Like I need this at this point in time.
January 28, 2017 3:18 PM   Subscribe

I was just diagnosed with INVASIVE DUCTAL CARCINOMA, GRADE 1, (strait copy/paste from the report.

I am trying to avoid Dr. Google at the moment, so any experience or story would be great.

What can I expect in the short term. I don't even want to think of long term.

What would the genetics team be testing for (I gathered from the NP that talked to me Friday that they wanted to see me in genetics because of my ago (41).

I know this all falls into ask your doctor territory, but I don't know when I'll see the doctor (though it seems it will be pretty quickly). I'm extremely anxious and being in a sort of limbo is driving me crazy.
posted by kathrynm to Health & Fitness (14 answers total) 1 user marked this as a favorite
This is highly treatable. It's what Mrs W. had 12 years ago and she's fine. Lumpectomy and radiation, no chemo. Genetic testing is probably looking for the BRCA mutation. Memail me if you want more info.

and breatheā€¦
posted by Johnny Wallflower at 3:38 PM on January 28, 2017 [5 favorites]

As to the lumpectomy, the recovery is really very easy because there aren't any muscles in breast tissue. In my case (DCIS - essentially "cancer 0") they removed five millimeters of tissue. I have necklaces wider than that! Make sure that the incision will be nowhere near your bra band and/or straps, though.

Radiation doesn't seem like a big whoop, but it's kind of sneaky. I didn't experience any tiredness (although many women do) but it really did a number on my fair skin. Use Aquaphor (or whatever the radiation techs and doctors recommend) faithfully, whether you think you need it or not.
posted by DrGail at 4:03 PM on January 28, 2017 [1 favorite]

Michele in California is mistaken -- stage refers to spread throughout the body whereas grade refers to how locally aggressive the individual cancer cells are (that's why grade can be determined from a biopsy of your primary tumor but staging requires, in general, imaging of other parts of your body).

I 100% support your avoidance of Dr. Google, but these links from may be helpful for understanding grade vs. stage.
posted by telegraph at 4:19 PM on January 28, 2017 [4 favorites]

Yep, they're going to be looking at your BRCA status, and this is essential to determining the best course of treatment for you. If your insurance company balks, fight it.

Knowing your BRCA status is also important for the other females in your family -- your daughters, your sisters, etc. If you are BRCA +, they will need to consider this with respect to their own potential for cancers like breast, ovarian, etc. You don't need to think too far down this line at this point because you don't know your status, but FYI this is what was going on with Angelina Jolie.
posted by BlahLaLa at 4:35 PM on January 28, 2017 [2 favorites]

Grade 1 is still good - it means the cancer is slow growing. There are 3 grades, and 1 is the "best." That's good news for you.

I was diagnosed with aggressive (grade 3!) Stage IA IDC almost two years ago, at age 38. My life is completely normal now. I am healthy. My hair has grown out so that it looks like a normal person's hair. I had a year of treatment (lumpectomy, chemo, radiation, and 9 more months of infusions of a drug called Herceptin to treat my specific kind of cancer.) It was no fun, don't get me wrong, but the prognosis for early stage breast cancer really is very good and is getting better all the time. I know it's nigh on impossible to be reassured by that right now, though. It's a fucking terrifying time. But it will get easier, I promise you. The uncertainty and chaos at the beginning is really really awful. My mental state got much better once I knew the plan and was actually in the midst of treatment.

They want you to see genetics because you will want to know your BRCA status - it can impact how likely you are to face future diagnoses of breast or ovarian cancer. If you're negative, you're less likely to have to deal with this again somewhere down the line. If you're positive, a prophylactic double mastectomy might be a good idea.

You are so, so likely to come out of this okay. My cancer, even though I'm HER2+, which means more aggressive, has only a 1.3% recurrence rate for women treated with the drugs they gave me. I have 98.7% tattooed backward on my rib cage so I see a daily reminder of how likely I am to be okay.

