Count Me In Too...

rockhopper77

I am new here also - just found this site a few days ago. I am nearly 52yo. I have always had fibrocystic breasts and was grateful when digital mammography became available. I previously had 5 other biopsies and/or lumpectomies, all benign, plus my mother had Stage 2 BC at age 45, estrogen-positive, mastecomy, node removal, chemo & radiation, and there are a few other relatives with BC on her side.

I had microcalcifications show up on my mammogram in 2005. At that time a stereotactic biopsy was recommended, but we could not get two disecting views on the mammogram to find the place to biopsy, so nothing was ever done. I had microcalcifications show up on my mammogram this February. Stereotactic needle biopsies were done on both sides. Precancerous cells were found on the right side so I had a lumpectomy. Went back for my recheck after surgery and my surgeon said they found cancer cells - I had Stage 0 DCIS. Saw an oncologist who said I needed 25 radiation treatments, it would cut my chances of recurrence in half. Or Tamoxifen which would also cut my chances of recurrence in half. I told him I wanted a double mastectomy. Because of my history and family history, I was certain I would be back in that chair again and that next time the news would not be so good. I decided to have surgery this fall.

I also had an MRI after the biopsies, along with another mammogram end of August because I didn't want any more surprises after surgery, and neither showed anything new. I had my surgery on October 21, a little over three weeks ago. My pathology report after my surgery said I had another area of atypical cells in the same breast, which is why I had the biopsies to begin with. I was a little surprised that did not show up on the mammogram. And I was even more convinced (as if I needed convincing) that I had chosen the right path of treatment.

Although I was certain this would happen to me at some point in my life, after so many years of going through the biopsy stuff and having negative outcomes even that became relatively routine. I was still in shock that day when the word cancer came out of my surgeon's mouth.

I chose not to have recon - something my surgeon was happy about because it turns out I have thin skin. The skin has been dying off around my incisions, and new skin has started growing. It is pretty much healed up on my right side, but the left side looks bad. I put antibiotic cream on once a day, and the surgeon says it is healing nicely (I'll take her word for it). I have been wrapping constantly, but have finally started pinning the pad to a cami for the day to get a breather.

I had my second and last tube out last Monday, which brought new trauma. By night the area above where my breast had been (where the tube was) had swollen up a lot and was red and very tender to the touch. The swelling has gone down, but it is still very sensitive, and I have upped the pain pills again because of it. It worries me, but I do not have a fever, and I have another appointment Wednesday. They will probably drain both sides again, and hopefully do something about this painful swelling. (Anyone else have this problem?)

I have also seen some discussion on HER2 - is this something that should have been covered on my pathology report? I did not see any mention of it. It is frustrating not to know what I should be asking or looking for... and frustrating at the lack of information I was sent home with of what to expect for a post-op mastectomy.

I am very glad I found this network. It has been hard for me to feel like I am a cancer survivor - by the time I was told I had cancer, I was also told that the cancer was no longer in my body, and it was a very surreal experience. I wasn't sure what I was supposed to feel. Only when I sat across from the oncologist and he said I needed radiation did that cancer diagnosis actually sink in.

I appreciate anyone who has actually read to the end of this "mini novel". I look foward to sharing with the wonderful women on this site. Your courage and strenth and genuine concern for each other is amazing and wonderful. I couldn't be in better company.

cinnamonsmile

The main consensus is that
The main consensus is that in pure DCIS, the status of Her2 really has no bearing on treatment for it. ER/PR status does.

I am truly sorry that despite having the mastectomy you still need radiation. If the margins of "clean" areas are not wide enough, radiation is sometimes required after a mastectomy.

I, too, had DCIS in one breast and PASH, a benign breast tumor in the other, and had a double mastectomy with no reconstruction.

I wish you the best and keep in touch and let us know how you are doing. Hopefully, one of the other ladies can help you with what is wrong, but ultimately, it is up to your surgeon to diagnose you. Please ask and get answers you understand and don't let him/her get away with brushing you off.

Lynn Smith

Welcome I understand
Welcome I understand what you are going through.I've had a similar siutation.I was 20 when my first 2 tumors were found.Just after the birth of my oldest son.Of course being young and having a mother that was dx at age 21 I thought it was cancer and had spread with 2 tumors.I was told by my doctor the breast might need to be removed.Well I still had it.Tumor was benign but being young I thought they just left the breast because I had 6 months to live.My mom being a survivor always seemed depressed after my surgery.A big reason I thought it was cancer. Just to young and naive.

Years went by then my husband felt a tumor.I went to the doctor and another benign tumor.A few more years went by.I found a tumor.It also was benign.These were just by chance because I didn't always do self exams.Kinda slack on it those years.Did seld exams hit and miss.

A few years later my doctor found a cyst.Said he would watch it.For years I went in for mammos.Always fine.Cyst wasn't growing.I missed just 1 year without a check up.That year the doctor said the cyst had become bigger.He was concerned and walked around the room with his hands clasped in prayer.He did a biopsy.Benign.That was then a wake up call.Never again would I miss a appointment.

