Young and new DCIS diagnosis.

Janewhite

I'm 40 years old, and I've just been diagnosed DCIS following a routine screening mammo.

I have a few appointments for more testing: More biopsies, because there were several different calcifications visible and the first biopsy only sampled one, and genetic testing.

Most of the important questions are yet to be answered, but I'm leaning towards full masectomy if there are genetic risk factors or multiple areas. I have large breasts and find them very inconvenient anyway!

So how bad is the surgery? Also, when does the biopsy site stop hurting? Anything else I should know? I have 2 little children, haven't told them anything yet.

Moderators

Hi Jane, and welcome to Breastcancer.org,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our Community an amazing source of advice, information, encouragement, and support -- we're all here for you!

Many members here will recommend icing the biopsy site for some relief and a mild pain reliever -- we hope you find some relief soon!

We also want to point you to the Surgery - Before, During, and After forum where many members discuss their experiences with surgery. Feel free to post there to ask what to expect. There's also a helpful page on the main Breastcancer.org site on Mastectomy: What to Expect which you may find informative.

We look forward to hearing more from you and supporting you through your treatment and beyond! Please let us know if we can do anything to help.

--The Mods

Melbo

it may be a moot point depending on how far the DCIS is spread through your breasts, but there was a recent study that found that lumpectomy with or without radiation offered better outcomes than mastectomy. Nothing is guaranteed of course, but it might be worth a read.

https://www.breastcancer.org/research-news/lumpectomy-plus-radiation-offers-better-survival-rates-than-mastectomy-for-early-breast-cancer

i had horrible bruises from my biopsy for over a week, but they faded eventually.

I had a lumpectomy and then bilateral lift and reduction to make sure everything matched in the end — I’m pretty sure that surgery is standard for most care centers and they can reduce your breasts as much as you want them too while they are in there if you decide against the full mastectomy.

The recovery for the surgery I hadwasn’t horribly painful, but the drains were annoying and sleeping on your back will get really, old really fast. 6 months later the skin is still somewhat sensitive and there is a weird numb and yet bruised sort of feeling to most of my breast area and down under my arms where the scar are.

bcincolorado

I am sorry you are dealing with this. I had been given very tiny ice pack things to put in my bra after my biopsy to help with the swelling and pain. Hold for a few minutes and it should help some.

Once you make a decision on your surgery you will have will depend on recovery too. You will probably be told not to lift a lot at first either and sounds like you have small children so they need to know mom may not be able to pick you up but there may be a way for you to sit with them so they can still be close to you. Best wishes.

Janewhite

Thanks, folks who replied. I saw my doctor today, she told me that there were a bunch of calcifications across a fairly large area, which would mean removing a bunch of tissue if they're all bad. I told her that I'm unhappy with my large cup size anyway, and we agreed on lumpectomy with bilateral reduction followed by radiation if my genetic testing is normal, bilateral masectomy if genetic testing reveals serious risk factors.

Looking forward to moving from the big titty club to the small titty club!

BtwnStars

Hi Jane, sorry you find yourself here. I also chose a lumpectomy with oncoplastic reduction due to large breasts. It's kind of like trying to get a win in a really crappy situation, but hopefully the reduction will improve your quality of life in the long run. My biopsy spot def hurt for like a week, I had a small hematoma, but take tylenol and ice on and off and it will go away. The biggest thing with surgery is resting and having help. If you have small children, def make arrangements to have family/spouse help more and you will not be able to pick them up.

Right after surgery I was feeling pretty good bcz meds were still working well, but once everything started to wear off about a week in, I def felt more irritation around my incision. I would say resting is most important, meaning reclining back to take the gravity off of chest area. Also if they wrap you in a ace bandage I would leave that on for 48 hours if you can and even put it back on. The compression will actually feel good. Then find some cheap zip front bras on amazon for post-surgery, get 2 sizes, your current one and one smaller. You will be swollen at first but as it goes down you will want to compress more and wear the smaller size. A weird thing I've found is how my posture and shoulders have been affected by large chest size, I am working on rolling shoulders back constantly and not hunching over.

The healing process takes time and there are all kinds of things to get familiar with, happy to answer any questions you have. They told me 4-6 weeks and I really didn't feel better until the 4 weeks and still really couldn't be too active until 6. I was comfortable walking for exercise at 5 weeks. Get a pillow for the car ride home to go between seatbelt and chest. The bumpy roads will hurt, tell your driver to slow down! If you have a recliner chair, plan on using that, or ask to borrow one from family/friends. It def helped me be able to get up and down easier. Drink lots of fluids, get lots of protein, I drank a protein shake a day right after surgery.

