Dis Breast Cancer Survivors Part IV - GAGWTA

[Feralpeg]

TMM, That was not the news I was hoping you'd hear. Know that you are not alone in this. We've all been there and are more than willing to offer any support possible. I honestly believe the not knowing and waiting to start treatment are the hardest. You'll get through this!

 

[The Mystery Machine]

TMM, That was not the news I was hoping you'd hear. Know that you are not alone in this. We've all been there and are more than willing to offer any support possible. I honestly believe the not knowing and waiting to start treatment are the hardest. You'll get through this!

Thank you very much.

I am on my way out to go and tell my parents. They do not know yet.

Did anyone on this thread get a double mastectomy?

 

[The Mystery Machine]

Yes, feel free to ask questions here or pm me as well. I also had widespread DCIS and a small area of invasive ductal carcinoma, mastectomy on the affected breast in 2004 along with node removal, free tram flap reconstruction in 2006.

I agree with Pea N Me, treatment options are very good these days.

Laurie

Oh good. It is just hard to PICK a SURGEON.

I have to say this is a great place to vent that is not family, you know what I mean.

 

[Pea-n-Me]

Oh good. It is just hard to PICK a SURGEON.

I have to say this is a great place to vent that is not family, you know what I mean.

It was an option, but I chose breast conserving surgery for a few reasons. It's certainly an option for you, but it might be overkill. Do some research, and talk to your breast surgeon about it before you decide. I was reading a study the other day that I'll see if I can find again and post. Remember that the type of surgery you choose here doesn't determine whether you live or die from this disease. Breast conserving surgery has been proven to be as effective in the long term as mastectomy.

 

[Pea-n-Me]

Here it is:

https://www.washingtonpost.com/news...ival-rates-for-women-with-early-stage-cancer/

http://www.npr.org/sections/health-...etter-than-lumpectomy-for-early-breast-cancer

This was the case when I was choosing what type of surgery to have, too, in 2003, but it has been reaffirmed and is more well known now. I think the "Angelina Jolie" affect has influenced widespread beliefs, but when push comes to shove, it may not be more effective and it is certainly more extensive surgery. But ultimately, it's up to each individual to decide. Just do your research first to make sure you're fully informed, and see what your surgeon(s) recommend.

 

[Feralpeg]

Did anyone on this thread get a double mastectomy?

I've had both breasts removed, but not at the same time. I had my left removed in 1982. Thirty years later, the cancer returned in the scar area of my original mastectomy. I had a left chest wall resection followed by chemo and radiation. Once I finished my treatment, I had the other breast removed. Why take the chance?

I know this all sounds overwhelming, but knowledge is power. Please ask if you have any questions.

 

[Pea-n-Me]

Why take the chance?

Since there are a lot of people reading here, and people who are new, I'll answer this.

• Because it's more expensive, and with out of pocket costs soaring today, cost could be a consideration for many
• Because it takes a longer period of time, with more follow up
• It's a much more extensive surgery, sometimes involving both the chest and the abdomen
• Because there can be more complications, more pain, more procedures
• Because people may have limited sick time and/or time off from work, etc
• Because people may have limited supports at home
• Because people may have young children that need them to be functional sooner, and that has to be taken into consideration, especially if chemotherapy and/or radiation are going to be undergone also
• Because it's not going to "save your life", necessarily; certainly not more than breast conserving surgery
• Because breast conserving surgery with radiation has been found to be more effective now at keeping the cancer away and prolonging survival time

I do think that a "prevention" situation is different than a cancer diagnosis situation.
And again, each person has to make the decison for themselves, but they should have all the facts before they choose.
As stated in the first article, a lot of people are fearful and think that mastectomy/double mastectomy will be the "best" choice. When people have a mastectomy, they often don't do radiation. It looks as though they're thinking (though more studies are needed) that radiation may just be the piece that's making the difference in keeping the disease away, as it kills those residual, miniscule pieces of cancer that may still be floating around the breast and chest area that can grow later.

 

[Feralpeg]

Pea, You're right. Have a preventative mastectomy is not the right answer for everyone. I think it was for me, but I am 63 and have had cancer twice. I would never judge anyone's personal decision.

 

[The Mystery Machine]

Good things to think about guys. Thanks

One of my dh's coworkers died from the radiation treatments and not the cancer. That is a bit unnerving right there.

