DCIS Intermidiate and High Grade

Mikela

Hi,



I was dx with DCIS two months ago at the age of 38. Decided to have my very first mammogram that discovered suspicious micro-calsifications that biopsy proved DCIS on two different areas, one Intermidiate Grade and the other High Grade.

I'm about to have a surgery/lumpectomy followed by radiation. My surgery is scheduled next week and I'm scared to death. I've never had any surgeries before and general anesthesia scares me. Can any of you please share with me the whole process from going to the operating room to the recovery room.

Btw I've breastfed both of my kids, my second 3,5 years alone . Thought I'm doing all the right things

mamasixtaz

Mikela-you have come to the right place BC.org is full of great information and personal experiences through these threads. Check out the September 2013 Surgery thread. Many are having the same questions and the discussion board is a great support. You are not alone in your fears about surgery. I was terrified of all the tests and surgeries and still have butterflies thinking about my upcoming exchange surgery, but we make it through it by trusting our doctors and the family/friends who help to support us. Ask your doctors and nurses lots of questions, write them down and take someone with you...you will make it through it!

LAstar

I was terrified of anesthesia too, but I learned to appreciate it after my surgeries last year. The lumpectomy doesn't last long, so you should be up and around in no time. Sometimes the anxiety beforehand is way worse than the recovery. My lumpectomy was an out-patient procedure. Will you have wire insertion?

ballet12

Hi Mikela,

Are you sure you are going to have general anesthesia? Most of the time, the anesthesia used for these procedures is called "conscious sedation", which is a cocktail of anesthesia agents which heavily sedate you and from which you generally awaken relatively quickly once the procedure is done.  The usual main anesthesia agent is propofol. This is commonly used for outpatient surgery.  If you were having a mastectomy, then you would more likely have general anesthesia, which does take longer to recover from.

I have had six breast surgeries, five done with conscious sedation and one done with local anesthesia (I wouldn't recommend that!).  With the DCIS diagnosis, I had three lumpectomies.  I recovered very quickly.  I had the surgeries on a Friday, and was back at work by Tuesday and in my ballet class by Wednesday, doing modified exercise.  You can't do heavy lifting on the day of surgery, and you are likely to experience pain and discomfort for a few days.  Depending on what your doctor recommends and what your pain tolerance is, you may be prescribed some mild narcotics like oxycodone (sometimes a  hydrocodone/acetaminaphen combination).  I really only took those pills in the recovery room and managed fine on Tylenol once I was home, but everyone is different. They often recommend wearing a sports bra following the surgery (day and night) and I did that for many weeks afterward, because there is lingering soreness.  I find that bags of frozen peas work very well to help reduce swelling.  So, all in all, while it's pretty darned awful that you have to go through this at 38, at least they caught it at a treatable stage.  By the way, my mother breast fed four children, and it didn't stop her from getting bc (which was localled advanced and luckily she survived).  We just don't know what causes it in most cases.  Hope this helps a little.

Mikela

Thank you ladies for your replies, I'm not sure what kind of anethestia they'll use, I've asked my doctor if he can do it under local and he said no and that he'll do a better job if I'm asleep so not sure what he meant by that. Whatever they'll use I'm not looking forward to it at all.

I see that some of you ladies had multiple surgeries, may I ask you why?

How long is the radiation, does it varies from patient to patient?



