Lumpectomy/rads vs Uni MX for DCIS Grade 3 Comedo OVERWHELMED!!

MizMimi

Hi ladies.. my update is that I chose a lumpectomy... it was a very hard decision to make and I'm still not sure if it is the right one for me.. but as for now....I am glad that it's out of me. Next up is radiation in 6-8 weeks and I am very worried about it.

I don't want to risk Lymphedema, heart and lung damage, rib weakening...etc, etc, etc. But since I didn't choose the UMX, I was told I have to do rads.

I guess I am taking my chances on it not coming back but I do worry that it will. All I know is this all sucks. Cancer sucks.... and I feel bad for myself and for all the other women going through this who are worse off than I am.

queenmomcat

Thank you for the update, Mizmimi. It's a [bleeped] decision either way, but I wholly support your right to choose for yourself!

april485

I just noticed that a few ladies took my post on this thread in completely the wrong way! I was NEVER trying to "MX shame" anyone! I support everyone's right to choose which treatment is right for them. I am incensed that you took umbrage with me just making sure that everyone who reads this thread KNOWS that there is still a chance that you will be told you need radiation after having a MX AND people absolutely DO recur after having a MX as well, even if the chances go down some after this surgery. There are several women here who did exactly that and so I felt compelled to make sure everyone had all of the facts before making a choice. I would NEVER assume that my decision to have a LX was right for someone else so please know that this is not what my intent was. If MX is right for you then that is exactly what you should do. I have been here a couple of years and am always helpful to newbies and wanted to make sure that everyone knew the facts. That was all I was doing.

MizMimi, I am glad that you made your own choice on what to do, as hard as it was. Having any of these treatments is very hard but we always want to make sure you have all of the facts. I know that you did the best you could. You should not look back. It is hard enough to make the decision so never second guess yours!

As for the "miniscule" chance of recurrence of DCIS after BMX, tell that to this woman!

https://community.breastcancer.org/forum/68/topic/832617?page=1#post_4420597

Annette47

April - I didn’t see anything wrong with what you wrote earlier, and as to the risk of a recurrence or even a new cancer following a MX, I have a friend who had a BMX for a small area of DCIS. 8 years later she was diagnosed with Stage 3 cancer. It was lobular and on the “good” side, so was not a recurrence but a new cancer, but because it’s hard to really do good checks after a BMX (she had a flap reconstruction and was no longer getting mammograms as she had no breasts) it wasn’t caught until it became large enough to be palpable.

Now, I am very aware that stories such as hers are very rare, but it can and does happen, and I agree with you that people should be aware that the risk, while small, is very real.

labelle

It seems you (original poster) are quite worried about heart damage. Any chance you can seek treatment with another radiologist. My IBC was on the left side and I had some big qualms about RADS, but was able to find a radiation center nearby willing and able to do RADS in the prone position which alleviated my fears about heart damage to a large degree. You do have plenty of time to look for another radiologist, as RADS aren't generally started for several weeks after surgery.

And as my surgeon pointed out when I was trying to decide which surgery to have, if you hate your LX, decide you can't go thru w RADS or whatever you can always have a MX later (of course he'd be doing the surgery, not having a second surgery so I thought that was easy for him to say). But there is a certain amount of truth in that nugget.

MizMimi

In light of my sister now being diagnosed, I may not do radiation at all now. I am considering going back in for MX instead but I'm going to wait to see how her DX and staging goes.

Thank you for your suggestions, though.

april485

My goodness MizMimi! So sorry to hear about your sister. I am sure you will make the best decision for yourself. Hugs!

queenmomcat

Your sister too? Oh, no! Keep us posted?

SKR22

Just found this blog and hoping to get enough info to make a good decision

I am 68, diagnosed in left breast with high grade DCIS. I was set to start radiation therapy and went for my post surgery Mamogram 5 weeks after lumpectomy . Now the find 2 more areas of suspicious calcifications, same breast, different quadrant Had biopsy, now having second lumpectomy I am being treated at a leading Breast Cancer Center. Still not understanding why they did not see this in original Mamogram and ultrasounds. Now thinking of DMX but concerned about the major surgery. I am very conflicted and quite stressed. Any input as to my decision will be helpful. Thank yo

Moderators

Welcome SKR22,

We're sorry you have to be here, but really glad you found us! You've just joined the most welcoming, supportive, and knowledgeable breast cancer Community around!

We know your decision is a tough one -- and there will be lots of members joining in soon to lend their advice.

