What to expect after DCIS dxd

Helenhsm

Hi I am Helen, I live in Silicon Valley with my husband of 18 years and 3 kids, whom I home school.

I just found out I have DCIS. I had a mammogram and a biopsy. The Dr. said the spot was tiny - like the head of a pin. I have an appoinment to see a surgeon on Tuesday.

I had the biopsy on Monday and have a large bruise, the size of a baseball that I have been icing all week. Now there is thickness inside my breast, which I was told to expect. It aches off and on.

So, I figure I am going to have a lumpectomy, but I'm nervous because I've had such a bad reaction to the biopsy. I want them to leave my boob alone! Anyway I am hoping to have this over with soon, but I am seeing it may not be so simple. It sounds like people recover fairly easily to the lumpectomy, but the thought of radiation scares me.

I have Chronic Fatigue/Firbromyalgia and I just don't think my body is going to handle all this too well. Already I have to rest 3-4 hours a day.

What do they actually do when they do a lumpectomy? How do you feel afterwards? What are the pros and cons of radiation?

Any thoughts will be most welcome.

Thank you!

~ Helen

ijl

Hi Helen,

I also live in Sillicon Valley and have been diagnosed with DCIS. I stronlgy suggest that you ask for breast MRI to check the rest of the breast and the other breast as well. That will help you in planning your surgery.

Helenhsm

Hi Inna, thank you for your reply. I have been reading around here and I saw that recommendation, so I am going to do that. Since you are in my area, maybe we can talk about our experiences here over PM.

Can you are anyone give me details about what the lumpectomy is like? Also what is it like to get radiation?

ijl

Hi Helen,

I send you PM message

Fireweed

I had a hematoma like the one you describe after the biopsy. The lumpectomy actually caused me less pain than the biopsy. Try some ice to the site for 12 hours after surgery to reduce the swelling, and good luck!

Anonymous

Helen---my lumpectomy was day surgery--in at 6:30, home by 2:00. I had very little pain, was wrapped in a snug chest binder for two days, then allowed to remove it and shower with just the steri strips. Was back to normal activities in less than a week.

Jenny812

My lumpectomy was a breeze. I agree that my MRI biopsy was more difficult.
Jenny J.

Helenhsm

Ahh ok good, sounds like the Lumpectomy won't be as bad. Now I'm nervous about radiation. I don't want to borrow trouble but I do want to know what to expcet. Kind of hard to balance that.

Thank you Susan, AWB and Jenny.

ijl

Hi Helen,

If you have a small amount of DCIS and it's low grade and you get good clear margins, you might not need radiation. But first you need to get MRI and lumpectomy so you can get a complete picture of what is going on.
BTW, I sent you PM message . I am not sure if you know how to access it, I did not when I first started here.
YOu just go to "My home" and it will take you there. I am also attending a very good DCIS support group and we have a couple of women who whent through the radiation and can share their experience.

CaliforniaKate

Helen, I'm a real coward. Had never been in the hospital except to have my three kids. The lumpectomy was nothing to be afraid of. I was sore afterwards, but no big deal. Radiation wasn't bad either. I burnt a little at the end, but was given cream for it. And the last few weeks I was tired. It really wasn't a big deal. Kate

Helenhsm

Inna, I got your PM and replied, did you get mine? I sure hope you are right about the radiation. I am freaking out a bit today.

CALkate, thanks so much for your input. Since I already have Chronic Fatigue/Fibromyalgia I am concerned that I will have a real set back in my health. I'm glad to hear it wasn't a big deal for you. Perhaps you were healthy in the first place and who knows I may be able to skip the rads?

Cydney

Helen, you are totally right about expectations being different for everyone. I'm a firm believer that we get what we expect. If we go into the procedures expecting it to be awful, it will be. If we go expecting to do our best and get improved health and a longer life - that will happen too. I don't know too many people that WANT to have surgery and radiation. But there are lots of people who go through the treatments and emerge healthier.

Lumpectomy was day surgery for me too. I was sore, but followed instructions and began to heal. The biggest thing was giving myself time to rest and re-cooperate for a few days afterwards. My husband was a great help.

Radiation was more mentally scary than physically trying. The machine is big and it moves around you and makes noise. BUT there is no pain. There are odd tweaks and twitches along the way. Going day after day is tedious. I'm large breasted and like most large breasted women, I had skin burns at the end and some rashes which my doctor said were yeast. Both were cleared up with cremes.

I'm two weeks post rad and feeling great. I really value "normal" now. I'm happier than I was before. So, while the journey was scary, long, and inconvenient, I'm really grateful for the outcome - which is to be cancer free.