Thanks ladies!

ballet12

Hi Mikela, it is not at all uncommon for those with DCIS to need a re-excision if the area of DCIS is large.  With the initial lumpectomy surgery there may be close margins or no margins.  What the surgeon is looking for is an area that is cancer free in the outer edges of the tissue which is removed.  They usually hope for at least 2 mm of "clean" margins.  It doesn't always happen.  In my case, it took three lumpectomies to get clean margins.  Some individuals proceed to doing mastectomies if the margins aren't clean and an MRI suggests that there is a lot more DCIS.  My MRI did not indicate that, so I was able to stick with lumpectomies.  I hope that you only require one lumpectomy, but with two areas of DCIS, it may be difficult to accomplish that.  Wishing you the best with your procedure, and of course with the results of the pathology.  And as I said before, you DON'T want to do this under local anesthesia.  You would feel pain, and the surgeon would need to repeatedly inject you with a numbing agent (like a giant version of filling a cavity), not to mention the sensation of the breast being pulled and tugged.  I did this once and NEVER AGAIN.  I was really exhausted and stressed afterward.  Enjoy the pleasant sedation and before you know it, you'll be up and feeling fine.

The radiation varies tremendously, patient to patient and center to center.  I had the 16 day Canadian protocol, which is the equivalent of 25 days, but given in a shorter period of time with a higher dose.  There are individuals who do 25 days or 33 days.  Some places do boosts as well (concentrated boosts of radiation to the site of the DCIS). 

Anonymous

Mikela---I had conscious sedation (described very well in above post by Ballet) which was great. I didn't feel or remember anything really; just talking to the doctor and nurses  as I was getting wheeled into the OR and then waking up in the recovery room all snuggling wrapped up in a chest binder (which actually was comforting, but got kinda itchy cuz I had to keep it on for 2 days; then I could remove and shower with just the steri strips on).  They kept me there for about and hour or so, gave me juice and crackers, then I went home and slept most of the rest of the day.  I used ice on the area for a few days and kept a little gauze pad over the area for comfort.  I was up and about the next day at home, and back to normal activities in less than a week.

I can't speak to radiation personally, but my mom had it many years ago. Her main issues with radiation were some pain and tenderness at the site, and a lot of fatigue; she napped every afternoon as she was very tired.

Good luck with everything.  Anne

Mikela

Thank you ladies so much, I have learned here more form you guys then form my own doctor, he basicly never answers any of my questions. So I should then ask for a concious sedation?

Natters

I am another fan of conscious sedation. Much fewer side effects. It's as ballet and awb described, a really easy day. I went straight from surgery out for a late lunch and downed a big cheeseburger and brownie dessert. Then I went home to relax but I probably could have gone to work. The biggest thing for me is that they wouldn't let me jog for several weeks because I got a nasty seroma after my stereo biopsy. But I was back at work and doing normal, non-workout activities the next day. I think I was allowed to shower after 48 hours (I did shampoo hanging head over my tub before that). Like you, this was my very first surgery ever, and it really was no big deal.



As for radiation, I did not get tired until the end, and even then it was nothing that stopped me from working or getting anything else done. I just went to bed an hour or two earlier, near the end. I think rads is harder on people whose bodies have already gone through a lot more with mastectomies and chemo.but if you're generally healthy and have a lumpectomy, you'll be fine. Although between surgery and radiation, surgery was a lot easier because it was so short and less time-consuming.

ballet12

Hi Mikela,  I would be surprised if they planned to give any anesthesia BUT conscious sedation.  You can ask, but that's probably what you'll be getting anyway.  When patients have outpatient or ambulatory surgery, they get the conscious sedation and they are taken afterward to a recovery area specifically for those patients.  Lumpectomies generally only take about a hour or so (sometimes less than that) in the OR.  They don't need more than the conscious sedation. General anesthesia takes longer to recover from and those patients are usually taken to another recovery area to be monitored more carefully by nursing staff.  General anesthesia is required for more lengthy/complex surgeries. Lumpectomy patients are generally "in and out" quickly.  I know some patients have had to stay longer, because like anything else, some take longer to recover from anesthesia than others. 

Natters

My second opinion surgeon wanted to do my lumpectomy under general anesthesia, so some lumps are done that way. My surgeon explained that the excision itself doesn't take long, but in my case they sent it straight to pathology,and there was maybe a 20 min wait for them to come back with the news that they had gotten the right spot. So they had me out that whole time, while they waited. Then they put in a couple steri strips to close it up and you're done.