You may also want to start your own thread to gain some more attention. You can do so by navigating to the forum you find fitting, and selecting Start a New Topic. Type in your headline, and then your post in the text boxes, click submit, and wait for our ever-helpful community to chime in!

We hope this helps. Please continue to let us know what you decide and how you're doing.

--The Mods

Ringelle

SKR22 - My BS chased after extensive, widespread DCIS and MOST of it didn't show up on my mammogram or MRI. After two LX's that didn't get all the DCIS - I was told I needed a MX. There was a lot of factors that went into my decision to have a BMX (some physical, some emotional, some cosmetic). When it was all said and done, my BS said my choice for the bmx was agressive yet reasonable. I'm a week post op and so far, I have no second thoughts or regrets. One of the emotional factors for me was that I just didn't have the faith I needed in the MRI and mammography that my left breast was truly clear or that future imaging would catch a problem early enough. Turns out, my left was clear and so were the nodes on my right side. HUGE relief. However, I'm still glad I had both removed. As my surgeon said, this is a very personal decision and only you can make it. I just couldn't live with "chasing" after the unseen! Had either of my LX had clear margins, I probably would have felt better about the results. But here I am!

SKR22

Thank you

Wish someone can make the decision for me

Maybe after my next lumpectomy things wil become more clea

I_Spy

Mizmimi, I'm sorry about your sister. I'm glad you made a decision (LX), and it sucks you're now having to re-visit the decision considering your sister's diagnosis. I can tell you I am a couple of months out from BMX and I do not regret it at all. It is definitely major surgery, but once you get through that part it's over and you're on with your life. I am wishing you peace with your decisions, and remember my motto: this is not a choice between Disneyland or Six Flags; you're not going to be "happy" with your decision, you are just going to make the best decision for you.

I am in a position to speak about both decisions, because I made both decisions: first lumpectomy, done. Then with additional findings I chose BMX. What I have found on this site is some women want to push their decision on others in order to feel like they were "right" in their decision. There is no right and wrong. Each diagnosis is different, family history, medical history, bs choice, etc. Information is good; getting emphatic and using scare tactics is bad.

April485: you are actually arguing with me about my choice for BMX, and insisting that I become "aware" (afraid) of recurrence. My breast surgeon, at an NCI recognized comprehensive cancer center, has told me my chance of recurrence is less than one percent. As for your anecdotal evidence, I know someone who was in a terrible car accident and lived, even though she wasn't wearing her seatbelt; should I stop wearing a seatbelt? We can always find someone who had something happen to them that wasn't expected. It doesn't mean we should lead our lives afraid it will or won't happen to us, or make decisions based on anecdotal evidence. You don't know my diagnosis, my medical history, and even if you did you are not qualified to give me an opinion about my recurrence chances because you are not a doctor. What we should all be doing is supporting tough decisions, not arguing about them.

april485

"

I agree with Ruthbru as you never know what you personally will deal with from your treatment option until it happens. Also, you can still have a recurrence in your mastectomy scar that is invasive or just DCIS. Not just for LX, but for MX people as well. They cannot get every single bit of breast tissue when doing a MX so what is left behind can still grow a tumor unfortunately. Anytime we have a treatment, we have to be confident we did the right thing for us at the time.

Edited to add that sometimes, people who have a MX STILL need rads due to where the calcs are located. If it is near the chest wall, then rads will sometimes be recommended despite having gone through the surgery"

ispy, if you wish to argue about my post telling people to make sure they have all the facts, then feel free. My original post that you took as being MX shaming is above in this one. I don't see ANYWHERE that this is what I was doing. You are the one who is conflicted about your choice apparently or you would not be attacking me.

I do not plan to post again regarding this matter but whether it is "anecdotal" to the person experiencing the recurrence or being told they STILL need rads after having a MX to avoid this is another story. Apparently it is not anecdotal to them. I am always kind and helpful but you seem to want to make this adversarial which was never my intent. I just want people to know that MX is not always the choice they must make just like LX is not always the choice. Just the facts were presented on my end but you seem to want to defend YOUR personal choice even though I never attacked it whatsoever. I wish you the best in your life. If MX were the choice for me, I most certainly would have done so. I never want to influence anyone, just present facts as they exist. Take care.

MizMimi

Hey everyone.. OP here..... I'm late with my UPDATE but I decided to go with lumpectomy and NO RADS! Total reversal I know, but I decided that the DNA Oncotype test I had was convincing enough plus the negative genetic test we all have to take my chances with this conservative approach. I fell in the gray area for whether radiation would be beneficial and I chose to take my chances.

Just had my one year check with MRI and 3D Mammogram and all clear!