DCIS and Mastectomy?

LAstar

Positive, congratulations on making your decision! I second that great advice on getting out and working your body while you can. I'd been doing a lot of core workout before my bmx and it really helped a lot. I'm 9 weeks out from a bmx with hip-flap reconstruction, and I'm at nearly 100%. It is so fantastic to be on the other side of this and to feel so hopeful about my prognosis. PT starting at about 4 weeks was very helpful. I am working with someone who is familiar with lymphedema and does lymphatic drainage massage. It's hard not to worry, but it is a great time to make your list and get things done. Enlist some help for your recovery period. Meals & house cleaning help were so wonderful. I read some fun books and watched some movies I haven't had time to see. Be ready to give in to the recovery period. You will just need to rest and let everything else go for a while. You will get through this and you might just be thrilled with your reconstruction too. Best wishes!!!

positivenergy

This is so helpful, I was not even thinking about this stuff and now my mind is very busy thinking what I need to do, besides take good care of me and exercise and eat well. 

JMH46

I have finally made my decision and going with Yale! They are good people from nurses to doctors to the girls in the boutique Wow!! I am scheduled for the 27th.

Positivenergy today is your day! I am thinking of you and hope everything is going well!!!

proudtospin

J--congrats on your decision, now stay busy between now and the day and try not to think to much about the day~~

Did I tell you to get a pedicure?  if not, then go get one and mellow

Hoya03mom

Jmh. Ditto on the pedicure. Had to take off nail polish but kept the pretty feet. Which mds are you going with? Pm me if you want details about my Yale experience. Btw if you are not local the suites at Yale new haven great deal. $99 nite for suite with living room and kitchen. We stayed there night before since I had to. E there early. There is a sleeper sofa in hospital that my family used nights 2-4. First night I was in icu

mlsnow1964

I am stage 0, just had double mastectomy with reconstruction 2 wks ago tomorrow. I am so grateful to find this site. I am on my way to the doctor today (plastic surgeon). I will receive no treatments. I am however having issues with swelling after my surgery. I am interested in supplements. 

JMH46

Proud,

Yes! The pedicure sounds like a good idea!! I am keeping myself busy good advice. I have been doing more on the weekends than I have under normal circumstances. I feel like I have to do all these things before I go in as If I won't be able to again! Funny I know it's not true just a weird feeling!!

Hoya, 

I am local only 40 minutes away. Surgery is at 1:00, Lannin is my BS and Fussi is PS. They have both been great! and their staff also! I can't believe what care so far! I am fortunate to have my mom stay with me for 1 week after surgery. I live alone with my 17 year old daughter and she is in school anyway. My mom is a retired nurse so she will no doubt be a comfort to me and I know she will feel good about being there. She lives in Florida for the winter months so this will be a special visit before she leaves to go back.

Misnow,

I hope you are doing well and your visit with your PS goes well! I hope the swelling is nothing major and is taken care of with no problems.

mlsnow1964

All went well at PS today. Last drain out. Thank goodness, what a relief.

proudtospin

JM, the ultimate is the full spa day, easily created with your local hair dresser or in my case, my local gym!  this plan is totally approved by my mamo center and my onco (who thinks it a hoot really!

spa day before a mamo or any stressful testing can include all of some of the following....

pedicure, manicure, massage, facial (my fav here), a personal training session ....get the idea?  you deserve it and it brings down the BP for sure!  feel free to adjust to your own preferences

Moonflwr912

Mls, glad you got the drain out. I am grateful mine came out yesterday. Feels so much better.

Hoya03mom

JMH...Dr. Fussi is the other PS we were deciding on...I really liked him too.  And how lucky to have a mom so close to help out..and with nursing experience!!

misnow....isn't it just the greatest when the drains are gone!!

CindyLooWho

I was just dx'd a few weeks ago and I'm struggling with the decision. I'm more afraid of making the wrong choice than of the cancer! I have extremely dense breasts, the surgeon said like rocks. The right is where the DCIS is, the left is very fibrous and cycistic. Lots of BC in my family, and I'm waiting for my BRCA results. As far is I know right now the DCIS is very small, but I'm not a wait and see girl and my gut was take them both and let me move on. I feel like the docs are all about conservation and they think I'm crazy for considering BMX. It is helping me to read that others feel the same way.



I meet the PS next week and the RO, although I'm terrified of radiation...I'm hoping that will me decide I go BMX or not.

KellieDenise66

Hello Ladies,



After 7 1/2 weeks agonizing over the right surgery, and even more then that the RIGHT surgical team, I'm finally moving full speed ahead. I'm scheduled for a NSM on

9-24. Did all my pre op today. This decision was extremely difficult, several consults, even went as far as canceling a scheduled surgery date because I was so confused, and frustrated.