HBwoman1

I am having a wire inserted or so I was told by the counselor...why did my surgeon not tell me this!...Lumpectomy with radiation is the plan.  They want to do invasive radiation but not sure I can do that, so going to talk to surgeon about doing non invasive radiation.  I always ask for something while in the pre-op, half the time you will be asleep before they get you into the operating room. 

Invasive ductal was my diagnosis....

HBwoman1

I am having a lumpectomy...diagnosis is invasive ductal estrogen sensitive.  I sure hope I am not awake for this..I think they are going to test some lymph nodes also.  Did you have invasive or noninvasive radiation?  They want to do invasive radiation 2x day for 5 days with a tube inserted and "leads" hanging out for 7 days..non invasive is just a beam of light correct?  How long does non invasive take?

ballet12

Surprised they would do general anesthesia.  Did you have intubation?  Breathing tube put in?  They could still do the conscious sedation if they are checking on the pathology, by continuing to give you more of it if they need to extend the time.  Conscious sedation doesn't mean you are aware of your surroundings while it's going on.

Annette47

I'm pretty sure I was under general anesthesia for my lumpectomy with SNB.  Maybe because the SNB is more intrusive or something?

About the radiation, it depends on the protocol ... typical for external is about 6 weeks, 5 days a week.  Each treatment only takes a few minutes though.    There are other protocols which give a higher dose for fewer sessions (some even twice a day), but I'm not as familiar with those - they aren't as commonly offered.   If you want more information, you should check out the radiation forum on these boards.

Natters

If you are you younger (under 50) and had a lumpie, they generally won't do anything but the standard 25-30 dose external radiation of the whole breast. I know because I asked and also looked up the guidelines.



This is a paper with guidelines for partial breast rads specifically saying its not recommended for women under 50:



http://download.journals.elsevierhealth.com/pdfs/journals/0360-3016/PIIS0360301609003137.pdf



And You can read about different types of rads here:



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

lane4

I was intubated and given general anesthesia for a partial mastectomy at the age of 48. The surgeon went to the chest wall (the posterior margin was chest muscle) and I don't know if that makes it different from your typical lumpectomy. I also had to follow with 33 radiation treatments, 25 whole breast plus 8 boosts.

Mikela

Thanks ladies. I do feel a little better hearing your stories, thank you so much. Yeah me too I heard them saying that they'll insert some wire first, I have no idea why. So we can shower after 48 hours correct? How about swimming in the pool, in my case I think I'll miss working out the most.



Thanks ladies!

Mikela

Oh one more thing I forgot to ask you ladies, after lumpectomy how long does it take to start a radiation treatment?

Annette47

Don't know about swimming, but radiation typically starts about 4 weeks after surgery, although I've heard of people starting a bit earlier or later than that.

Jelson

I had a lumpectomy and I believe my radiation started in 6 weeks. as far as swimming - post lumpectomy - the issue is wound care - as with any wound. during radiation? I didn't, but I believe some women have done -  Check the radiation board, search 'swimming'

hoping42

Hi there!  

I was 42 at the time of my diagnosis after a routine mammogram, followed by u/s, stereotactic biopsy.  DCIS, grade 3 with comedo necrosis.  When I went in for my lumpectomy I was under general anesthesia.  I also had a SNB.  The hardest part of that day (physically) was all the prep for the wire placement.  I had 4 wires instead of the standard 2.  The medical team that placed these were very nice and made it as good as it could be.  My SN was sent to the lab for an immediate report for malignancy.  Thankfully none was found.  I spent a few hours in recovery and then was able to come home.  I did have a punch biopsy of the nipple (with my insistence because I was having some subtle change there-and with the dcis dx I wanted to make sure nothing else was going on.  I am glad I asked!!) done which did come back with the result of paget's which is why a mastectomy was performed.  My original plan was to have a lumpectomy with radiation.  

