Due For Mammo, But Thinking About Prophylatic Masectomy

[RobinP]

Well, It's Time For The Dreaded Yearly Mammo, Although, RELUCTANT TO GET IT. The Reason, The Last Time I Had A Mammo Was A Disaster. I Went To Boston, Six Hours Away, For The Best Experience At Dana Farber Cancer Center, But The Tech Was Terrible. She Had To Repeat The Test, So I Got Double Radiation Exposure, Which Was Really Quadriple For Me Since I Have A Breast Implant That Requires An Extra Photo Exposure To View Behind The Implant. (GOT THIS IMPLANT ONLY To Match The New POST MASECTOMY BREAST Reconstruction SIDE). Well, Anyway, Beside All The Radiation Extra Exposure Due To The Implant CONCERNING ME, I Have Little Faith In Mammos Since My Breast Cancer Was Not Detected By Mammogram When I First Presented With A Breast Lump, Which Lead To A Fifteen Month BREAST CANCER Misdiangosis.

I'm thinking about having the Remaining Breast removed And Having The Implant Taken Out Of The Reconstructive Side due to my concern about mammograms. At This Point In My Life, I Don't Care About Boobs...in Fact I Hate Boobs- Those Dam Things That Cause Breast Cancer. DO YOU GUYS UNDERSTAND? ANYWAY, Has Anyone Gotten Double Masectomy Here And Feel Good For Having Done That? THANKS FOR THE COMMENTS AND HELP.

[PinkGirl]

Hi Robin
I am also contemplating the same thing. I had one breast
removed and did not have reconstruction. I wear a prostetic.

It is very difficult to have one breast. I am thinking of another
mastectomy. For me it would be easier this way. I would wear
two prostetics and have the option of not wearing any. Right now
I am a pretty strange sight when I don't have it on.

I agree ... boobs aren't boobs anymore when they can kill you.
I regret not having both removed in 2005.

[Vi Schorpp]

It is time again for my mammo and I know exactly what you're talking about. Last year when I left my mammo visit I swore I would make a decision by the time of my next visit. I haven't.

I am left with red marks from the compression on the plate for a long time after the mammo is over. Frankly, the one reason I still haven't made a decision is that there is still sensation in the remaining breast and I think that contributes to some quality of life. Maybe not enough to keep the breast, but something to be considered. With other qol issues like vaginal atropy, sensation cannot be underrated in my eyes.

[Mary Jo]

Hello Ladies.....

I can speak to this. At the time of my diagnosis my only option was right breast mastectomy because my tumor was so large (4 cm) unless I wanted to do chemo first to shrink the tumor. I did not want to do that and knew, for me personally, mastectomy was the only way to go. As a matter of fact, at that time, I wanted a bilateral mastectomy - the left of course being a prophylactic. My breast surgeon talked me out of that, although, she was willing to do it and understood my reasons. But, I let her lead me and opted for just the right breast. After my 8 cycles of dose dense chemo and my 28 radiation treatments it was mammogram time for my left breast. Yup, you guessed it.........a suspicious area was found. This suspicious area was an area of micro-calcifications near the chest wall that they said had changed since my mammo 6 months prior. So, now I had to go through a stereotactic biopsy. You can only imagine the fear and anxiety I had over this - especially at that point in my journey - oh my gosh - I cried through the entire stereotactic biopsy because I couldn't believe we were talking possible cancer again. It absolutely floored me. The part that made me most fearful was the constant chattering in the biopsy room of "we need to get more in the picture - it's right near the chest wall" - the chest wall - the chest wall - the chest wall - that's all I could hear and that scared the living daylights out of me.

SO........................thankfully, the biopsy results were benign HOWEVER at that point (even before that point) I knew, beyond a shadow of a doubt, that breast had to go. There was no way I was going to wait until that area of calcification turned into breast cancer (and I was very fearful that it would) and there was no way I was going through that "hell" every 6 months. My breast surgeon didn't even balk when I told her I wanted a prophylactic mastectomy and said if she were me she would do the same thing.

I never, ever regretted that decsion. Ever. When the pathology results of that mastectomy came back showing no cancer at all anywhere - not even any atypical hyperplasia cells - I was more relieved yet. Some people asked me if after I heard there was nothing if I regretted my decision I said "absolutely no way!" If anything, it gave me even more peace of mind.

