Uncertain about my treatment options

Cheskett

I am new to all this so hope I'm posting correctly.

I've been diagnose with DCIS. This will be the second episode but a different breast. The margins of my first case were slim but met the 2 millimeter safety.

This second diagnosis has no margins.

I've been offered 2 options. Full or partial mastectomy.

I've declined radiation and tamoxiphan (sp)

The doctor has said that I will have a 20% chance of recurrence with no additional treatment.

I'm wondering if anyone has had this same situation.

The doctor thinks I should really consider a full mastectomy. The thought scares me.

I'm willing to lose my nipple in a partial mastectomy

i know there are others who don't have the choices I have and I hope I haven't insulted anyone.

Any advice would help me see this clearly.

Bright55

sorry you havehad this happen.

Early days with your results and these often change post sugery when more accuate testing is done

All of us here have had to make body changing decisions

Please use resources avaiable here

Lots to deal with

1in 5 chance is quite high

Lots of advice to take in from the group

Good luck

muska

Hi Cheskett,

I am sorry you have to deal with this for a second time. You didn't share much information about your first diagnosis, when it was and how old you were then or are now. I am also not sure why you are scared of full mastectomy or why you refused any non-surgical treatment. Maybe if you share a bit more about yourself we might be better able to help you?

Best of luck to you.

Cheskett

I was 49 the first diagnosis. I'm now 54. I did the radiation treatment the first time around. This may sound petty but I missed 6 weeks of work and I word for school district that does not pay into disability.

This time around taking 6 eeeks off is impossible. I'm single and live alone. I also work with students and have to make sure I'm mentally secure. I've been told by numerous patients that the tamoxifen is a rough drug to tolerate.

The thought of losing a breast seems so extreme to me. I am vain I guess.

I haven't been able to find advice on my situation. A dose of reality is what I really need and my doc is concerned but if there was someone who was in the same situation would help.

Both cases I had were DCIS with this new diagnosis a little more advanced. Meaning my margin in the duct is very small and might not have the necessary clear margins with a lumpectomy. And no matter what I do I will lose my nipple but could keep my breast if I want to take the 20% recurr

muska

Hi Cheskett, I am sure others more experienced in employment issues will give you useful comments. I also recommend you post a question on the Employment and Insurance forum on this website, there are many knowledgeable women who can counsel you on questions related to being absent from work during treatment.

I just want to comment briefly about medical aspects. You are still young by BC standards and in my humble opinion should get more treatment this time around. Let me try to explain why.

1. Your first treatment didn't stop a recurrence in the opposite breast which to me indicates there is something going on on systemic level that requires systemic treatment (very simplistic explanation of course.)
2. You are young by BC standards and have many more years ahead of you. Not five years, not ten years - you should be planning for many more.
3. You live alone. Instead of stopping you from getting more treatment that should be the reason why you need to get as much treatment as medical professionals recommend in this situation. Simply put, you have nobody to support you if you get seriously ill and should be getting this more aggressive treatment now while you are still able to take it.
4. About hormonal drugs, including tamoxifen. Hundreds of thousands of women have taken tamox over the last thirty years and benefited from it. At the age of 54 you have more options than five years ago because you are likely to become menopausal soon and can switch from tamox to aromatase inhibitors if needed. The side effects of these drugs are very individual and many women didn't get any at all and take them for longer than five years. I for one will be on it for at least ten years. Remember that only those who get side effects post about them, those who don't just go on with their lives and don't post. Talk to your doc about this. These drugs changed the landscape of BC treatment and are the reason we have so many survivors even at stage IV.
5. About mastectomy. If I were in your shoes I would get mastectomy without thinking twice or going for a second opinion. You will decide whether you want reconstruction or not. Mastectomy is not a very serious surgery if that is what your concern is about. If you don't do reconstruction the recovery is quicker. Depending on the kind of job you do you should be able to start working sooner than 6 weeks after double mastectomy surgery. If your job is not very physical and doesn't require heavy lifting I don't see why you couldn't start 3 -4 weeks after the surgery. If you have a desk job and can work remotely you should be able to start part time a week after surgery and slowly go back to your normal schedule.
6. Most importantly, please understand that you shouldn't be relying on chances this second time around. You didn't mention what tests you have had so far but your comment about DCIS being a little more advanced ttells me this might be more than DCIS (I hope I am wrong.)

Please listen to your docs, get a second opinion if needed but get more treatment this time than last.

All the best to you.

Sjacobs146

i think that you should at least give tamoxifen a try. I had absolutely no problems with it. My MO says that only 25% of her patients have SEs from it, and only a handful find them intolerable. If it turns out to be troublesome for you, then you can simply stop taking it. It's foolish to reject it without trying, especially if you're not going to consider other treatment options.

BarredOwl

Hi Cheskitt:

If I understand correctly, this is a second diagnosis of DCIS on the other breast. As it could affect choice of surgery, endocrine therapy, and/or surveillance, if you have not already done so, please request a referral for genetic counseling.

If a person carries a pathogenic mutation in a gene (e.g., BRCA1, BRCA2, or certain other genes) that confers a substantial life-time risk of breast cancer, this may lead to consideration of mastectomies, other risk reducing measures, and/or enhanced surveillance.

Your prior diagnosis of "early-age onset breast cancer" ("clinically use age ≤50 y because studies define early onset as either ≤40 or ≤50 y") would appear to warrant a referral for "further genetic risk evaluation" under the NCCN Guideline for Genetic/Familial High-Risk Assessment: Breast and Ovarian (Version 1.2017). Please be sure your team is informed of your prior diagnosis, and request a referral.

Additionally, the new disease in the opposite breast represents a new or second primary tumor. Two breast cancer primaries in a single individual would provide a second independent basis for a referral for genetic risk evaluation under the guidelines (i.e., "Two breast cancer primaries includes bilateral (contralateral) disease or two or more clearly separate ipsilateral primary tumors either diagnosed synchronously or asynchronously."). Other factors, such as family history may also support a referral.

A Genetic Counselor or other medical genetics professional with training in genetic and familial risk assessment will take a complete family history and relevant health history from you, and conduct a formal risk assessment. They will make a recommendation as to whether genetic testing should be considered. If so, they will also make a recommendation regarding appropriate testing options, in light of available clinical evidence (e.g., selection of specific genes or particular multigene panels). A Genetic Counselor should fully address the possible outcomes of proposed testing, and the pros, cons and limitations of testing. Whether to proceed with such testing or not is ultimately the patient's decision.

Please do not hesitate to contact your treatment team to request a referral as soon as possible.

BarredOwl