Please feel free to memail me any time for any reason. It's the hardest thing I have ever gone through, no contest, and it changed me forever. Even the people who love us the most can't understand it like others who have heard the words "it's cancer" about their own bodies. I found a great community of women at who all started chemo at the same time as me; we are all still in touch via a private facebook group and they are a lifeline even now. I know that feeling of not wanting to google anything right now, but that site is wonderful when you're ready. Take care. You're going to get through it!
posted by something something at 4:41 PM on January 28, 2017 [18 favorites]

I also asked a question here about the diagnosis right after I found out. The answers were very helpful to me and they might be to you, too.
posted by something something at 4:51 PM on January 28, 2017 [3 favorites]

I was diagnosed with IDC grade 1, hormone receptor positive (also good), in '09.

Cancer is a fucking drag. There was every indication that this would not be a horrorshow (and it wasn't), but the uncertainty, the not knowing, sucks a big dick.

I was almost simultaneously diagnosed with moderate ulcerative colitis, which you may not even have heard of. It's related to Crohn's.

I tell you that for perspective, because the UC, even in a moderate form, has been FAR more disruptive to my life than cancer was. I'm unlikely to have a recurrence of cancer and I am quite frankly not worried about it at all.

I won't lie, though. Cancer changes you. Your relationship to the word "cancer" will never be the same. The indignities and the discomfort are a bitch. Your body will be seen and touched by more people in the next few months than saw or touched it in the preceding 10 years and they'll be seeing it as something to fix, not something to love or admire. But based on your preliminary results, I am optimistic that the worst part of your experience will be the fear and the uncertainty.

There's a fantastic book about the experience of breast cancer that's not about, you know, all the what to expect from your lumpectomy or any treatment stuff but really just about the emotional getting through it. I've given it to a number of people, including a male friend with anal cancer, because it's that good. And please feel free to memail me if you need to vent or hear a comforting word.
posted by janey47 at 6:14 PM on January 28, 2017 [3 favorites]

I had the same sort of cancer as you when I was 40, and had the whole show: lumpectomy, radiation, and chemo although the chemo was optional (my kids were little then--I was grabbing every statistical probability I could get). I'm 57 now. The treatment year wasn't pleasant, but life got back to normal really quickly. I'm now so past it that I have to think back to remember the actual dates, sort of, "Lemme see, I was working at X company and we'd finished the Y2K thing, so that puts it..."

I took three weeks off work for the surgery; I did the five weeks of radiation on my lunch hours, which sucked, but was doable. I worked through my first two rounds of chemo and then took the next six weeks off work. If I'd had the sick leave/insurance/financial ability to take more time off I probably would have, but I didn't. I'm not a superwoman by any stretch of the imagination. Feel free to memail me.
posted by angiep at 6:39 PM on January 28, 2017 [2 favorites]

Oh, hey. My mom just had that!

She had a routine mammogram this time last year which showed up some weirdness, so they did a biopsy and found the same thing: invasive ductal carcinoma. (Except hers was Grade 3, which means it was a speedy little fucker. Grade 1, which you have, is better.)

Our earliest questions were about hormone status and genetic testing...

Some kinds of breast cancer contain a protein called HER2, which responds to targeted hormone therapy. So if you have sufficient quantities of this protein you get another choice of treatment to go alongside chemo, radiation and surgery. Unfortunately Mom's cancer was "triple negative" which means it didn't have enough of the protein for hormone therapy to be an option. However, there is some variation between hospitals on how they determine whether or not a cancer is triple negative. It's worth asking what the cut-off line is at your hospital for this determination and whether your cancer is on the cusp.

My mom wasn't eligible for the BRCA ("Breck-uh") test to see if she had that Angeline Jolie gene, because she was older than you and there wasn't enough of a history of breast cancer in her family. (Under 40s with breast cancer get the test where I live as a matter of course. For women over 40 it's not automatic and family medical history is considered first.) If the test is available to you, then definitely get it. Knowing the score there will help you to make good choices about treatment further down the line and can help your family members make informed decisions about their own health.

I went with my mom to her first appointment after getting the report. First she saw a doc who answered her questions about HER2 & BRCA and gave her a timeline for her treatment. Then she saw a nurse who gave her some practical advice about how to look after herself from the surgery and provided a fuckton of pamphlets and phone numbers for support networks and advice on the kinds of financial assistance that might be available. (We're in the UK, so I can't speak to medical bills or health insurance. This was about stuff like getting parking fees at the hospital validated and free prescriptions.)

