Found out I have IDC and scared silly

HoneyBeaw

Hello all

I have been lurking on this site for a while trying to learn and manage my stress, finally signed up today, now that I have some solid results and my emotions are more under control. These have been some of the darkest days of my life going from fear, depression. Im sure if your on this site you know what Im talking about

Sept 2016 I had a clean mammogram, Nov 8 I found a large lump upper left breast. I went to the Dr very next day and was told it was clogged ducts and wanted to start a round of antibiotic or we could do a needle biopsy, or just take the whole lump out. I found a BS and asked to have it removed, Dec 5th results came back at IDC mass was 2.69 cm.

Second surgery was scheduled for Dec 7th to get a bigger margin around the mass and to locate the Sentinel node . Was shot up with the dye but since my breast drain to under my breast bone they could not find the Sentinel node . Pet scan was then scheduled for a week out to find Sentinel node and to see if cancer had spread to any other nodes. .......Results came back today. There is no Evidence of cancer spreading anywhere and no evidence of it being in any of my nodes. BS said if I choose to just have a larger margin removed then most likely I would need Chemo and radiation.based on the size of the mass . If I choose to have a mastectomy then just chemo.

While all the test results have not came back yet should have Monday by then we should know what sort of Recpitors we are looking at .He feels that the stage is 2A

I feel that I just want to have the mastectomy, I don't want this crap coming back, I would just as soon have a double but BS expressed that a double might be very aggressive at this time .

I worry that it I just do the surgey for a larger margin then it could come back in the same breast..bigger and faster growing .. even with treatment ..

I worry that if I don't have a double it will repeat it self in my other breast.........I can not find any stats on that ........Still scared out of my mind but think I might beable to sleep tonight . Any help insite would be very much appreciated

....

Meow13

Getting an mx or bmx is not going to guarantee you won't get a recurrence. Beesie has a good post on choices. When you get the pathology back then look at treatment options. If you are hormone positive or not and her2 positive or not. I would not jump to treatment until you get more info on the tumor.

HoneyBeaw

Hi Meow

Do you happen to have a link to that post

Spookiesmom

I told my bs I wanted bmx. He mumbled something about chance of reoccurrence at 11%. I was insistent, he did it and I don't regret it. I'm 4 years out

barbe1958

Bea, I had a double mast because I had the same fear as you and it was my 5th biopsy in 30 years. I hated the fear every time and the call-backs. I was able to avoid chemo that way.

A mastectomy doesn't give you better odds at survival. It did mean that I could avoid aggressive treatment at the time, and as my surgeon said "Save the big guns for next time". Kind of surprised me he'd say that. But I recurred this year and I was able to just start on hormonals and radiation, avoiding an IV chemo. When/if this treatment stops working then I can move on to more aggressive chemo.

So, my surgery bought me 7 years. I did do radiation only after the recurrence, but my tumour was only 1 cm. You have a larger tumour and it seemed to grow pretty quickly. What did they say about the clear mammo in Sept? That seems pretty odd.....

Talk to the doctor that you trust and ask him what he would advise if you were his mother/wife. You might get a more compassionate opinion. A double mast gave me 7 years of total flatness and I loved it as my large breasts were causing bad arthritis in my neck and back. I've lived flat with no recon or foobs and felt great. for the 7 years. (I don't deal with a bra or prosthetic which I would have had to do if I just got one breast removed.)

Breast cancer doesn't seem to "move to the other breast" as we worry. In fact, if I got cancer in my other side, it would have been considered a new primary if the receptors had changed. That's like a brand new cancer and it's treated as new.

You have passed the worst part - the waiting for results and then hearing your name and cancer in the same sentence. Good for you! There is tons of information on these forums so once you know where you fit in you will be able to get the info you need for any situation. Rads? Go to the rads forum and find a thread starting when you are. Same as chemo. You will walk the journey that thousands of women have walked before. You are not alone.

Good luck, sweetie.

Luna52

I had two excisions on my right breast due to finding very small IDC tumor. DCIS too close to both margins although no more IDC at all.

My BS suggested a right breast mastectomy. I pushed for, and got, a BMX

Biopsy results were wide clean margins on the right side.. AND no sign of DCIS or IDC on the left side. I have only relief, no regrets about removing the non-diseased breast.

Meow13

https://community.breastcancer.org/forum/91/topics...

Look for Beesie post comprehensive list of what to consider mastectomy vs lumpectomy.

HoneyBeaw

Thank you ladies for your follow up. I have faith in my BS, he is amazing and I did ask him that exact question. What would you advise your wife, mother, sister and he told me exactly what I just told you . He feel the left one needs to come off but can not make that decession for me. He does not feel the right one need to come off. One reason is that my left breast had lots of very dense fatty area , where cancer loves to live and can not always been seen on a mamo My right breast does not have the same issue of being fatty and dense . Losing my breast is not a issue for me or my husband. The original margins he got were clear but he wants a larger clear margin. With where my mass was he had to go up under the nipple a lot and said that is always a worry spot and he likes to have larger margins.

My daughter went with us today and she marched in there wearing her big girls panties and asked every question in the book our BS answer every single one and was happy to do it . Everything he said at the time about not doing a double made sense at the time but as I set here thinking I just worry.

I do not understand a above comment that if I have the mx. in the left that I could stil get a recurrence in that same breast, not sure how that could happen.if the breast is doen........I guess I need to do some more research.

Meow13

Beaw, I hope you are getting a breast MRI, it should be able to give you a better idea of the extent of cancer. If you have dense breasts the mammogram could be almost useless.