So from 20 years old into my 60's I only missed one check up or mammo. I Started very young.

In 2009 I was dx with Stage 0 DCIS tumor was 1/2 centimeter.No chemo or radiation but take tamox for the next 5 years.My breast surgeon asked at a doctor's convention what treatment should be done.I talked to 2 of my other doctors they said it was OK because they see patients with my dx and they are doing fine.

My cancer surgery was a delayed thing. My doctor took awhile ordering a biopsy.When I got it done I was called in the next day saying I had DCIS.Surgery 8 weeks later (a lumpectomy) came.As I was being prepped and the cancer tumor marked they stopped to tell me another tumor was found.They needed to mark that one.After the surgery that one was benign.It was a shock to have another tumor found that soon.

Two weeks later I went to see the doctor.He was happy with the surgery but the bad news he wanted to do a margin check.Wanted to make sure ALL the cancer was gone.I agreed. Just 2 days before the second surgery I felt what I thought might be fluid.Didn't call the doctor I was going in for surgery in 2 days.Another benign tumor.

This July was my 2 year mammo and survivorship.A tumor was found.Another delay.Finally action was taken.I got the needle biopsy. Tumor was benign but it can wait. I am awaiting a appt with a new breast surgeon in a couple weeks to have it taken out.I had been with the other group for 44 years retiring 2 doctors. Likely the tumor will be out in January.I at least know the results.

I haven't made a decision for a masectomy.I have 2 friends that are survivors.One 16 years and the other 6 years.One Stage 3 and the other a fast growing cancerous tumor.Both of their doctors said that a masectomy or a lumpectomy can have same results.Both are doing fine.

I am in between on what to do.I am almost 65 years old.Will be in March.My mom was dx at 21 like I mentiond and back then breast were removed.She lived 60 years.Died at age 81.My niece is a 6 year survivor dx at 30 with a double masectomy.One a cancerous breast, a year later a pre cancerous tumor in the other berast which led to the second mascetomy.

Like you this has been a roller coaster.Alot of similarities with our cancers.

Sorry so long but wanted you to know how similar our dx was and the family history on our mother's side of the family.

Lynn Smith

rockhopper77

cinnamonsmile said:

The main consensus is that
The main consensus is that in pure DCIS, the status of Her2 really has no bearing on treatment for it. ER/PR status does.

I am truly sorry that despite having the mastectomy you still need radiation. If the margins of "clean" areas are not wide enough, radiation is sometimes required after a mastectomy.

I, too, had DCIS in one breast and PASH, a benign breast tumor in the other, and had a double mastectomy with no reconstruction.

I wish you the best and keep in touch and let us know how you are doing. Hopefully, one of the other ladies can help you with what is wrong, but ultimately, it is up to your surgeon to diagnose you. Please ask and get answers you understand and don't let him/her get away with brushing you off.

no radiation
I may have misspoken, but the oncologist said I would NOT need radiation if I had a mastectomy. That is the reason I decided to do the bilateral, because I knew if I went through the radiation there was still a very good chance I could be going through it again and worse.

I am not familiar with ER/PR but I will do some research. There is so much I am finding out that I do not know.

Thank you.

cinnamonsmile

rockhopper77 said:

no radiation
I may have misspoken, but the oncologist said I would NOT need radiation if I had a mastectomy. That is the reason I decided to do the bilateral, because I knew if I went through the radiation there was still a very good chance I could be going through it again and worse.

I am not familiar with ER/PR but I will do some research. There is so much I am finding out that I do not know.

Thank you.

I was er/pr positive,
I was er/pr positive, meaning the cancer used estrogen and progesterone to grow. Since I had a mastectomy, some members of my medical team were opposite in what to do. Since all the cancer was contained within the milk ducts, they should have been all removed with the mastectomy. There are drugs to take that stop the body from using the hormones, kind of in a nutshell, which doesn't allow the cancer to use it to grow.
My breast surgeon is super aggressive and wanted me to take one of those drugs to stop the cancer from using hormones to grow. But the medical oncologist, said that since all milk ducts were removed there would be no need for the drugs.
It turns out that I have a blood clotting disorder which would stop me from taking it anyway.
I am not sure, but I know for me, I was told that I can not take any hormones for menopause or use birth control that adds those hormones to the body, even with the mastectomies.
I could have read your post wrong too, lol, sorry for the confusion about the radiation.

rockhopper77

cinnamonsmile said:

I was er/pr positive,
I was er/pr positive, meaning the cancer used estrogen and progesterone to grow. Since I had a mastectomy, some members of my medical team were opposite in what to do. Since all the cancer was contained within the milk ducts, they should have been all removed with the mastectomy. There are drugs to take that stop the body from using the hormones, kind of in a nutshell, which doesn't allow the cancer to use it to grow.
My breast surgeon is super aggressive and wanted me to take one of those drugs to stop the cancer from using hormones to grow. But the medical oncologist, said that since all milk ducts were removed there would be no need for the drugs.
It turns out that I have a blood clotting disorder which would stop me from taking it anyway.
I am not sure, but I know for me, I was told that I can not take any hormones for menopause or use birth control that adds those hormones to the body, even with the mastectomies.
I could have read your post wrong too, lol, sorry for the confusion about the radiation.

