DCIS newly diagnosed with High Grade

marijen

I have read somewhere here that it is better to wait and radiation does have an affect. Try the radiation forum....

There is also a reduction + lumpectomy thread under Surgery, before during and after. Good luck.

cubbysmom

On 9/29 I had a lumpectomy for DCIS. My tumor was Grade 3. I go tomorrow for my radiation simulation and tattoos. I'm told I will need the full course of radiation of 6 1/2 to 7 weeks. Trying to read up on everything so I am prepared. I am sticking with this web site. If you go on the internet in general, it's pretty scary out there. I looked at the radiation thread and got all the creams, etc trying to prep for this. . Once I am done with radiation I will start 5 years of Arimidex. They are going to watch me closely as I am at risk for bone damage.

I'm scared but ready to tackle this

I have plans on going to Disney with my grandkids on Dec 28 and I will let nothing stop that. They are the world to me.

ORknitter

Cubby, Your path sounds a lot like mine. I was terrified of the radiation since I have extremely sensitive skin. I got through without any problems other than a raw/red spot where my bra rubbed from having to sit in an ER for 7-1/2 hours for DH. (Should have listened to daughter & taken the blasted thing off!). I have been on exestamestane for 2 months and have very few SE. So far this has been really an easy thing to handle physically. I am also being watched for bone damage and had a scan done before starting an AI that showed osteopenia, my MO said to take extra calcium so I am doing that faithfully.

Disney sounds like a great plan.

cubbysmom

Thank you for responding! I am extremely pale (you would not know it by my face or arms) so they are already concerned they may have to break up my treatments because of my skin. When I look at your diagnosis, it's almost the same as mine! I don't know what ER+/PR+ is but other than mine is on the right side, we have the same diagnosis.

ORknitter

Cubby, ER and PR are hormone receptors, they guide any hormone therapy.

monarch17

Hi Marijen -

I never thought I would be comfortable saying, "Yes, I have extra fat..."

The PS did say I was too thin to have reconstruction with back fat, so I THINK that is a compliment?

But I think you are correct that they can use excess fat as a filler depending on what is needed after lumpectomy. And I am sure before doing anything the full effects of the radiation needs to run it's course. Not sure how long after surgery they start?

Sorry to hear about the large range of lymph node sampling - I hope it is just 5. How do they know when to stop of keep sampling? Are they checking each one as a frozen sample while you are in surgery? I know they do that for some surgeries, but not too familiar with the actual dissection and removal of lymph nodes. That would be a heck of a lot of tissue to process for 60 lymph nodes if they are doing it at the same time as surgery? I will have to research that.

My pre-op is also on Monday (tomorrow), we will have to compare notes. Surgery Friday, hoping I can go home and not stay the night. Yes, I am also in a mad rush to get things done and cleaned up, especially the physical tasks. Starting ripping old plants out of the garden and digging new holes, just in case I started to feel better I can just gently place plants in the ground and cover them with soil. Sounds nutty but very therapeutic. Succulents especially are the bomb. Take a cutting, leave it out on the table for a few days, then stick in the ground and POOF! Instant green thumb! There has to be some sort of symbolism I could quote about plants and fighting cancer - but I will wait until I am on pain pills and try to come up with something really good!

One bit of good news, the right side core biopsy came back benign, nothing (whew!). The DCIS is on the left but they felt better safe than sorry and do a pre-cautionary biopsy of the other side. Can you believe the radiologist that did the biopsy actually called me on a Saturday to tell me? I love her!

Next steps, hope the BRCA is negative,

Hope the margins of the tumor are clear,

Hope the sentinel lymph nodes are negative.

H.O.P.E = Have Only Positive Expectations

Just made that one up on the spot. Should have been a poet.

marijen

Hi Monarch,

Surgeon will take out nodes in Axillary area. The volume will include 5 - 60 nodes and fat - 5 marshmallows worth. It depends on the person how many that will be. They can't all be seen because of the fat. I have a very positive big one so it wouldn't do not to take most. Except he leaves the ones below the vein. That is how he avoids lymphedema. When I understand better I will explain it. Pathology study takes a week. Silly me I did think he would only take the swollen one and maybe a few more. It is not sampling. I'm becoming fed up already as I read how many think they're done only for dreaded reoccurence. Go to Femara forum I posted a link to very informative website concerning hormonal treatment and other things.I like your definition of Hope. Fear is false evidence appearing real FYI. : ). I used to garden, it's on hold but will remember the succulent thing. I'm sure your radiologist appreaciates an informed patient.