I'd been told that I wasn't the best candidate for a NSM by 2 plastic surgeons based on my body type. I'm large breasted, and droopy. I quickly accepted my fate and moved forward to a BMX. Afterall getting the cancer out was my first goal. Then I was hit by a curve ball. My new BS felt like a NSM was in my cards and recommended I seek out another PS' opinion. I've been told the two of these doctors operate together for the duration of the surgery, and are having success with women like me. Im very frightened but feeling really good about my decision. Several wise women on this site told me that when I met the right surgical team I'd just know it. They were right! I wasn't prepared for it to take sooooo long, but the idea of going into a surgery without any level of peace was unbearing. Thank you girls for you're incredible insight!



I do have a question about SN biopsies. As far as we know my BC is on my left side but obviously the proof is in that final path. On my pre op paperwork only a lft sn biopsy is indicated. This concerns me if there's something sneaky going on in my right breast, and not having any sn mapping. Id love to hear your opinions, and experiences. I'm putting my list of last minute questions together for the BS.

Thank you for letting be here with you all!

~Kellie

Moonflwr912

Definetly insist on SNB for both sides, you can never go back to get one once the breast tissue is removed. And, my IDC was found on my "good" side. So I was glad to have the SNB on that side too.

Moonflwr912

Definetly insist on SNB for both sides, you can never go back to get one once the breast tissue is removed. And, my IDC was found on my "good" side. So I was glad to have the SNB on that side too.

LAstar

I had DCIS on the left, and the MRI indicated suspicious spots on the right.  I had 2 nodes taken on the left and none on the right, where nothing at all was found.  I think that Moonflwr's experience must be very rare and her nodes were thankfully unaffected.  Low-grade DCIS is lower risk for becoming invasive from what I've read.

Beesie

Removing lymph nodes puts you at risk of lymphedema for the rest of your life. Most women take precautions in order to reduce the risk of lymphedema (no blood draws, no blood pressure) on the side where the nodes were removed.  Removing nodes on both sides significantly increases the difficulty in taking these precautions.

Personally I would not agree to having any nodes removed unless it was necessary either because invasive cancer had already been found or because the risk was high that some invasive cancer might be found (i.e. the diagnosis prior to surgery included either the presence of high grade DCIS or DCIS with comedonecrosis or a large amount of DCIS or multi-focal DCIS).  

The following study suggests that SNBs are not necessary on the contralateral side when the diagnosis is early stage BC.  Indications for Sentinel Lymph Node Biopsy in the Setting of Prophylactic Mastectomy "CONCLUSIONS: Overall, SLNB in patients undergoing bilateral PM or contralateral PM associated with early stage disease is not indicated."

It is agreed that by most in the medical profession that an SNB is advisable when undergoing a MX for DCIS. But even here, the discussion usually focuses around "high risk" DCIS.  The point made is that the factors that lead to the necessity of a MX for DCIS are the same factors that lead to a higher risk that the diagnosis may be upstaged to IDC once the MX pathology is in.  So even with DCIS, there is a question as to whether an SNB is necessary with a MX if the diagnosis is low risk (small, low grade, single focus). When I first came to this board 6 1/2 years ago, it was common to see situations where an SNB was not done if someone was choosing to have a MX for low grade / low risk DCIS.  Kellie, I'm of course not suggesting that an SNB shouldn't be done on your DCIS side, but this further raises the question as to whether an SNB is necessary or advisable on the non-cancer side.

Of course, anything can happen and you could be one of the very few who are found to have an occult invasive cancer in the other breast.  If you don't have the SNB and this happens, then you will need to have more nodes removed.  While an SNB is difficult (but not impossible) to do after a MX, should this happen, most surgeons are able to do an axillary node dissection without removing all the first and second level nodes, thereby still minimizing the number of nodes removed. 

Beesie

Deleted.... a double post.

Is it just me or is BC.org stalling whenever you press the "send" or "enter" button today? 

Hoya03mom

Cindyloo...I was where you are a few months ago...so glad I decided to go with bmx.  Did immediate reconstruction...8 weeks out and other than a few area that are slow healing, the new boobs look great and since all came back clear I don't have to have anything else.  MD's wanted me just to do Rt, but then I would have needed radiation and hormones...and would worry every time I felt a bump.  It is a tough decision.  Talk to a lot of people about their choices (you will find that pretty much everyone you know knows someone with breast cancer) and then go with your gut.

Good luck

Hoya03mom

KellyDenis....ditto on asking that they do both sides.  I ended up with "stuff" on both sides...but thankfully all nodes were clear.

CindyLooWho

Thank you Hoya03mom!