I was breastless for almost 3 years and just recently had bilateral DIEP reconstruction. It was time for me and I felt ready to go ahead with this surgery. However, that in no way means that I felt regret over losing my breasts. I felt very happy the "originals" were gone. Very happy. The originals only gave me problems and I was happy to see them go. Living with none was really ok with me - I never felt like less of a woman or that I needed boobs to feel whole, but, after 3 years I felt I wanted them again BUT this time I was getting new ones....made from my abdomin - no breast tissue. They turned out beautifully and I couldn't be happier. Hope these new girls serve me a bit better than the last 2.

I hope you can come to a decision that brings you peace.

Mary Jo

[Chelee]

Robin, It was an easier decision for me then I thought it would be. Especially the 1st year when it was time for a mammo on my only remaining breast. I was stressed worrying about then finding cancer in that one. Did not want to go through it again. Plus prior to the mammo I was finding a thickening on my breast that concerned me?

So for me personally...I took in consideration that I am her2, 3+++, stage IIIA, with 5 positive nodes...was not able to have radiation. So when I went for my mammo and had to wait for the results "again" it was the deal breaker! They said everything was fine except they see what looks like two lymph nodes in the breast area they want to keep an eye on...and two more lymph nodes in the axilla area. That was it for me...I wanted IT gone. I talked to my surgeon and he thought it was a very reasonable request and said he would do it.

After I had the prophylatic masectomy my surgeon came back and told me that breast was FULL of hyperplasia. I forget his exact words but he said it was one of the worse he has seen. Although he explained that didn't mean I would of gotten cancer but in time it was a possiblilty. Its been well over a yr since my prophylatic mast and I am happy with my decision. No more mammo's or worrying about them missing something on my films. Like you I also didn't like the added exposure to radiation. They were always taking ONE more view it seemed. I was fitted with two prothesis which works for me. Good luck in whatever you decide.

Chelee

[Petesmom]

Hi Robin,

I know exactly how you feel. I had a recurrence in my right breast 3 years ago and had a mastectomy with no reconstruction. I don't know why I didn't have the other one removed at that time. I hate going for the mammo and waiting around for a week to hear from the surgeon. It is just awful. I still think about having the other breast removed. I also find it difficult with just one breast. My bra strap rides up on the mastectomy side and I feel out of balance. Anyway, I sympathize and do think still about having this surgery every year when my annual mammogram rolls around.

Petesmom

[BonnieR]

I really identified with what Mary Jo said. When I was diagnosed following a biopsy and was told that the other breast looked "suspicious" and would also need biopsy and at the very least, alot of future monitoring, I opted for a bilateral mastectomy. I just did not want to be constantly waiting for the other shoe to drop.. that might not have a scientific basis, but it is how I felt. My surgeon is usually more conservative but she agreed.. It turns out not to have had cancer but, like Mary Jo, I have absolutly no regrets.

[Barbara2]

I say "me, too," to most of the above. Mastectomy, followed by 2 biopsies in the remaining breast, the possibility of more years of uncertainty with the remaining breast, and the concern of how to get accurate testing when the testing had failed me in the past when the (very large) cancer could not be seen... I was so ready to have that second mastectomy which was about 1 year after the first.

I wear a bra when I am out and about, but around home it is so nice to go without it. I was well endowed but chose to go with a much smaller version of prostetic and am very satisfied with the results.

[G. Ann]

Hi Robin,
Very timely question for me. Ultimately, it is your decision and what you feel comfortable with.

My recent story...last May had mammo which showed change in microcalcifications and area of concern. Called back for four more digital pictures. Radiologist couldn't tell for sure so referred me for stereotactic biopsy. Two areas showed up--atypical lobular and atypical ductal hyperplasia. Excisional biopsy recommened in July. After talking with my general surgeon and plastic surgeon in August, I'm scheduled for mastectomy on right side and beginning reconstruction (expanders).

I have no hesitation over the mastectomy. Like you, I've had many scares in four years (several biopsies and ultrasound biopsy). Enough is enough. My concern is the reconstruction and if that hinders any follow-up check-ups as they can't remove all breast tissue and the chestwall issue. My HMO, Kaiser, does not routinely do MRIs. Also, my age, 62, is part of my reconstruction concern, but none of the three doctors consulted think that's an issue. I'm very interested in your feelings about the implant.