I am thinking of you and I promise you that it is the fear of everything that is worse than the actual procedure/recovery of surgery.  Take good care of yourself and hope you recover lickety split!!!

((((hugs))))

proudtospin

I am a regular swimmer, they never gave me instructions after all the biopsies, lumpies and rads but I exercised caution.

I waited for the wound to heal and did not swim during rads, mostly as chlorine pool is drying and radiation was drying also

but ask the docs as always

I just changed up my exercise routine, more stationairy bike and not pool

ballet12

Hi Mikela,  I was actually told by one surgeon, awhile ago, that I couldn't swim for a month post lumpectomy (excisional biopsy) while the incision healed.  There are lots of nasty microbes in pools, and he has had patients contract infections.  So, when I had a series of lumpectomies last year, I recalled what he had said on a previous occasion and refrained, even though I switched to a different surgeon for the last two surgeries.  Then after all those surgeries, I was a bit self-conscious about wearing a bathing suit, so I still refrained from swimming.  During radiation, I was told that it is possible to swim, but that the radiation is very irritating to the skin and the chlorine is not good in that situation (you have to put on lots of special moisturizers during rads).  Finally, a few months after radiation, my breast started to look better and I began swimming again.  But, I did exercise after all the surgeries and during rads, except for one week post rads when I was just sooo tired.  Play it by ear.  About showering, they will give you specific instructions post-op.

Mikela

Thank you ballet12 and all other ladies I really apreciate sharing your stories with me.

On the front page of this website it says Read why Breatsfeeding is Better, well I breastfed both of my kids, my second over 3 years... oh well at least I did something good for my kids.

ballet12

Hi Mikela, I hope the surgery process and recovery are smooth for you (and hoping you succeed with one surgery and no surprises, but be prepared anyway). It'll be a tough year, but after the treatment, there's light at the other end.

Mikela

Thank you ballet12. My surgery is scheduled this Thursday and to be honest with you I'm really scared.

Natters

I was nervous about wire placement and the long delay between the placement and surgery and not being allowed to eat anything for so long, so I asked for something I could take and was given a prescription for 1 Ativan pill to take that morning. It did not make me feel druggy, just relaxed and ok with anything they wanted to do I would ask for it again!



During rads, I did go for a swim inadvertently....before a work trip to Miami, I asked my rad onc about canoeing and if it was ok to get wet and he said it would be fine. Then again, that kind of water isn't quite as drying to the skin as a chlorinated pool. I don't think it affected me. Iwas still feeling strong the first 6 weeks of rads, and able to work out.



None of this is fun, but you can so it! You will get past this, like us. You got this.

Mikela

Hi Natters thank you, what is that wire placement, does it hurt?

Natters

Wire placement is what they use if what you have is so tiny that they can't feel any sort of lump to guide the surgery. So they have to image you with a mammogram, ultrasound or MRI- they use one of those machines to locate it. Once they've located it, they insert a very thin wire into your breast so that the surgeon can find his or her way. At my cancer center, they numb the area with lidocaine so you don't feel it. To be honest, I found it less uncomfortable than my biopsy, because it was over a lot faster. Also, I had that ativan In my case, it was only about 15 minutes, and that was going all the way to the back of my chest- but it probably depends on how hard it is for them to find and how many wires they need to place (some people get several). After the placement, they tape the wire down or put it in a little Dixie cup or bandage it loosely- just so it doesn't catch on anything while you wait for surgery. Can't remember if they let me listen to my iPod, or if they wanted me to listen to their instructions (mine was mammo-guided and they kind of move you around in the beginning).



Sometimes I think the anticipation is the worst part- glad you are just getting it over with soon.

Mikela

Wanted to let everyone know that I had my surgery today, everything went fine and I'm home recovering. It really wasn't that bad, I think it's just that fear of unknown that we all have.

Thank you ladies so much, love ya all.