monarch17

I found this pretty extensive and helpful, lot of lymph node info and up to date:

http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-surgery

May help add to any questions you can ask. Good luck tomorrow!

marijen

Well that's perfect, everything I've come to understand. Thx. I read that radiation results in 70% less chance of reoccurence. Is this what you've found? Have you opted out of chemo

monarch17

That's the radiation statistic I've got too. They never suggested chemo. Next step is wait for the pathology of the lump and node biopsy before finalizing any treatment anyway. Docs say I can go home the same day, surgery will take about 2 hours. Be at least 5-7 days to get pathology reports back since they are doing much more involved sections of the tumor. If margins are not clear or nodes positive, then probable re-excision (crap!). Hormone receptor should be re-done at the time too (esp in my case since I am ER Negative, just in case there was a mistake and Tamoxifen could help me..)

Nurse coordinator said to get a good tight bra and take out the underwire. Make sure the cup is full so you don't move around, and the areas under the armpit are low so as not to rub on the incision site from the LN removal. Closure in front so you don't have to put it on over your head.

Wonder how we get all our radiation treatments in during the holidays? Guess I will figure that out later, don't even know where I am supposed to go yet anyway.

Good news today, I am BRCA Negative (whew)!

marijen

Hi Monarch, good to know about a tight bra... but I hate anything tight. I don't put them over my head? I hook and turn to the back. Darn I threw a good one away because it had no wire. My BS gets less than 20% return for re excision as you call it. I'm sort of glad radiation over the holidays - extra days off I'm hoping. And at first I thought winter would be too cold but better for sunburned, hot skin I guess. More clothes though.

Didn't realize you are ER-. And PR + ? HER?

Passed my preop today, and that's the good news.

Annette47

In terms of a post surgical bra, I found a front closing tight sports bra to be the most comfortable option. Even if you don’t normally like things tight, the compression does feel good post-surgery.

marijen

Hi Annette47. So we are supposed to wear a bra from day one? All they told me to do is wear comfortable clothes to the hospital, no direction on bras at all. What do they think? We all have just the right bra in our drawer? I was not going to wear one at all as they will pin the drain to my clothes they said and then I won't have to change when I get home until the next morning. I just wear a T-shirt around the house and to sleep. With a sweater or robe if I'm cold. Surgery tomorrow. I do have a leisure bra on order that clips in the front, should arrive in a few days. They also told me no restrictions as if I won't have any trouble getting dressed and undressed.... I'm not a very good lefty and no one to help...

Annette47

They gave me a bra to wear at first - I woke up with it on, LOL. Maybe they'll do the same for you? I know other people have been told what to bring.

I didn’t have any drains, though .... I don’t know if that would make a difference.

marijen

Thanks Annette - well I'll try to remember to report back after tomorrow. That's funny! Surprise, you have a new bra!

april485

I did not have drains for either of my lumpectomies but I have heard that some do. Not sure why that is? I was told to buy a sports bra (tight one) and it did feel better. I am a B cup (C cup depending on the bra) for the most part so not large.

marijen

Unbelievable, my breast center called this morning and changed the time, so I took the opportunity to ask about bra or no bra and what does the drain hook to and guess what? She doesn't know anything about that. Then a half hour later the oncology office calls to "check me in" I suppose and gives the old time in a voice message. Then three hours later the oncology office calls again and doesn't leave a message so I call back and of course whoever is answering the phone doesn't have a clue who might have called and puts me on hold for twenty minutes "because her computer wasn't working". Then she goes on to once again give me the wrong check-in time and the same message I was left at three hours prior. Now guess what, I am aggravated. So I ask where is the doctor's nurse? Oh she's off for another week. I suppose this all doesn't matter since my surgery will be in the hospital or outpatient clinic, that was unconfimed as well, and not in the oncology office. Is this a sign of the times? I can feel my blood pressure has risen for what? I knew all this before anyone called.

Ellelou

Marijen--Sorry about your communication difficulties. I can address drains and bras a bit. I had a mastectomy so I knew I would have drains. I do not know about a lumpectomy. If you have no drains then be happy! if you do, obviously it is too late to run out and buy a post-surgical camisole but that is what I did, They have pockets for the drains to rest in and so they do not have to be pinned. Mine was a zip up the front one by Amoena (online).