Yes you can get a recurrence in the area of the breast you had removed. Please get as much information as you can before you jump into a decision.

Please read through Beesie post, once you have a mastectomy you can't go back. Also I would get a second opinion it never hurts to do that.

Meow13

About Barbe saying she was sick of biopsies. Well I just had to have one on my reconstructed breast. It turned out to be nothing but a mastectomy is not a guarantee to get all breast tissue. People get recurrences in the chest wall or mastectomy scar with or without reconstruction.

HoneyBeaw

Yes from this point on I will only have MRI or ultrasounds , after I found the mass they pulled all my test for the last 10 yrs and said there had been no change in any of the mama in all that time, which I find very scarey that it got that big 2.69 cm and no one see it at all . I just am very thankful my mother always preached to check the boobies. My BS also told me that he tells every woman to check there breast just like they do there face, they need to stand in front of the mirror notice every hair, wrinkle, dimple and dot. Check them arms up, arms down and really pay attn. to any change . Makes sense we notice every wrinkle on our face but how often do we really check our breast that well

barbe1958

Meow I didn't at any point say I was sick of biopsies! I said I understood the fear. In fact, I've had 5 more biopsies in the 7 years from my initial breast cancer diagnosis. The last one found my recurrence which was deep into my chest wall and not in breast tissue at all. Breast cancer does not just recur in breast tissue.

I really hate it when people don't read my posts properly. In fact, sick of it! Don't quote me if you can't even read properly. Please.

Meow13

sorry Barbe, didn't mean to offend. I wouldn't blame you a bit for being tired of biopsies. But many people think if they get a mastectomy ,they won't have to worry about tests. I understand your defensiveness after being hammered by others sorry I did not read your post closely.

Anonymous

I might also add that no matter what, a MX (single or BMX) doesn't guarantee that the surgeon gets all the tissue. Therefore, even without boobs we can recur in the skin and in the little bit of tissue left at any time. I know. It's maddening. BMX doesn't guarantee 100% success or protection.

Choices for tx and surgery also depend on the subtype of bc. I had ILC, not IDC, and ILC has a tendency to be multi-focal (both breasts). When I had my BMX two years after dx, the pathology reported mild hyperplasia (pre-cancer) in the good breast, which was never reflected despite the 2 MRIs I had on both breasts. I had no indication there was anything going on in that boob at all.

I dislike the sensation loss in my breasts now--basically I feel dead above the waist, but I'm glad I got out as much potentially problematic tissue as my surgeon could.

Claire

Meow13

I had one ILC and ond IDC with lobular features. I asked about bmx because of statistics on both breasts with ILC my mo said no you are ok the AI drug will protect the good breast and we will watch you closely. I am glad because 5 years later it is still clean as a whistle. But being extremely dense breast tissue radiologists have told me they are happy I do a regular MRI as well. Now there is a contrast mammo they are recommending for dense tissue. I didn't have that this time maybe next.

Also I still have mammogram and MRI on the reconstructed side, insurance pays even though the odds have been reduced.

barbe1958

That's for validating my feelings Meow.

It's good that others are confirming that a mastectomy does NOT give you an advantage over other options. My tumour was in my left breast but they kept saying right side was of concern! I found out after my BMX that my right side had calcifications forming that would have developed into full blown cancer as well.

Keep us posted on your process Bea.

daria7r

Really difficult decision. Maybe you could have a single followed by frequent scans to detect a new cancer in the second breast at an early stage. But as you say the worry might not be worth it. Don't know if it helps but I found this "second primary breast cancer (diagnosed at least three months from the primary tumour diagnosis and with different primary location and morphology) occurs in 2–6% of the patients" in this paper "Survival after Locoregional Recurrence or Second Primary Breast Cancer: Impact of the Disease-Free Interval". Good luck

M0221

Beaw,

I chose a BMX because I feared a reoccurrence in my other breast. I explained to my surgeon that I had prayed about it and that for my own peace of mind I did not want to worry every morning in the shower doing an exam that I would find another lump. My breast surgeon said quality of life was a very important factor in choosing what type of surgery was right and that every individual was different. He was extremely supportive of my choice for a BMX. I am 3 months post BMX and I start chemo this Wednesday. I have healed well and have ZERO regrets for the choice I made.

Do what is right for you. No one can make that decision for you. Listen to your gut.

Wishing you all the best

EastcoastTS

As I'm facing the choice of mx or lump, I have what may be a silly question. As Claire mentioned, even mx does not negate future issues. So -- how do you monitor if you have a mx? You have less tissue but how would they find something?

I have dense breasts and ILC. MRI last week okay except for the primary noted. (Though they did see an enlarged node but hoping for reactionary/biopsy on that. We shall see.)

More appts next week but not sure what to do. Ugh. I feel I may want mx but scared because seems extreme even to me.

exercise_guru

EastcoastTS…

I understand because I was in a similar situation before they did genetic testing. It might be worth getting a bit more information.I was able to meet with a plastic surgeon to get more information and better understand my situation. That might be helpful for you.

If you have someone that you can reach out to that has experienced a Mastectomy its helpful to just be able to hear their story. the local social worker might be able to help with that.

mustlovepoodles

Eastcoast, I had a BMX last year. My BS has seen me every 4 months since then and did a full chest ultrasound each time. Now I'm just seeing her every 6 months--not sure how long, but maybe just another year? I'm not really too worried about recurrence, even though my PR- BC is considered more aggressive. Either it will recur or it won't. I'm not wasting time on that stuff