 

[Straitlover]

Hey TMM! Sorry to hear about your diagnosis. I don't check in here much (trying to get on with things???), but I did want to respond to you.

I had a double mastectomy in July 2014. Under regular old breast cancer circumstances i might not have but here's why I did:

1) I had a rare tumor that can come from intraductal papilomas. I had already had one papiloma removed form my non-cancer side ( and one form my cancer side) and had another one that needed to come out.
2) On my cancer side, I'd had a biggish papiloma removed in late 2013. If I did a lumpectomy and radiation, that side would have been way smaller than the other side (it was already smaller before all this).
3) My mother was going through cancer treatment, and I was driving back and forth every weekend and sometimes during the week taking care of her (150 miles RT form my house). I didn't have time to deal w/ six weeks of radiation treatments.
4) I was the third sibling in my family to be diagnosed w/ breast cancer (also have an aunt that had it), so even though my genetic testing came back negative, everyone says there has to be some genetic cause, so I didn't want to go through all this again.
5) If I had done just a lumpectomy, I would have had to do radiation, and if I later had to do mastectomy, it was only 50/50 that reconstruction would work.
6) Recovery from a double mastectomy was about the same as a single per my plastic surgeon and my breast surgeon.

Before you make your decision, you need to determine your risk for recurrence or a new primary cancer developing. Are they letting you talk to an oncologist before you decide? I know that's not always the case. I opted to do the genetic testing before my surgery, so that gave me some time. I met w/ the oncologist and plastic surgeon before I made my decision to get as much info as I could.

Please note that just because you have a mastectomy (single or double) that does not always affect whether or not you will need radiation or chemo. Luckily I needed neither. Nothing in the lymph nodes, tumor was right behind the nipple so not near the chest wall, the tumor was triple negative but low-grade (had it been high-grade they would try chemo even though my kind doesn't respond well to chemo; low grade doesn't spread very much so mastectomy pretty much takes care of it).

They did end up find ADH throughout my non-cancer breast that ahd not shown up on the mamograms, ultrasound or the MRI, so my oncologist said I made the right decision.

I don't know if any of this helps. Lots of good info on breastcancer.org. Just don't rush into your decision. As long as it's not inflammatory BC (my oldest sis had this, you can't wait on that kind), you have a little time to decide.

 

[Pea-n-Me]

Pea, You're right. Have a preventative mastectomy is not the right answer for everyone. I think it was for me, but I am 63 and have had cancer twice. I would never judge anyone's personal decision.

Yes, for me, I had twins who were just five years old. I had sick time in my bank, but would've used it all up between such a big surgery and chemo. And had I done it I would have opted for immediate reconstruction (and no radiation) and that would've involved major abdominal surgery in addition to the major chest surgery. Being a nurse, and talking to both surgeons I consulted, I knew this would knock me on my butt and I would not be able to fully recover before going right into chemo within 30 days of the surgery (which was recommended then, and even more so today). As it was, even with the breast conserving surgery and all that I had going on (mom to young kids, working nurse, caregiver for elderly mom, one dog dying of brain tumor and the other unable to walk, etc.), I was wiped - reserves were low going into chemo and fighting the fatigue throughout that and radiation was rough, while still trying to work and take care of things at home. It was the right choice for me, too, as I have not had a recurrence (knock on wood) and as I think I mentioned above, am pretty much - as much as one can be, anyway - considered cured from my original cancer, according to my oncologist this fall, finally. (She said the chances of recurrence now are very, very low.)

Hey TMM! Sorry to hear about your diagnosis. I don't check in here much (trying to get on with things???), but I did want to respond to you.

I had a double mastectomy in July 2014. Under regular old breast cancer circumstances i might not have but here's why I did:

1) I had a rare tumor that can come from intraductal papilomas. I had already had one papiloma removed form my non-cancer side ( and one form my cancer side) and had another one that needed to come out.
2) On my cancer side, I'd had a biggish papiloma removed in late 2013. If I did a lumpectomy and radiation, that side would have been way smaller than the other side (it was already smaller before all this).
3) My mother was going through cancer treatment, and I was driving back and forth every weekend and sometimes during the week taking care of her (150 miles RT form my house). I didn't have time to deal w/ six weeks of radiation treatments.
4) I was the third sibling in my family to be diagnosed w/ breast cancer (also have an aunt that had it), so even though my genetic testing came back negative, everyone says there has to be some genetic cause, so I didn't want to go through all this again.
5) If I had done just a lumpectomy, I would have had to do radiation, and if I later had to do mastectomy, it was only 50/50 that reconstruction would work.
6) Recovery from a double mastectomy was about the same as a single per my plastic surgeon and my breast surgeon.