Okay, the hospital I was in had some nice ladies who check on BC patients and they brought me a bag of items--so sweet. One was a flannel drain holder. It was like a double pocket that tied around my waist and went under my shirt. Maybe you have an undershirt or a camisole that might work or you can rig up tonight.

I had a very wide ace bandage wrapped around the dressing on my mastectomy side that wrapped all the way around my chest so I didn't really need a bra since it gave support to my remaining breast. Later, I liked the cotton front closing bra and my Amoena camisole which is great (the drain holders are velcro and removable). I hope that helps a bit. Best of luck tomorrow.

Ellen

marijen

Straight from the surgeon's mouth, imaging is not that accurate with size of lump or DCIS/IDC area. Only 60% get clean margins the first time around. Isn't that nice? It only took a week and a half to get that answer AND not the same answer as the breast center nurse gave. Well too late now... I need it out.... I hope I'm one of the 60%. Hopefully that is an underestimate not to get my hopes up.

JerseyRenee01

Marijen:

Sorry you are going through unnecessary stress the night before your surgery!

I just read what your surgeon said on the 60%! Ugh! My process is just beginning!

I have DCIS as well. Tomorrow I see Oncologist & Genetic Counselor then BS Thursday. I have no idea what my choice is & I wont make my choice until gene test is done & MRI.

I will be thinking of you tomorrow & pray all goes well & you do get clean margins! {{hugs}}

I hope you can get a good night sleep. Keep us posted when you are up to it.

marijen

Hi JerseyRenee, thank you for your good wishes. The surgeon better not ask if I got all my questions answered because he will get an earful. Not really, I won't want to start anything before he cuts me : )

Tomorrow at this time I should be home. I'm sure he will tell me something even though the pathology report takes a week. He's supposed to be very good.... I'm counting on that.

JerseyRenee01

Marijen:

yes not a good idea with the earful 😱

Ugh more waiting on tests!!!!! So stressful!

Take deep breaths & remember this time tomorrow it will be over with!

monarch17

I agree. You want the surgeon to like you, want to help you, cure you.

Sorry to hear they are giving you the runaround, but it is the surgeon that matters and not silly clueless people that answer the phone.

60% is good odds, better than a coin flip. As I am thinking about it, IF you have to go back and they excise some more, then they will have more of a location anyway. Do they put clips or wires in when they are there I wonder? Just in case? Then if they get it all and it's clear - great. If not they might recommend mastectomy. But this will be BEFORE radiation begins, so you will at least have a chance for a good reconstruction.

Not the greatest bright side, but you gotta make lemonade out of lemons..even if it's a little sour. You are alive and the prognosis is still good.

My positive thoughts are certainly with you tomorrow. Best of luck and let us know how you are doing.

PattyMeg

Sorry to hear you are going through such a tough time. I'm recently diagnosed as well and my surgery is scheduled for next Friday. I am having a lumpectomy with a reduction and was told I would have two drains. One will be in for one week and the other for two weeks. I don't know if they are because of the lumpectomy or the reconstruction. The whole process of all of these appointments can be overwhelming. I wish you all of the best.

marijen

Only tough time was getting correct answers to questions. Left a post at Oct surgeries.

monarch17

Marijen - hope you are doing ok. My thoughts are with you!

marijen

Hi, thanks! Just fell asleep for maybe 30 min. I have pain but it feels normal, nothing strange going on. So far doing very well. I think my surgery was two hours because of the axillary dissection and maybe he was being very careful because of my lymphedema fear. Woke up with a nice cotton bra on, drain safety pinned to that. Have to keep it on 48 hours, but ok to shower in the morning. So far 30 cc drain before leaving hospital - about 1 hour. Next four hours 60 cc. I am able to dress and undress, read and post in bed but don't want to do too much typing. My son had a nice soft sling so it's keeping me reminded not to do too much. The nurses were all wonderful, didn't talk to the doc. Was out before operating room. There was no need. Before he started I heard him say "piece of cake" after checking where he was supposed to cut for lumpectomy. Posted more earlier at Surgeries Oct 2015.

monarch17

Marijen - Good to hear you are doing so well! Gives me hope for my surgery later today!

I will also check in at the Surgeries site.