I made extensive notes with pen and paper, but I also recorded the whole appointment on my phone as a voice memo and I am SO GLAD I DID. You are not listening properly when you're in the room, there's too much going on emotionally. There were half a dozen instances where my mom, my dad and I disagreed on the interpretation of what the doctor and nurse had said after the appointment and having a recording which we could play back afterwards stopped us from getting needlessly stressed out and muddled. If you're allowed to do this where you are, I STRONGLY recommend it.

My mom's surgery was called a lumpectomy (which is such a silly, undignified fucking name). She was totally ready to have a mastectomy if called for, but her doctors said that unless BRCA is in play it's better to leave some healthy tissue behind. That way, if the cancer recurs, removing it is just a matter of removing some more non-essential tissue, rather than something system critical.

Mom's surgery removed the tumour and a couple of lymph nodes too. The lymphatic system is one of the ways breast cancers like to travel to other parts of the body, so it's standard practice to check the nodes very carefully. One of the removed nodes was fine, the other was a bit iffy, so they went in pretty hard after that with both chemo and radiation just to clean house. Some women just get the surgery and need no further treatment, but in this case the node left a question mark over the whole thing, so further treatment was advisable.

She was given exercises to do at home post-surgery and wasn't supposed to drive or do heavy lifting until she had her full range of movement back. Because she was down a couple of lymph nodes, they recommended that she not have any needles in the arm on that side anymore, as she was at a greater risk of lymphoedema than people with a full set of nodes. (Her reaction: it's okay, I'll get a tattoo on that arm to remind me not to put needles in it. *facepalm*)

If you're having the surgery, now is the time to reach out to friends, family and neighbours and give them concrete things they can do to help you. People want to help, but they get scared off by the C word and not knowing the right thing to do/say. Here are some practical things you can ask for that will help the people around you to feel useful and not do that bullshit thing where they get nervous and keep their distance just when you need them most...

"I'm going to have limited movement in my arm for a while after the surgery. You wanna come over the weekend before and do a cookery project with me? I'm going to freeze a bunch of home cooked meals that I can just heat and eat one-handed."

"Do you know anybody with a spare chest freezer that I could borrow for a couple of months? I'm batch cooking a ton of stuff next weekend to eat while I recover and I need somewhere to store it."

"Hey, I'm not supposed to carry heavy things until my arm's back to normal, but I really need some retail therapy. Can we plan a shopping trip where you hold all the bags?"

"I'm not going to be able to drive for a while after the surgery. I could let you borrow my car while I'm out of commission if you're free to ferry me to appointments!"

"I'm not supposed to carry my bag on my right/left shoulder, but it's just muscle memory at this point. Can you call me out on it if you see me doing that? It'd be really helpful."

This is also the time to talk to HR and see what the protocol is at work. My mom's workplace were pretty great and let her reduce her hours as needed, work from home and take time out. Hopefully yours will be too. The biggest frustration from their perspective was not knowing whether to get a medium term replacement the way they would have done to cover, say, a maternity leave or a day-to-day temp, because until she had actually undergone each stage of the treatment, she didn't know how much energy she'd have available for work. It was a bit stressful for her manager and knowing that she was stressed meant my mom got a bit stressed over it too, but honestly fuck it. Your manager will just have to cope with a little uncertainty, they get paid to handle shit like this. Your focus needs to be you and your own recovery.

Next came chemo. If you need this you'll be given the dates and location(s) well in advance. I say location(s) because my mom's course of chemo involved two different types of drugs, so the less powerful ones were given at one hospital, whereas the serious shit from her last two appointments were only available at a different location. All the potential venues were about equidistant from where we lived, so this wasn't a big deal. Our family members took turns taking time off work to go with her to appointments. I went for the last appointment on the less-intense drugs. Try to have somebody with you, because the nurses are normally looking after multiple patients at a time and it's nice to have somebody who is specifically at your beck and call for things like distracting you with chatter and tweaking blankets. Chemo makes you feel really cold while the drugs are being injected, so blankets are important. If you don't have anybody available to attend your appointments with you, then you should take some podcasts or an audible subscription or something. It's super boring having chemo, since the patient's role is basically just 'sit in a chair and feel cold until I say you can stop'. Some people also feel nauseous, but my mom mostly dodged that side effect and never got super-barfy. A small, but important victory. She said that the first dose actually made her feel vaguely stoned.