Before you make your decision, you need to determine your risk for recurrence or a new primary cancer developing. Are they letting you talk to an oncologist before you decide? I know that's not always the case. I opted to do the genetic testing before my surgery, so that gave me some time. I met w/ the oncologist and plastic surgeon before I made my decision to get as much info as I could.

Please note that just because you have a mastectomy (single or double) that does not always affect whether or not you will need radiation or chemo. Luckily I needed neither. Nothing in the lymph nodes, tumor was right behind the nipple so not near the chest wall, the tumor was triple negative but low-grade (had it been high-grade they would try chemo even though my kind doesn't respond well to chemo; low grade doesn't spread very much so mastectomy pretty much takes care of it).

They did end up find ADH throughout my non-cancer breast that ahd not shown up on the mamograms, ultrasound or the MRI, so my oncologist said I made the right decision.

I don't know if any of this helps. Lots of good info on breastcancer.org. Just don't rush into your decision. As long as it's not inflammatory BC (my oldest sis had this, you can't wait on that kind), you have a little time to decide.

And this is exactly why it's good to think it through so thoroughly. Lots of issues there to consider.

Please note that just because you have a mastectomy (single or double) that does not always affect whether or not you will need radiation or chemo. Luckily I needed neither. Nothing in the lymph nodes, tumor was right behind the nipple so not near the chest wall, the tumor was triple negative but low-grade (had it been high-grade they would try chemo even though my kind doesn't respond well to chemo; low grade doesn't spread very much so mastectomy pretty much takes care of it).

Mine was IDC, high grade, triple negative, with two nodes positive. Four doses of chemo was recommended for the tumor, and four more for the nodes, basically - as well as radiation. With the triple negative my oncologist said the time to be aggressive was then, ie at the beginning, since after initial treatment was over, that was it. So we were, with the adjuvant therapies, and it did the trick.

 

[Pea-n-Me]

Good things to think about guys. Thanks

One of my dh's coworkers died from the radiation treatments and not the cancer. That is a bit unnerving right there.

I think it's pretty rare to die from radiation. Years ago, it wasn't as fine tuned as it is today, though, and you still hear of some cases where things didn't go well, such as in the throat for esophageal cancer, etc. For breast cancer, though, it's generally safe. Side effects can include burns and fatigue, as well as inconvenience, but often you can stay local, even if you go into a major center far away for other treatment. Just find a very, very good radiation oncologist. First order of business is a long time spent in a CT scanner "mapping" where the radiation beams will go. They put three small, pinpoint tattoos on your skin so they know, forever, exactly where the radiation went, so it's all very precise. You do get some funky pains down the road, but you get those with surgery too. The big thing to take into consideration with radiation is whether they will be radiating the left breast, or the right breast. With the left breast, the way the beams go, they can hit your heart and cause changes to it. With the right side, they can hit a portion of your lung - I'm not sure if it causes changes as much to the lung as to the heart, maybe something to ask the Rad Onc. Mine was on the right so I was less concerned about the radiation. One more piece of information to use when deciding on your personal best course of treatment.

 

[The Mystery Machine]

Wow, that was certainly something to chew on. So here is my situation right now.

I just put in for a call to my OBGYN. She did not call me yesterday. It was the "Nurse Navigator" that called to tell me the news.

I got my mamm/bio at a different hospital chain that my OBGYN is in. So it is making things wonky with communication. I am getting what she wants and what the other chain wants because I had my testing there.

The "nurse navigator" is waiting on where I need to send the info. She told me I was to send them to a surgeon or I can pick up the CD. I just have to come in and sign a release.

My OBGYN wants to send info to the surgeon she is recommending.

Issue....today is the only day to send/schedule because they are off work. I will have to wait till after the holiday's.

My OBGYN is on vacation but she may call me today anyway. We will see.

 

[Pea-n-Me]

Tough timing. This gets so much easier once you have all of the information and decisions are made.

I was told my results by my primary care NP, too. (Ironically enough, she got BC later herself, too.)