Cyd

JulieLA

I don't know that I agree with that. I have a vivid imagination, fueled by having reviewed thousands of medical reports on all kinds of conditions, so I always expect the worse. The reality is never as bad as what I anticipate it to be (fortunately!).

MNSusan

If your area of DCIS is that small, they very well may have gotten it all during biopsy. That's what happened with me - my lumpectomy tissue showed no DCIS at all. Because it was small, I was able to forego radiation although that is still the standard of care for DCIS.

I had the same reaction with the biopsy and almost nothing with the lump. I actually slept on my stomach the same night.

Good luck to you!

Helenhsm

Hi all, thank you for your input. I just got back from my appointment with the surgeon. I will have an MRI and then schedule the surgery for sometime this month. I'm glad to hear many of you had no problems with the Lump. My breast is actually healing nicely now (from the biopsy).

My surgeon said the side affects and risks for radiation are small. I want to do some more research on this and read on the Rads thread.

I'm with Julie and the expectation thing, I don't believe we always get what we expect, thankfully. I don't believe we are that powerful. I do think our thoughts do have power and we need to watch what we think. I keep my thoughts positive by memorizing and reading bible verses, and of also by prayer.

Thanks for you comments Cyd, Julie and Susan.

~ Helen

ijl

I did not get your PM. But it looks like you got all the info. Based on my experience one suggestion I would add is to have your blood test before the surgery.
Other than this I agree with all the posters, the procedure is not bad at all.

melmedic06

hi helen- i am a little late with my reply but i wanted to add to the other replies that yes indeed- a lumpectomy is not that bad- i had my first one in october of 04 for a 0.9 cm ILC- i spent a few days on the couch and another few days taking it easy then was able to return to work-there were no complications from the surgery and i followed up with 6 weeks of radiation and started on arimidex- in august of 05 they found a very small amount of DCIS in my right breast so i had another lumpectomy- i was just like MNsusan and had healthy breast tissue on pathology- no DCIS at all- i did end up with a fairly large hematoma after this procedure as i pushed myself to heal and overdid it- but after two days of bed rest it started to resolve- so do what the doctors say!! i had another 6 weeks of radiation even though the tissue was benign basically because of the ILC and wanting to do everything i could to prevent a reoccurence-the radiation is not bad at all- you will find great information on that thread- and i continue on with the arimidex- it will be two years since my DCIS dx this august and all of my mammos have been negative along with my tumor markers so i continue to pray and be grateful for my blessings- good luck on your journey and please keep us informed on your progress-

kbean

I had surgery and 2 re-excisions since they didn't get clean margins. This is something you need to ask about beforehand since they really don't tell you much about it. Luckily they got clean margins after the 2nd re-excision or I would have had a 4th surgery (mastectomy). I have to tell you though the biopsy is the worst of it. I also had 6 weeks of radiation which is difficult mentally and it made me really tired! I have recovered since they finished in Dec 2006, but you will probably have rib/chest pain for up to a year or more after you finish radiation. I'm not trying to scare you, but you need to know what's coming up. You'll make it thru the breast cancer tunnel and pop out the other end just fine Big hugs to you!

ijl

Does the reexcision require wire placement ?
I just had my original lumpectomy and am waiting for a pathology report. There is a reasonable chance I would need reexcision, and I just realized that I never asked about the details of this procedure. I presume it's much faster one than the original excision.

Catherine

Hi Helen, I was diagnosed with DCIS four years ago and also had a lumpectomy. It went much better than I had anticipated. It was outpatient surgery and I had it on Friday. I was back to work the following Monday.

Depending on the size, you may not need radiation. My surgeon said that 5 mm is the usual cutoff. Mine was actually 6 mm but both the surgeon and the oncologist said they'd be inclined to skip the radiation. I didn't have it and things have been fine.

Catherine

Helenhsm

Thank you all for your replies. I helps to hear what others have been through.

I guess my DCIS is 1.9 cm so that is bigger than yours, Catherine - which is why radiation had been recommended.

Melmed sorry that you had to go through this 2x and yes counting my blessings helps me so much and also prayer and bible verses.

Kbean what actually happens with the re-excision? That must've been no fun. I hope the biopsy is the worst of it, but since I have Chronic Fatige/Fibromyalgia (CFS/Fibro) I think the surgery will be worse as they told me I will be at the hospital from 9:30am-7:00pm Eeek that is a long day. At this point I am schedule for the SNB, but that may change. Thanks for the hugs.

Catherine, I'm glad your DCIS was so small and you didn't have to have rads. Yay.