Will you be meeting with a plastic surgeon to go over your wishes for your outcome? Make sure you are clear with size expectations and such, altho may depend on what is to be removed.

TB90

Janewhite: The study referred to above is not specific to DCIS and there are many issues that challenge the results. I would not recommend using this information to guide a decision as important as this one. The outcomes and percentages do not apply to DCIS.

Melbo

sorry about sending you bad info! I wasn’t thinking about the fact that DCIS is treated quite a bit differently than IDC even though they are related

Janewhite

Update: Genetic testing was normal. I spoke to the plastic surgeon who will work with the breast cancer surgeon, and we have a plan. The left breast shows several calcifications in one area, so the cancer surgeon will remove not just the known carcinoma but the entire suspicious area. Then the plastic surgeon will remove a similar quantity of tissue from the other side and complete the reduction and lift procedure. After I recover from the surgery, I'll do radiation.

Surgery is scheduled in early August.

For now, I'm in a pretty good place mentally and determined to have as much fun and get as much exercise as possible between now and then. I've had surgery several times before, but this is the first time I'm having surgery for something that isn't (yet) causing me major problems, which means I'm healthy enough to enjoy life during the next few weeks.

Then of course, I'll need to worry about taximofen. But not yet.

Ilikedogs

Hi. It looks like calcifications were your only sign on the mammogram? I am undergoing a biopsy for a spot with calcifications on Monday and obviously am nervous. So if a biopsy comes back bad they go in and remove all calcifications? Or are they removing your DCIS only?

My spot with calcifications is 1.8cm long and my boobs aren’t large so that worries me

Did you have any other symptoms along with your calcifications?

Also, sorry - last question - did the radiologist indicate before biopsy that it may be cancer? Mine are indeterminate. My BiRAD is 4 but she didn’t give me a letter to go with it (a,b,c).

Thank you!

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Jetcat

Hi Likedogs- your Birads 4 has a high likelihood of being benign - 75% I believe. Calcifications form when cells die - either from benign, precancerous or cancer causes. Sometimes the appearance of the calcifications point more towards cancer. In those cases, you would get Birads 5. Birads 4 means that they just don’t know until they do biopsy. Lots of radiologists don’t assign a letter. The size of the cancer (if that’s what it is) can’t be determined by the size of the calcifications. That determination really can’t be made until final pathology after surgery. When the biopsy is analyzed, they’ll have a better idea of size but it’s still an estimate. I did read that a large percentage of cancers found just by calcifications are DCIS. - Stage 0. But you are still more likely to get benign results from biopsy with a Birads 4.

I’ve had DCIS twice - first time Birads 4, 2nd time Birads 5. I’ve also had a Birads 4 that was benign.

‘Take it easy and best wishes

Janewhite

Hi, Likedogs. When my first biopsy came back positive, the doctor offered to biopsy the other calcifications and remove the DICS only. Because I had large breasts and didn't like them, we instead decided to remove all the suspicious areas then get a reduction and lift procedure. They call it "oncoplastic reduction."

I had that done today and I am doing well.

Remember, only about 10% of biopsies are positive. In women my age, 40, only about 5% are positive. But if it is DCIS, treatment is pretty routine.

Ilikedogs

Thank you so much for all your responses. Janewhite, I hope you are still doing well after your surgery!

My biopsy went well - much better than I feared. Results are tomorrow so a bit of a nerve wrecking day today. But thank you for all your reassurances about a possible benign outcome! I will update when I hear anything

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Janewhite

I got the follow up reports for my lumpectomy. Good news is, still Stage 0. Clean lymph nodes, no inflitrations.

Bad news is, I have at least 3 separate DCIS sites, and one of them didn't show up on the mammogram at all. The surprise site had positive margins, that is, not all of it was removed. My doctor recommends 1-sided masectomy, and I've decided to do a flat masectomy (no implants) as soon as it can be arranged.

LivinLife

Sorry you'll have to go through more surgery Jane though obviously good they found that "surprise area!" Great news on no issues with nodes! Here's hoping that truly stays DCIS at final pathology..... Wishing you well with the mastectomy!

Janewhite

Well, just returning to follow up. I did the second surgery. Honestly, I wish I'd gone straight for double mastectomy in the first place. I just don't like having breasts, I never have, and even after the reduction I think my remaining breast is too large. Also, apparently breast reduction incisions have like a 15% chance of significantly delayed healing, which I did NOT know when I made my choice. A month after the reduction, part of the incision is still open. My mastectomy 12 days ago is in better shape. I might have my remaining breast removed, but not until next year.

So, to anyone else thinking about it: Do you actually like having breasts, or would you be happier with no breasts? If you don't want to have breasts, just go straight for the double mastectomy and get it over with!