your oncologist-I hope the information you receive reassures you and your path forward.

The sun is shining here(NOT typical lol) so I am relishing in the small things-cleaning windows, baking for my kids. I can get sooo wrapped up in my anxiety that it grips me. En route to my appointment yesterday, I was a mess. I was in a very dark place and my poor fiance received the wrath.

Sending healing (((hugs))) and positive thoughts your way....

cm2020

Thank you guys for the additional info on mastectomies in the non-affected breast. My surgeon is willing to do it, which is comforting. I am keeping an open mind and considering things that I hadn't considered before when making this decision. Hopefully if the MRI is clear I will have some time to think things through more and see what is happening with the pandemic. I will also have more conversations with my surgeon about it before making a final decision. I do want a bilateral mastectomy...that is absolutely my first choice. But, it may not be the best choice right now. Ugh, so much to think about! All of the input from you helps me so much and makes me think of things that I hadn't considered. Thank you.

cm2020

toria1212

I'm glad your surgeon was supportive and helpful. I actually really like the way you are handling it with going for the BMX if more cancer is found in the pathology report. I hadn't thought of that but need to talk to my dr about that option if that happens with me.

Like you, I have had some dark times. I'm sorry you are also struggling at times. I think it has to be natural, but it doesn't make it easier.

What is your next step (if you don't mind me asking)?

Lots of hugs and love....we will get through this! One tiny step at a time, but we will do it.