I wanted to mention that my surgery is schedule for July 24th. I'll keep you posted.

ijl

Hi Helen,

Good luck with your surgery. I know that you have some medical problems and you are worried about it. But remember that the breasts don't have many nerves at all and therefore it does not hurt much if any. Comparing to my C-sections it's nothing. I haven't taken any painkillers, not even Tylenol. And I am not one of those stoic women at all I take Motrin at the first sign of cramp .
Actually one mistake I made was to agree to take Vicadin in the post-op. Since I took it on the empty stomach (after a few crackers) , it made me rather sick . But other than that it was a breeze. So even if it will be not as easy for you as it was for me, it should not be too bad.
My good wishes are with you. One day you and I will be done with this

Helenhsm

Yes, this too shall pass. That is one of my favorite sayings. I'm just going to take it one day at a time and enjoy my life.

I have only told one sister about my situation, so I need to tell 2 others and my dad yet. I know my sisters fear the big "C" so I hate to break the news to them. But I do have a great prognosis so it shouldn't be too bad.
I'll keep in mind not taking strong meds on an empty stomach. Did your surgery, etc take all day? How long did you have to fast? I hope not the whole day.

Thanks for your well wishes.

ijl

My wire placement was 9-11 and my surgery was at 11:30. I was told not to eat after midnight. I actually got to surgery at 2 with all these blood test problems. But with all this excitement , I did not feel that hungry at all.

kbean

With re-excision they don't need to do wire placements again, so it makes the process much easier. My surgeon preferred to go back in a clean room/operating room. They re-cut the previous incision and in my case it was along the right side of my breast. I had my 3 surgeries every other week over a several weeks and each time was rather nerve wracking waiting for pathology. I definitly needed the pain kills and lots of ice ;o) It was amazing to me how quickly I healed up after each surgery. Get lots of rest, hugs, and take good care of yourself. You will do fine :O)

bluewillow

Hi Helen,
I just want to pop in and say "Good Luck" to you on your surgery. I hope all goes very well with you! I too have DCIS and am scheduled for surgery July 26, so your post and replies have been very informative for me. My surgery is at 1 p.m. so I guess we'll be driving home at midnight!

Again, good luck and God bless you!

Mary Jo

joe1234

Hi Mary JO,

joe1234

Hi Catherine,
I also have dcis low grade and have just been told that I could skip the radiation because the cancer was small. I have been concerned about this because everything I've been reading says that treatment for dcis is lumpectomy followed by radiation. They are just now saying that maybe they could forego radiation for small areas of dcis. Glad to hear that all is well with you. I keep worrying about a recurrence in the future. They also suggest that I take tamoxifen, says it's up to me. I hate that decision, I wish someone could make it for me. I don't like some of the side effects of the drug and if my cancer is low grade I'm not sure I want to take my chances with tamoxefin. I see the surgeon for my mammos which will be every six months. Calicifications were in both breasts but only one had the cancer. Go back for mammo in aug. will probably make my decision then. Did you take tamoxefin? Thanks Joanne

Helenhsm

Mary Jo, I'm glad my posts/questions have helped you. I wish you well on your surgery as well. Keep us posted.

Kbean, how difficult doing 3 surgeries and the waiting. Whew. So you are now done with surgery, right? How long with the incision? And are doing Rads?

Helen

kbean

Hi Helen,
My surgeries were last fall/winter and I finished my 7 weeks of radiation at the end of December. Things are healing really well and my energy level is back to normal. I went through what you are going through and I know how you feel. The biopsy is really tough, but it sounds like you're doing a lot better. You'll do just fine with the lumpectomy. You are through the hardest part. Find people in your life that can help you through it and you will pop out just fine on the other end Please feel free to ask me any questions you might have. I will be thinking of you next week when you have your surgery. To answer your previous question about radiation. It is a little scary at first. Not physically, but mentally. It really doesn't hurt, they just get you lined up and give you a quick couple of beams. Take really good care of your skin (I used Imu Oil) and keep your muscles stretched. Go to radiation (especially the first couple sessions) with someone who is really positive and be really nice to yourself...that's the secret to all of this. You will come out appreciating life even more Big Hugs. Kbean (aka Kathy)

good_grief

Hi, I had a lumpectomy with sentinal note biopsy on a friday morning. Saturday morning I was up and out doing chores, and Sunday was my daughter's baby shower, which I enjoyed immensely, espeically the champagne!! No pain meds, no nothing. As far as radiation, it is non-invasive and no pain whatsoever. For me, the worst part was my mapping and tattoing day when I saw the big radiation machine for the first time, it really scared me. But the techs are extremely caring. And once radiation treatments start, it takes about five minutes, then you're done. You will probably wind up missing the techs once you're finished. Everything will be just fine.

Mary