In between appointments she felt really tired, so you might want to consider having spare house keys cut for potential visitors so you don't need to get up and let them in. Or if you have a friend/neighbour/family member with a spare room you might want to consider staying there while you get treatment, but my mom's attitude was that cancer was shitty enough without giving up her apartment, so we all took turns going to her there instead. Here again boredom is a factor, but some of the stuff you might usually enjoy like video games or crosswords or whatever may involve too much concentration. Fill up your Tivo with multiple seasons of your favourite trashy, intellectually undemanding TV shows and binge watch the fuck out of them secure in the knowledge that nobody's going to judge you for it right now.

Even if you don't get nausea, chemo can alter your sense of taste. Building meals around acidic ingredients like tomato paste and vinegar can make food taste more 'normal' because those are less immune to the weird taste-shifting. You may also find you get weird food cravings or dramatic changes in appetite. We learned to hurry the fuck into the kitchen the second my mom said she was in the mood to eat something specific so that we could get it into her before the craving passed and she went back to being "not very hungry, sorry." Chemo can also dry your mouth out, but she got a medical mouthwash that mostly fixed that.

In between appointments, she had steroid injections at home. The first set were delivered by a nurse who taught her how to do it as part of a home visit and afterwards she did them herself. The nurse was clearly overworked and didn't take as much time as my mom would have liked over the training. She was annoyed about this afterwards, but didn't want to make a fuss at the time. Don't be afraid to advocate for yourself. If somebody is rushing you, tell them to sit the fuck down and go through things slowly. You are important, dammit! The steroids thing was my mom's one real criticism of how the NHS handled her case.

Chemo makes you immunocompromised, meaning that your defences are down and you're a sitting target for any cold or other virus that happens to be in your vicinity. Make sure your friends and family know what this will mean. You may want to avoid small children while you're in treatment. They're sweet, but they're also walking germ factories. Drum into older kids that they have to get extra serious about blowing their noses and washing their hands. Tell people to avoid you if they're coming down with a cold. Ask the people in your life to get a seasonal flu jab if that's available in your area as a favour to you, since you won't be able to get one yourself. Coming down with a cold while on chemo is fucking miserable and will also delay completion of your treatment because you'll have to reschedule your appointments.

The nice thing about having chemo now is that drawn-on eyebrows are still on trend, so you'll look more natural than if you'd lost them in a different era. Mom also said it was nice to wear summer dresses and not have to worry about shaving her legs. So if you have any confidence-boosting outfits where that is a factor get them out of storage! She got a wig that was a fairly decent match for her own hair and tried it out for a while when her own hair was still in place. She answered the door wearing it and my first thought was "Oh, she got a haircut" not "Oh, she's wearing a wig." Ultimately, though she decided she just wasn't a wig person and went with a combo of scarves, hats and a no-hair-don't-care attitude. She said it was important to have a variety of fabrics, colours and styles and that slippery material like silk was useless, because there's no hair to grip, so it just falls off. She had a blue flannel-ish beanie for around the house that was super comfy and a really pretty cloche for when she was out and about. You just need to experiment until you find something you like that suits your face shape. We had a "scarf party" where my sister and I rounded up all our scarves and headgear then took them around for her to try on so she could pick out her favourites to borrow while she was in treatment.

After the chemo came radiation. This didn't wipe her out like chemo, but it involved travel to yet another hospital and she also didn't feel emotionally ready to go back to work yet, so she waited until she was done with treatment and just did a few hours here and there via VPN between radiotherapy appointments until she was back into the swing of things. She then went back part time and made up the rest of her hours by working from home since she'd proved she could still be effective remotely.

And that brings us up to the present day. We're a year on and she's completed treatment and is in remission. We've made a collective determination as a family that there's a statute of limitations on using "But I've got cancer..." as an excuse for criminally smelly farts, not getting one's round in and getting to choose the radio station. Her appetite's back to normal. She's back at work. She's returned all our scarves and her hair is Mia Farrow length and has come back a lot softer and shinier than it was before. (Although this victory was tempered by the fact that it didn't start growing back evenly, so for a while there we all got a glimpse of an alternate universe where she was a dude with male pattern baldness.) She's doing okay.

