Treatment Decisions

2furrydoggos

I just joined this network today and am looking for some feedback and opinions from others that have been in similar situations.....

I'm 34 years old and got diagnosed with breast cancer (DCIS in the left) about 3 months ago.  I have a family history of breast cancer, so went with a bi-lateral mastectomy 5 weeks ago (also found out I have the BRCA2 mutation 2 months ago - will get ovaries, Fallopian tubes, and uterus removed at a later date).  When I got my full pathology report back, it showed that there was some invasive cancer within the DCIS cells (0.4cm of invasive inside 4cm of DCIS), and the surgeon did not get the clear margins that she would have liked around the DCIS cells - the affected area was right up against the skin (which got left behind, except for the nipples which were also removed).  It also showed that my cells have hormone receptors (estrogen and progesterone).  I've been presented with some options, but am not sure what to do since there is no clear right/wrong decision to make for my circumstances, and I just keep going around in circles every time I speak with one of my physicians.....

1.  Do nothing.  I've been told that my risk of recurrence is low (about 20-25%), but that number doesn't seem terribly low to me.

2.  An additional surgery to "thin" the skin a bit more to try and get the clear margins (which would need to be done ASAP).  However, there is a good chance that doing this won't work because the skin may not be left thick enough to stay viable.  If it ends up not being viable, I would need an additional surgery taking a flap from my back to patch onto that spot on the left breast (or I could just do the flap surgery and skip the "thinning" attempt).

3.  Radiation.  The radiation oncologist says she thinks I will need 10-15 treatments, but would not be able to start them until I finish with my expander implants (currently have in).  I'm worried about the side effects of radiation and how it may permanently affect the skin in that area (I'm pretty fair skinned).

4. Tamoxifen.  The medical oncologist I met with says that this will likely decrease my risk by about 50% (so bring it down to about 10% if I do just this).  However, I am 34 years old and taking this for the next 5-10 years will immediately put me into early menopause and I'll have to deal with all the side effects that entails (in addition to ending any thoughts I had about becoming pregnant again).

5.  Any combination of the above.

I'm very hesitant to do the surgery because it just doesn't feel right to have them hack me apart even more to try and remove something that might not even be there.  Not doing anything seems like a pretty risky chance to take.  I only know what the physicians have told me about the radiation and Tamoxifen, which doesn't seem like much.

Has anyone else been in similar circumstances to mine?  How are the side effects of radiation and Tamoxifen?  How is someone supposed to make this decision with so little definitive information to go on?

Thanks.

2furrydoggos

HapB said:

2furrydogs

Hi. I am sorry that you have to be here. I would highly suggest that you go for a second opinion at a center of excellence for cancer. You are young, and these are life altering decisions for you.  Were you Her2+ ? What was your tumor size and grade? Ki67 factor?  You should know all of the tumor characteristics To make your decision. Also, there are calculators that will predict your chances of recurrence free survival to help you. You should ask your doctor a out the Onco dx score or the Mammaprint test. These decisions are agonizing for all of us. There is not a lot of research on some of the newer treatments yet. For me, I had a stage 1a  tumor, less than 2cm, with no node involvement, but it was triple positive and Her2+ tumors tend to be more aggressive. My risk or recurrence in 10 yrs. was about 25% also. I am doing chemo, radiation, targeted therapy for a year and AI for 5-10 yrs. i am still not convinced that I am doing the right thing.  I can't stress enough to you to get yourself to the best cancer center you can for at least this second opinion. This is your life and sometimes there are no do overs. 

Most insurance companies will pay for a second opinion. Call your company if you have questions. Research cancer hospitals in terms of expected outcomes and make an appointment asap. 

 

Also, this forum is not very active and you won't get much information here. Try breastcancer.org and search for an appropriate forum that matches your particular breast cancer. Do you have your pathology report?

 

Hi.  I have gotten many

Hi.  I have gotten many opinions so far: my breast surgeon, plastic surgeon, medical oncologist, radiation oncologist, fertility specialist, genetic counselor, and my PCP.  All of them have said that there is no clear decision for me, it's just going to be up to my personal preference of what I want to do.

I do have my pathology report.  I'm not sure what Her2+ is.  My tumor was 4cm of DCIS with 0.4cm of invasive cancer within that.  It was grade 2.  I'm also not sure what Ki67 factor is.  There was no node involvement.  I am positive for estrogen and progesterone receptors.  The risk calculator that my oncologist used estimated my risk of recurrence to be 20-25%, with risk of death from recurrence of about 3%.  The cancer center I am being treated at has a very good reputation, and I trust my breast surgeon's opinions and referrals very much.