Mother ER positive
I know my mother's cancer was estrogen positive, and her doctor told her to NEVER take hormones or anything with soy in it. At that point, I decided that I would never take hormones either.

My surgeon was surprised with my decision to do the bilateral, as she said it was a low-grade cancer. But I said "it's a cancer." To me, low-grade or not didn't matter. I've been with too many friends who have gone through radiation and chemo and I don't want to be there if I don't have to. Besides... I don't need those things (boobs) anyway! She did say that I should not take hormone replacement therapy though, even after the surgery, because I asked her.

I do have more questions for the surgeon when I see her, and I am going to ask her about the ER/PR because I don't see anything about it in the pathology report.

rockhopper77

Lynn Smith said:

Welcome I understand
Welcome I understand what you are going through.I've had a similar siutation.I was 20 when my first 2 tumors were found.Just after the birth of my oldest son.Of course being young and having a mother that was dx at age 21 I thought it was cancer and had spread with 2 tumors.I was told by my doctor the breast might need to be removed.Well I still had it.Tumor was benign but being young I thought they just left the breast because I had 6 months to live.My mom being a survivor always seemed depressed after my surgery.A big reason I thought it was cancer. Just to young and naive.

Years went by then my husband felt a tumor.I went to the doctor and another benign tumor.A few more years went by.I found a tumor.It also was benign.These were just by chance because I didn't always do self exams.Kinda slack on it those years.Did seld exams hit and miss.

A few years later my doctor found a cyst.Said he would watch it.For years I went in for mammos.Always fine.Cyst wasn't growing.I missed just 1 year without a check up.That year the doctor said the cyst had become bigger.He was concerned and walked around the room with his hands clasped in prayer.He did a biopsy.Benign.That was then a wake up call.Never again would I miss a appointment.

So from 20 years old into my 60's I only missed one check up or mammo. I Started very young.

In 2009 I was dx with Stage 0 DCIS tumor was 1/2 centimeter.No chemo or radiation but take tamox for the next 5 years.My breast surgeon asked at a doctor's convention what treatment should be done.I talked to 2 of my other doctors they said it was OK because they see patients with my dx and they are doing fine.

My cancer surgery was a delayed thing. My doctor took awhile ordering a biopsy.When I got it done I was called in the next day saying I had DCIS.Surgery 8 weeks later (a lumpectomy) came.As I was being prepped and the cancer tumor marked they stopped to tell me another tumor was found.They needed to mark that one.After the surgery that one was benign.It was a shock to have another tumor found that soon.

Two weeks later I went to see the doctor.He was happy with the surgery but the bad news he wanted to do a margin check.Wanted to make sure ALL the cancer was gone.I agreed. Just 2 days before the second surgery I felt what I thought might be fluid.Didn't call the doctor I was going in for surgery in 2 days.Another benign tumor.

This July was my 2 year mammo and survivorship.A tumor was found.Another delay.Finally action was taken.I got the needle biopsy. Tumor was benign but it can wait. I am awaiting a appt with a new breast surgeon in a couple weeks to have it taken out.I had been with the other group for 44 years retiring 2 doctors. Likely the tumor will be out in January.I at least know the results.

I haven't made a decision for a masectomy.I have 2 friends that are survivors.One 16 years and the other 6 years.One Stage 3 and the other a fast growing cancerous tumor.Both of their doctors said that a masectomy or a lumpectomy can have same results.Both are doing fine.

I am in between on what to do.I am almost 65 years old.Will be in March.My mom was dx at 21 like I mentiond and back then breast were removed.She lived 60 years.Died at age 81.My niece is a 6 year survivor dx at 30 with a double masectomy.One a cancerous breast, a year later a pre cancerous tumor in the other berast which led to the second mascetomy.

Like you this has been a roller coaster.Alot of similarities with our cancers.

Sorry so long but wanted you to know how similar our dx was and the family history on our mother's side of the family.

Lynn Smith

You have been through a lot!
You have been through a lot! You certainly can understand where I'm at. I have had a fear of getting breast cancer for a long time... it's just that with so many negative biopsies, after a while it's just routine. When I was told they found cancer cells that all came back. As soon as radiation was introduced to the picture, I told them I wouldn't do radiation, and to just cut them off. I have had enough lumps taken out here and there, and I would be a basket case after this going through mammograms again if there was anything suspicious in there. I hope I did the right thing, who knows, but I don't have any regrets about it. And I have a very strong and positive husband standing beside me on all of it.

Although I know there can be breast cancer in males, after all this I am glad that I only have a son and not any daughters. I think his chances are a lot better than a daughter's would be.

I know you will make the right decision for youself, and it sounds like you have some supportive friends there with you. It would be so much easier if this was all cut and dried, wouldn't it? In the end, along with our decisions, it's the people we gather 'round us that get us through.

Sending good thoughts and best wishes your way... and a few prayers too. I will be looking for updates from you.

Thank you again for your support.