So will you.
posted by the latin mouse at 12:38 PM on January 29, 2017 [10 favorites]

I was diagnosed with stage 2a grade 3 IDC about a year and a half ago at age 39. Cancer treatment is kind of like a roller coaster ride: you don't pick the route, you're not in control of the vehicle during the ride, and your job is really just to hang on until the end.

I had chemo, a lumpectomy, and radiation. The surgery was by far the easiest part. I got through it all by just showing up and hanging on. Hell, I had a huge traumatic event occur in the middle of treatment, and I still got through it. So it is something you can get through.

Genetic testing may actually look for several known genetic markers for breast cancer and possibly ovarian cancer in addition to BRCA.

I second the recommendation for It's a medically reviewed site with excellent, understandable information and the discussion boards are so so helpful and supportive.
posted by jeoc at 8:15 PM on January 29, 2017 [2 favorites]

Get a notebook and two pens (one is a backup) and bring them to every appointment. Also, write down questions when they occur to you because you will forget everything when you go to an appointment.

Find another doctor and get a second opinion. They're all used to reviewing each other's stuff and providing dispassionate advice: no one considers it disloyalty or offensive. Hell, they will encourage you to do so!

You may read, but avoid other sites: lots of people share second- or third-hand tales of misery, which will only freak you out. Their story is not yours; your story has only begun.

The next few days/weeks will feel agonizingly slow, because of the uncertainty. Getting educated from good sources can help counter-balance this, so ask your docs & nurses as many questions as come to mind. Cry if it helps release tension. Get your SO or a friend or a family member on board, and have them be the note-taker. (If you can't have one person come every time, the notebook is your continuity, and your companion is just for support. This is also a good system!)

Once your timeline forms up, reach out to friends who have been treated and have one of them organize meals & help during your post-surgical recovery. (Use the lotsahelpinghands web site to set up a schedule for people to sign up to help.)

There may also be a resource group in your area; for example, here in Rhode Island we have the Gloria Gemma Foundation who offers support groups, classes, activities for families, walking groups, and tons of other stuff, all for free.

You're going to get through it, despite feeling FTFO right now. :7)
posted by wenestvedt at 7:14 AM on January 30, 2017

I just want to say Thank You to everyone. I spent the weekend binge watching the Simpsons. It felt good to laugh and not think about what is going on.
posted by kathrynm at 8:16 AM on January 30, 2017

Hey, one more tiny thing I'll add, just in case your doc wants you to get BRCA tested but your insurance company is fighting it: one reason they do this is because there isn't enough of an incidence of breast cancer in your family. But push back if your older (and/or dead) relatives were living in situations where they wouldn't have been diagnosed. For example: don't know status of my female ancestors because they perished in the Holocaust; older relatives were living in Country X, where there is no access to First World medical treatment. Stuff like that.
posted by BlahLaLa at 10:31 AM on January 30, 2017

One other important thing about BRCA testing - because of my age and because my father died of melanoma, my doctor wanted a full genetic panel, not just for the BRCA gene. The cost for this is around $6000, and most insurance companies will not cover it. However, the lab (Myriad Genetics) directly appeals denials to insurance companies to try to get them to pay, and if insurance won't pay even after appeal, they write off the vast majority of the cost and bill the patient only $375. Nobody told me about this weird process, and I had a few panicked days where I thought I was going to be responsible for an additional out of pocket $6000 expense.

Also, one small correction to the latin mouse's post above - HER2 status is not related to hormones. If your cancer is HER2 positive, it means the cells have an abundance of receptors for something called a human epidural growth factor, which makes the cancer grow and spread more quickly. HER2+ cancer does respond well to targeted therapies (drugs called Herceptin, Perjeta, and Kadcyla), but these are not hormonal drugs.

Hormonal treatments are given in response to cancers which are ER (estrogen receptor) and/or PR (progesterone receptor) positive. You should get a description of your cancer that takes all three of these into account - mine was ER+/PR-/HER2+, for example. This means I was treated with both Herceptin, for the HER2 positivity, and tamoxifen, for the ER positivity, in addition to chemo.
posted by something something at 11:22 AM on January 30, 2017 [2 favorites]

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