Thank you for the information and sharing your experience - I hope things are going well for you.  I will also check out the breastcancer.org site.

josma5

Going through decision, as well

2furrydoggos, I'm in a similar situation.

I recently had my mastectomy, going through the reconstruction process also.  My lobular carcinoma had spread to nearby tissues, and 5 of my nodes were involved.  My cancer was fed completely by my hormones, and there is no genetic link in my family.   The mastectomy was successful, and the reconstruction is going well.  I'm now 46,  facing the Oncologist's recommendation (standard for what I am told here) of chemotherapy, radiation, the tamoxifen for 5 years.  At first, I was considering all a go.  Then my gut instinct kicked in and thought I'd better do some digging and asking.  After my research, questioning the Oncologist, and looking over the numbers, I am at the point of refusing the chemotherapy due to the overall risks involved - seems benefits are less worth the risk.  I realize this will be a fight with my Oncologist, I'm even concerned she will refuse other treatments if I refuse the chemo.  Is there anyone else who has chosen this therapy regime, to do without chemo?  If so, how has it worked out for you?

 

HapB

2furrydogs

Hi. I am sorry that you have to be here. I would highly suggest that you go for a second opinion at a center of excellence for cancer. You are young, and these are life altering decisions for you.  Were you Her2+ ? What was your tumor size and grade? Ki67 factor?  You should know all of the tumor characteristics To make your decision. Also, there are calculators that will predict your chances of recurrence free survival to help you. You should ask your doctor a out the Onco dx score or the Mammaprint test. These decisions are agonizing for all of us. There is not a lot of research on some of the newer treatments yet. For me, I had a stage 1a  tumor, less than 2cm, with no node involvement, but it was triple positive and Her2+ tumors tend to be more aggressive. My risk or recurrence in 10 yrs. was about 25% also. I am doing chemo, radiation, targeted therapy for a year and AI for 5-10 yrs. i am still not convinced that I am doing the right thing.  I can't stress enough to you to get yourself to the best cancer center you can for at least this second opinion. This is your life and sometimes there are no do overs. 

Most insurance companies will pay for a second opinion. Call your company if you have questions. Research cancer hospitals in terms of expected outcomes and make an appointment asap. 

 

Also, this forum is not very active and you won't get much information here. Try breastcancer.org and search for an appropriate forum that matches your particular breast cancer. Do you have your pathology report?

 

HapB

2furrydoggos said:

Hi.  I have gotten many

Hi.  I have gotten many opinions so far: my breast surgeon, plastic surgeon, medical oncologist, radiation oncologist, fertility specialist, genetic counselor, and my PCP.  All of them have said that there is no clear decision for me, it's just going to be up to my personal preference of what I want to do.

I do have my pathology report.  I'm not sure what Her2+ is.  My tumor was 4cm of DCIS with 0.4cm of invasive cancer within that.  It was grade 2.  I'm also not sure what Ki67 factor is.  There was no node involvement.  I am positive for estrogen and progesterone receptors.  The risk calculator that my oncologist used estimated my risk of recurrence to be 20-25%, with risk of death from recurrence of about 3%.  The cancer center I am being treated at has a very good reputation, and I trust my breast surgeon's opinions and referrals very much.

Thank you for the information and sharing your experience - I hope things are going well for you.  I will also check out the breastcancer.org site.

2furrydogs

I am not sure whether HEr2 status matters now that you have had the bilateral mastectomy. Maybe not.

HapB

Decisions

I was faced with the same decision, though my tumor was much smaller and no node involvement, clear margins, no veinous invasion. My tumor was triple positive .  I was told that mastectomy was not helpful to me to prevent recurrence. I had a lumpectomy. For me, the risks seemed to outweigh the benefits, as I am 65. I have started with the chemo at my 26 yr. old daughter's insistence. She just needed to lnow i had done all that I could to stay with her. So be it.  The deciding factor is the Her2 positive status, as this makes the cancer more likely to recur and more aggressive. It is important that you find out the Her2 status! Make sure that your reaults are done using the FISH method. 