I woke up this morning with my "gut" feeling back as strong as ever. I called the surgeons office and told them not make the appt with the RO. If that changes after I meet the PS I can always consult with them later. I feel so much better. When I speak to the people that really know me they confirm that what I'm thinking makes sense for me.



I'm 49 and really active and really healthy...which is why this angers me so much, but i digress, and I just lost 20 lbs and feel really great. So avoiding the torture of ongoing monitoring is really important to me.



I have been reading everyone's stories and no one that did BMX or UMX seems to have any regrets. That has helped me a lot!

Kd6blk

The submit button is messing up for me too. I had agressive DCIS and had SNB on left side and there were ITC in two nodes. They still do not know why. The nodes taken out before mastectomy on right side were clear. So is there a good article on what not to do on SNB side as that is my only good arm to poke...I don't seem to have any issues with lymphodema...now I have to take estrogen killing pill due to the nodes...but that is all.

Moonflwr912

Oops, perhaps I should have made it clear that my family history my mother included, had bc suspected in the right side breast. Two aunts died after the bc was not found in the left breast till too late. My mother insisted on a BMX because of that. She died 7 years later of mets. I believe she had her2 but they did not know it then. It was over 20 years ago. So I followed my family pattern. It can't help but color my thinking. So that's why I went BMX right away. And yes, so unusual the BS and PS were stunned when it was found. I, on the other hand was relieved. I made the right decision for me. But I told the story, because you should at least consider the possibility. And I hope to hell, you don't have it. Much love.

Moonflwr912

Oops, perhaps I should have made it clear that my family history my mother included, had bc suspected in the right side breast. Two aunts died after the bc was not found in the left breast till too late. My mother insisted on a BMX because of that. She died 7 years later of mets. I believe she had her2 but they did not know it then. It was over 20 years ago. So I followed my family pattern. It can't help but color my thinking. So that's why I went BMX right away. And yes, so unusual the BS and PS were stunned when it was found. I, on the other hand was relieved. I made the right decision for me. But I told the story, because you should at least consider the possibility. And I hope to hell, you don't have it. Much love.

KellieDenise66

Thank you ladies for sharing all your thoughts, experiences and valuable info!!! I've got do my homework. No rest for the wicked! A couple of things I've learned on this BC journey the first is that there is never a shortage of questions to be asked. Just when I put one question to rest there are a dozen more waiting in the wings. The other is that there isn't always going to be one RIGHT answer. I wasn't prepared for some many shades of grey, and so many different opinions within the medical community.



Cindyloo- I'm sorry you're struggling. I so feel your pain and frustrations. Keep asking those questions until you get the peace of mind u deserve. Best wishes.

Momluke

I was dx with DCIS, high grade with necrosis and according to the MRI, around 4cm. The BS was estimating at least a .5cm margin for a lumpectomy. I chose UMX. The size of the cancer (which ended up to be 5cm, not 4 as suspected), the grade (high and aggressive) and the anticipated margins. The final nail in the coffin was the recurrence possibility going from 20% or more with a lumpectomy (and rads) or less than 1% with MX.



I had an immediate recontruction using the latissimus dorsi muscle coupled with a silicone implant. My right breast was lifted and reduced to match the reconstructed one.



I have absolutely NO regrets about my decision. While waiting for my BCRA results (which came back negative) I had decided to do a BMX and ovary removal, based off of the results. I am only 41 but have had and nursed 5 children and had a tubal ligation in 1998.

Kd6blk

I think it is interesting how unexpected stuff turns up even when we are FIRST told nothing is there. I think the technology has a way to go, which I think is WHY so many only find out about cancer when they are stage1, 2 or higher. Some questions I have is why there are not more questions asked about my history, such as:

Did you nurse your babies, how long?

Did you have a tubal ligation?

Did you take birth control?

Did you have morning sickness or other major symptoms during pregnancy?

Did you suffer hot flashes or other symptoms during menapause?

Seems like some of these things could have correlations...just curious...

Lisa

CindyLooWho

They did ask me those questions.  I'm waiting for my BRCA results but it won't change my mind.  In the last month i have had 3 mamms, 2 stereotactics, 1 MRI and 1 ultrasound...and a partridge in a pear tree.  I'm not doing this every year or two or 6 months...uh. uh.

proudtospin

Cindy, seems to me you have made the right decision, mano you have had a lot in a short time and I woule no way want to go through it in a few months.

guess so far I have gotten off with not as much but if mine goes like yours, off they go

best of luck

proudtospin

Cindy, seems to me you have made the right decision, mano you have had a lot in a short time and I woule no way want to go through it in a few months.

guess so far I have gotten off with not as much but if mine goes like yours, off they go

best of luck