Dcis decision

traceybeth · July 2013

Hello all, I was wondering if anyone could offer some advice.

I was diagnosed w Dcis grade 3 estrogen/progesterone positive in january. After a rocky start w HMO docs, I had a lumpectomy and SNB in march. Although nodes clear, I had positive margins and needed another lumpectomy.

I then found out I was pregnant- conceived about a week before surgery. (I'm pretty sure I'm having a smurf after all the blue dye injected for the sentinel biopsy).

Second lumpectomy postponed till June so I could be in 2nd trimester. Unfortunately, positive margins again. The docs are concerned that my dcis is not showing up on imaging as we have taken out 5cm full of it and only 1cm was on mammo/MRI. They make the point that it could be anywhere in my breasts and not showing up.

Now I am 20 weeks pregnant and have options of:

1) total mastectomy now w delayed recon

2) partial mastectomy now w post baby mastectomy

3) wait 4 months and have mastectomy and recon after baby.

I also have two kids ages 8 and 10. I am 41 years old.

Any advice would be appreciated.

Tracey

ballet12 · July 2013

Wow. First of all congrats on your pregnancy. About your decision on procedures, did they say that you have positive margins in all directions? Are they not confident that a third lumpectomy would get it? I guess they don't want to repeat the mammo given that you are pregnant. Could they repeat the MRI to see if more shows up?

I think that total mastectomy would be very stressful while pregnant (although I never had it, but imagine it would be). I'd do the partial and see if maybe that was the charm (it took 3 for me to get clean margins). Then you could decide post delivery if you still wanted to do a mastectomy or you would go for radiation instead. If they think it's dangerous to wait, then go for the mastectomy now with delayed reconstruction. You mentioned that they think it could be in both breasts?

traceybeth · July 2013

Thank you for your response!

3/6 positive margins. I haven't had new imaging but the mammo and MRI from January showed only
That said- I would much prefer another lumpectomy and be done.

I have no indication anything is wrong w left breast but don't want to do single mastectomy and still need tamoxifen.

They can't say if its dangerous to wait but pregnancy hormones may be fueling the growth.

My head is spinning.

ballet12 · July 2013

Get a second opinion ASAP from a cancer center (preferably NCI-designated), if at all possible. They deal with these kinds of situations more commonly than others. You really can't make this decision on your own.

deb1973 · July 2013

Congratulations on your pregnancy, but I am so sorry that (like all of us) you have to come to this board. I agree w/ ballet12 about the second opinion and also feel like, in your shoes, I would need more information about the relative risks and benefits of each procedure.

For instance, does partial mastectomy pose more or less risk to you and your baby than full mastectomy (for example, would you be sedated longer and would the stress to your body be greater) while you are pregnant? Or are the risks basically the same and they think they can still get clear margins via the partial mastectomy?

They also need to give you a clearer understanding of what it would mean to wait till after you give birth with grade 3 DCIS. Hopefully, if you go to a facility that has established protocols for dealing with your situation, your doctors will be able to give you good guidance.

Anyhow, I'm very sorry you are going through all this right now. I think there have been others who have been diagnosed while pregnant who have posted on the DCIS board so maybe you could do a search to see what other info there might be.

Hugs,

Deb

Beesie · July 2013

traceybeth, let me too offer my congratulations on your pregnancy! I am sorry though that you have to deal with this DCIS diagnosis at a time when you should be anticipating only the joy of your upcoming new arrival.

I agree with ballet12 and deb. You need more information from your doctors in terms of which approach they consider to be the safest for your pregnancy and your baby, or whether they feel there is any significant difference at all in the risks with any of the procedures. You also need to know how they feel about each of the options as it relates to your health and your risk from this diagnosis. A second opinion would be a good idea.

Sending (((Hugs))) and my hope that you get some clear direction from your doctors so that you can make a decision that you are comfortable with.

traceybeth · July 2013

Thank you ladies!

I wish it was easier to take your advice. After 7 months of HMO hell and 2 botched surgeries, my husband got a new job and a bcbs ppo plan. I felt like it was my golden ticket. I finally had ability to leave Las Vegas for treatment.

So I went to cedar Sinai and the doctor was supposed to present me to a board of oncologists and call me Thursday (yesterday).

Needless to say, she never called. I've left emails and messages but nothing.

I'm as frustrated w the medical system as I am w dcis.