Apaugh

HapB said:

Decisions

I was faced with the same decision, though my tumor was much smaller and no node involvement, clear margins, no veinous invasion. My tumor was triple positive .  I was told that mastectomy was not helpful to me to prevent recurrence. I had a lumpectomy. For me, the risks seemed to outweigh the benefits, as I am 65. I have started with the chemo at my 26 yr. old daughter's insistence. She just needed to lnow i had done all that I could to stay with her. So be it.  The deciding factor is the Her2 positive status, as this makes the cancer more likely to recur and more aggressive. It is important that you find out the Her2 status! Make sure that your reaults are done using the FISH method. 

HER 2

Yep, the HER 2 is what made me decide to get the chemo. 

I wish you the best and prayers.

Hugs,

Annie

Beepositive

hello 2Furry

sorry you are here..but prays and blessing to your....I currently have expander (left breast) and just finished my radiation about 2 weeks ago...YES! my radialoist allowed the radiation treatments (while I had my breast expander) after i completed my final filler with the expander (i had about 3 filler in the breast expander(to stretch the skin and prepare for implants) and will be getting my implants scheduled in about 6 months or so after my skin heal from the radiation (sunburn peeling etc)  BEST OF LUCK TO YOU WITH EVERYTHING...as i keep saying one here KEEP ASKING DOCTORS LOTS AND LOTS OF qUESTIONS.

bEEPOSITIVE   

Kats2

Get a 2nd opinion

Hi 2Furrydogs,

I realize that you like your doctors, but if I were in your shoes, I'd definitely get a 2nd opinion preferably at a Cancer Center that specializes in breast cancer. 

Your case is a complicated one in many aspects. There are too many variables. You need "fresh eyes" to look at the situation that you're dealing with. You may need a team of Oncologists to study your case and help you make a decision that you're comfortable with. Your doctors should welcome other opinions. I know my Onvologist did and so did my insurance company.

Don't worry. You won't be slighting your present doctors. It's your life we're talking about. You're young and really do need more input and support in what type of treatment you should proceed with.

I went to Dana Farber in Boston for my 2nd opinion and 2 years later I went to their satellite center which was closer to me for yet another opinion about what oral medications I should be taking. My Oncologist was in favor of all of this. The consulting doctors called my Oncologist on  the phone with their suggestions. One e-mailed him with her thoughts. I even had 3 scans and bloodwork done at Dana Farber, all covered by my insurance except for my co-pay. All the scans, etc. were sent to my present Oncologist. I did get a different opinion on my medical condition by going for these extra consultations. It shed new light on my situation. 

Just get more input from knowledgeable Oncologists. It won't hurt to do this and you'll feel better about how you should proceed.

That's my take on your situation. I wish I had gone earlier for a 2nd opinion at the beginning of my diagnosis as my first group of doctors did NOT do right by me. I had to leave this BIG Center and found an Oncologist who really cared about my welfare. Live and learn.

 

Wishing you well.  Kats2

 

 

HapB

Kats2 said:

Get a 2nd opinion

Hi 2Furrydogs,

I realize that you like your doctors, but if I were in your shoes, I'd definitely get a 2nd opinion preferably at a Cancer Center that specializes in breast cancer. 

Your case is a complicated one in many aspects. There are too many variables. You need "fresh eyes" to look at the situation that you're dealing with. You may need a team of Oncologists to study your case and help you make a decision that you're comfortable with. Your doctors should welcome other opinions. I know my Onvologist did and so did my insurance company.

Don't worry. You won't be slighting your present doctors. It's your life we're talking about. You're young and really do need more input and support in what type of treatment you should proceed with.

I went to Dana Farber in Boston for my 2nd opinion and 2 years later I went to their satellite center which was closer to me for yet another opinion about what oral medications I should be taking. My Oncologist was in favor of all of this. The consulting doctors called my Oncologist on  the phone with their suggestions. One e-mailed him with her thoughts. I even had 3 scans and bloodwork done at Dana Farber, all covered by my insurance except for my co-pay. All the scans, etc. were sent to my present Oncologist. I did get a different opinion on my medical condition by going for these extra consultations. It shed new light on my situation. 

Just get more input from knowledgeable Oncologists. It won't hurt to do this and you'll feel better about how you should proceed.

That's my take on your situation. I wish I had gone earlier for a 2nd opinion at the beginning of my diagnosis as my first group of doctors did NOT do right by me. I had to leave this BIG Center and found an Oncologist who really cared about my welfare. Live and learn.

 

Wishing you well.  Kats2

 

 

Second opinions!

I agree 100%!   Kats2, do you live in Massachusetts. I get all my medical care at MGH and have been seen in the past at Dana Farber. We only have one life!!!!!