So which major cancer center is near you? I would literally go to their website, pick an oncology surgeon who specializes in breast cancer, and have the information sent there. You can still switch to someone else later, but at least the info will be there. You could also have it sent to another if you want, but make sure it's a surgeon who specializes in BC and is up to date on the latest information.

Also, pick your brain to see if there's anyone you know, or friends of friends, etc., who've had BC and maybe reach out to them to see who they chose, and why, how they liked him or her.

My breast surgeon did an amazing job. Sort of an odd personality, though, and she did a few things down the road that were weird. Thankfully I didn't have to interact a ton with her later. But I suppose if I need surgery down the road, I'd go to her again, since the thing of primary importance was that she knew what she was doing and did well, and she did.

 

[The Mystery Machine]

I have Siteman Cancer Center near me.

My SIL gave me a name that a friend of her's used.

I spoke with my OBGYN and I am going to see the surgeon she recommended, if anything to be seen quickly to get a FULL diagnosis.

 

[Pea-n-Me]

Ok. So one more fly in the ointment:

Breast cancer surgeons take the cancer out. They are not specialists in adjuvant therapies - oncologists are. So in order to get a super clear picture, and to accurately consider ALL of your options, you should also meet with an oncologist, too, as a pp mentioned. ETA they will interpret the biopsy and pathology results, and decide the best course of action. And oncologists aren't just for things like chemo, they also prescribe things like tamoxifen if you are hormone receptor positive. They basically direct your care, and you follow up with them for a very long time. The surgeon goes away after your final follow up, which is like a year out or so, if there are no further problems. My oncologist, on the other hand, I still see twelve years later. with no end in sight. So pick a good one, and one you like.

And if you do radiation, you'll need a radiation oncologist, but that can come much later.

 

[Pea-n-Me]

I have Siteman Cancer Center near me.

My SIL gave me a name that a friend of her's used.

I spoke with my OBGYN and I am going to see the surgeon she recommended, if anything to be seen quickly to get a FULL diagnosis.

I looked around the site. It looks like they make it easy for you in that they have surgeons, oncologists and radiation oncologists all listed under Breast Oncology. You just have to pick which surgeon you like, who has availability soon, and which oncologist you'd like to see, for now. You can always switch it up if you don't click, etc. But this way they'll have your records and you can get all your care right there if you like. It's good that it's close.

 

[Pea-n-Me]

Oh, and one more thing, just so you know. Treatment plans are usually divised on recommendations from the American Cancer Society, so ideally, no matter where you go, recommended treatment *should be* about the same, based on type, size, lymph node involvement, grade, stage, etc. And of course, each patient's plan may vary a little based on the choices they make. Sometimes if there is a difficult, or unusual, case, they'll take it to "oncology rounds", where generally they meet once a week to get input/opinions from multiple oncologists in the area on a particular case. So it can boil down to how well you actually like the doctor, whether he or she listens to you and your concerns, what the bedside manner is like, availabilty, team members, how they treat your family, what the office staff is like, etc. But of course I'd want one with a great background and plenty of experience anyway, since everything is not cookie cutter and there can be decisions that aren't by the book, in the course of the treatment, etc. There are always lots of little things that come up. But for the big plan, it should be pretty consistent from doctor to doctor.

 

[Straitlover]

I forgot to say in my post, I did the bilateral mastectomy w/ reconstruction. I had tissue expanders put in at the time of the mx, had fills and then replaced them w/ silicone implants in December 2014. My PS didn't even offer any other kind of reconstruction, which was fine with me. Recovery from any of those others would have interfered w/ my caregiving duties, plus they don't sound too hot to me! I don't know if it's because he doesn't do any of the others (DIEP, tram flap, etc) or if it was because of my weight (plus size/obese). I know I read that obese women were not eligible for some of the other types of reconstruction because of blood flow issues in the fat.

 

[The Mystery Machine]

Well, DH & I are at my sister's. I had to evacuate my house due to flooding. It was crazy last night. I grabbed stuff and we got out of there. My neighbor is staying and has our key.

The dogs went to the kennel.

We are hoping our house does not flood, but the Meramec River is right at our doorstep and getting out of the neighborhood would have been impossible.

So my current update is I have to go and grab my CD from the hospital today.
On New Yrs Eve I have an appt with the surgeon that my OBGYN recommended.
On the 4th I am having an MRI.
Then I have appts. with the oncologist and the radiation person on the 6th.

I am reading all of your posts. It is just crazy on top of crazy for me.