Does anyone have a west coast team that they recommend?

deb1973 · July 2013

Hi Traceybeth,

That's awful that your doc not only didn't get back to you, but also left your phone calls unreturned. I wish I could give you the names of the perfect team in SoCal since that's closer to Nevada. I'm in Nor Cal & can say at least that my aunt was treated for invasive breast cancer at UCLA & was very happy with her treatment. Angelina Jolie's surgeon also founded the Pink Lotus Treatment Center in the Los Angeles area. In Nor Cal, some if the more well-known treatment facilities are Stanford, UCSF, & Cal. Pacific Medical Center. I will PM you with more details in that regard. I consulted at MD Anderson & if you're inclined to travel, they are extremely thorough.

Hopefully, you can get a team on board who you trust. You are going through more than enough without having to deal with unresponsive caregivers.

Also, please make sure that whoever you have is one of the more experienced and well regarded doctors at whatever facility you go to. I've had experiences (even at top hospitals) where the first available doctor is often the least experienced one on staff.

Please let me know if you'd like more specifics or I can help in any way.

Hugs,

Deb

traceybeth · July 2013

Thank you so much. This has helped me not feel so abandoned.

Deb- I wish you were my doctor.

Here is the email I received this morning from the oncologist surgeon from cedar Sinai (not the phone call I was told I would get and 2 (long) days late but its something:

Tracey

We went through your imaging and surgical reports. Your imaging does nt reflect the extent of disease and clearly everyone felt that mammo and MRI did not demonstrate the extent of disease. This if you had a lumpectomy how do we follow you especially because you are high risk (cancer at young age) and people felt mastectomies was really the best option. We then discussed timing. Waiting does put you at a risk for the possibility that untreated dcis (waiting for surgery) for 6 months puts you at a risk of about 1-3 percent of having invasive cancer and the risk of metastasis in the future. In terms of surgery after delivery most would wait about 6-8 weeks as there is a high risk of complications with infections ESP if woman is lactating.

We also discussed nipple sparing versus removing nipples. Your scar is not ideal in addition your breast are ptotic which would not make you have a good cosmetic outcome and removing nipples would be better

Let me know your thoughts

deb1973 · July 2013

Hi Traceybeth,

Unfortunately, it is often other patients who "get it" more than some of the doctors.

This e-mail was written hastily & without really thinking about the audience (you) who it was going out to. It is packed with information, but not put together in a clear or logical fashion. What is most lacking is a concrete treatment recommendation and an explanation of its impact on you and your baby.

I would definitely follow up & try to pin your doctor down on the recommended treatment plan while aggressively seeking a second opinion. If you decide to stay where you are, consider asking if they have a patient advocate on staff. Wherever you go, they should be giving your case the utmost urgency and be openly available to answer questions.

From what I can tell, they are recommending bilateral, non-nipple sparing mastectomy with no concrete advice on whether it should be delayed or immediate with still no discussion of the risks of anesthesia and surgery during pregnancy. There is also very perfunctory analysis (other than your young age & highbgrade DCIS) as to why they recommend BMX. This is the kind of major decision that deserves to be discussed at length in an office visit or at least a phone call.

No wonder you are feeling frustrated.

Take care,

Deb

ballet12 · July 2013

Hi Traceybeth, maybe you want to post on a non DCIS thread to get input on west coast cancer centers and teams. I totally agree with Deb that the email that you received did not address your specific and unique concerns in a satisfactory manner. Also, as Deb mentioned, the notion of doing a mastectomy vs. lumpectomy has to be presented with the pros and cons of both sides fully elaborated, in the context of a pregnancy. They owe that to you, rather than practically making a decision for you (very old school). This is your body, and you need to live with these decisions for the rest of your life. Also, while it was good that the response was from a surgeon (?), they should also have a contact person that you can call to clarify their responses and ask additional questions. About that you can't be monitored if you do a lumpectomy, because of your young age and high risk, that's actually nonsense (that's them covering their a...). You need to find a facility and team that deals with pregnant women with sensitivity and care. The only thing I agree that they said was that you wouldn't want to wait too long for surgery because of the small chance of invasive disease. OK, that makes sense. My surgeon from many, many years ago was Susan Love, MD whom we know is at UCLA. I knew her before she became famous (practicing in Massachusetts). I don't know if she is actually seeing patients as she is recovering from cancer (leukemia) herself. I'm sure there are others at UCLA who are equally good. Again, best of luck and sorry this is so difficult.

Dcis decision

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