I'm wishing you a good decision. I've heard if you have a sense of peace once you decide, then you're on the right road.

[juanita]

It has been 4 years since my lumpectomy and I have been seriously considering a masectomy. Some of my friends think I'm insane, but others say go for it. Gotta see what insurance would do.

[Sheila]

How timely
This is something I wanted with my original surgery....actually looked in to getting prophylactic bilaterals before my original diagnosis...due to family history and repeated biopsies. Before I made the decision, I was diagnosed....I knew that I would be having a mastectomy, so I requested a prophylactic one the remaining breast...the insurance denied it. It was too expensive to pay out of pocket, can't understand why they will cover reconstruction, but not a prophylactic mastectomy....so I wait, for the other shoe to drop.
I am so tired of insurance companies dictating treatments!!!!

[Joan M]

I've had two core biopsies on my remaining left breast since my surgery. Although I know they're looking extra carefully because of my bc history, when I had the last biospsy, which was several months ago, I seriously considered speaking with my onc about a mastectomy. But then when I discovered the lung nodule had recurred, I became sidetracked.

Also, I had immediate DIEP flap reconstruction when I had the mastecomy in 2003 and would not be able to do that again if I had the remaining breast removed.

[Jackie07]

Hi Robin,

I know how you feel. It is a decision you have to make. I only wished I had not been talked out of the double mastectomy when I was first diagnosed in 2003. But I wonder now (after reading others' postings) if doctors are basing their advice partially on insurance - they can't justify it until we get a recurrence?

Another thing worries me is that so many breast cancer doctors don't know how bad Her2 bc is. My surgeon said it confidently after the operation for recurrence that I would have 1 year of Herceptin which sort of gives us some kind of insurance. But then I could not continue Herceptin after 22 weeks.

Proving my doctors wrong does not give me any triumpant feelings. The statistics says that 50% of lumpectomy would recur. I feel that a big chunk of that 50% are our Her2 sisters.

[RobinP]

Thanks for everyone's opinion on this topic. I am going to copy the responses here and mull over my decision until the right answers settles in.

[Diane H]

Hi Robin, wishing you a quick decision that is right for you. I know if any recurrence is in my future I too want to be done with it and have masectomies. It is an individual's decision to make, and there is no right or wrong answer.
Now Jackie posted that 50% of lumpectomies recur, but studies show that in general the sucess rate is the same for both procedures? If anyone has any clarification on this that would be great....

[Becky]

http://www.medicine.ox.ac.uk/bandoli...07/b107-2.html

http://health.discovery.com/centers/...astectomy.html

http://clinicalevidence.bmj.com/cewe...2/0102_I19.jsp

Attached are various studies and an interview with Susan Love on the effectiveness of local recurrence for masectomy (radical) vs lumpectomy with and without radiation. There is a 10 yr comparison and a 20yr follow up comparison with NO difference between the two and the rate is low 5% - 10%.

However, I will make a personal comment that I am sure masectomy is more beneficial in CERTAIN cases - large tumor or lots of nodes. Perhaps a woman might be recommended masectomy on those terms and refuses so she takes neoadjuvant chemo to shrink the tumor and reduce the nodes and perhaps the local recurrence risk is greater in THAT case. These attached studies include overall survival and distant recurrence rates between the 2 surgeries too. All good for either procedure. Susan Love's interview is good too and she makes a comment about propholactic masectomy (of the unaffected side too - she recommends it for BRCA+ but not overall).

Cheers!

[schoolteacher]

Sometimes I wish I would have had my other breast taken off in April when I had the right side. I have been thinking a lot about this topic too. In June, when I had my MRI, I was told there was a 3mm place in my left breast.

I am glad to read everyone's post on this topic.

Amelia

[RobinP]

Thanks, Becky, for the Susan Love comments. I respect her opinions and know she is a leader in her field. I wish her new intraductal approach for breast assessment, where nipple aspirate fluid is assessed for pre cancerous and cancerous changes, was available,as it is a much safer method without radiation to assess the breast.

[Diane H]

Thanks Becky, you always come through...
Hugs, Diane