Ductal carcinoma in situ in one breast, lobular hyperplasia in other

Posted by varalax @varalax, Nov 29, 2021

I have been diagnosed with ducal carcinoma in SITU in left breast and have benign lobular hyperplasia in right .. should I got for bilateral mastectomy or just lumpectomy in left for DC in SITU. I am 45 yr old. Appreciate your help. I am really confused and devastated with this diagnosis.

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I am not a doctor and I cannot tell you what to do, but I was also young when I was diagnosed in my 30’s. The decisions we make should be considered differently (not more or less carefully) than someone in their 70’s. Not just because we still have more life to live with the decisions we make but there are also many things to consider.
Women who get cancer under the age of 45 tend to have a little more aggressive types of cancer, not always but it is worth looking at.
I did not have children so that consideration was easier in regards to worrying about them. It was also one of the reasons I decided not to adopt.
Do you need or want breasts for child rearing? Also your mate will have something to add to this conversation.
Can I give you the third degree about your cancer, so that I can understand your situation? Pull up a chair and let’s talk.
First if all, you don’t have to make a snap decision today, when is your follow up appointment? Did they tell you about the markers for your cancer? Hormone receptors, or her2 for example?

REPLY
@auntieoakley

I am not a doctor and I cannot tell you what to do, but I was also young when I was diagnosed in my 30’s. The decisions we make should be considered differently (not more or less carefully) than someone in their 70’s. Not just because we still have more life to live with the decisions we make but there are also many things to consider.
Women who get cancer under the age of 45 tend to have a little more aggressive types of cancer, not always but it is worth looking at.
I did not have children so that consideration was easier in regards to worrying about them. It was also one of the reasons I decided not to adopt.
Do you need or want breasts for child rearing? Also your mate will have something to add to this conversation.
Can I give you the third degree about your cancer, so that I can understand your situation? Pull up a chair and let’s talk.
First if all, you don’t have to make a snap decision today, when is your follow up appointment? Did they tell you about the markers for your cancer? Hormone receptors, or her2 for example?

Jump to this post

Thank you for your reply. Hormone receptors are positive. Genetic testing came back negative. Lobular hyperplasia is risk factor for future Cancer.

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The good, the bad and the ugly. The good is that the DCIS was still in situ and not a tumor invading large amounts of tissue. Also good is the druggable targets of hormone receptors.
The bad is the future risk of recurrence in either breast. Also bad, the possible treatments your doctor will recommend.
Lastly the ugly, I don’t mean ugly physically. Ugly is the anxiety and devastation from this diagnosis at an age where you think you are too young and too busy and too strong to have breast cancer.
I hear your concern over the increased risk in the other breast, this should factor in to your decision, but not the only factor.. I remember having so much anxiety over recurrence and deciding to ask for a bilateral mastectomy, to be told by the local oncologist (thankfully retired now) that “we don’t do that anymore”. I was not online at the time, and I did not work in a medical field so how was I to know different. So I got the lumpectomy and I worried. The other side of that coin is that I talk to a lot of people here on connect and as a patient advocate locally and those who get mastectomies do not worry less. So the decision you make will have to best the best decision for you.
I would like to add “The Great” . This is the new awareness of your life, being thankful for all of the things you have taken for granted, this is the gift from cancer. It got me off the working treadmill and fundamentally changed the way I view every situation.
I hope some of the questions and some of the conversation here will take some of the confusion out of this and help you start making decisions.
Have you talked with your family about this yet? What surgery and/ or treatment is your doctor recommending?

REPLY

Dr suggested lumpectomy or mastectomy.. ball in our court. As for both survival rates are same. Thank you for quick response.

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Greetings @varalax. I totally empathize with your feelings about your diagnosis. I was totally in shock and I got mine. It’s a very hard decision, and one you just have to make. No one can tell you what to do. However, I will share my story, lest it shed some light for you.

Last February, per a routine mammogram, I was diagnosed with ductal carcinoma in situ (DCIS) in the left breast. Frequently a good case for lumpectomy, which when paired with radiation has same outcome predictions. Several years ago, I had an atypical lobular hyperplasia (ALH) in my right breast. Thus, increased risk of future cancer. So similar to your situation.

DCIS is stage 0, almost considered a pre-cancer. However, my cancer did have ‘aggressive’ indicators. I was triple negative (Estrogen, progesterone, HER2) and grade 3.
They also have a strong family history of breast cancer. Four incidences, three of which died. I was negative for the BRCA gene, however, was positive for STK – 11, of which little is known to date.

I was right where you are as far as lumpectomy versus mastectomy. Also single mastectomy versus double mastectomy.

My hesitation with lumpectomy was:
– not wanting to do radiation (can damage heart, lungs, skin, etc)
– risk of future cancer

Subsequently, I went to Mayo clinic for a second opinion and they did an MRI. I learned an important thing. My DCIS showed up on the original mammogram. When they did the MRI, they also saw a second cancer… And invasive cancer… luckily Stage 1A.
– The DCIS showed up on the mammogram but not on the MRI.
– The Invasive showed up on the MRI, but not on the Mammogram.

Evidently, per Mayo, this is not uncommon. Have you had an MRI, as well as a mammogram?

This was devastating news, but made the decision easy for me. I ended up having a double mastectomy at him in the process of reconstruction. I’m a very active 64-year-old.

I wish you the best of luck in your decision. I’m very happy with my new breast they’re very pretty and have had little to no impact on our sex life. Prayers going out.

REPLY
@auntieoakley

The good, the bad and the ugly. The good is that the DCIS was still in situ and not a tumor invading large amounts of tissue. Also good is the druggable targets of hormone receptors.
The bad is the future risk of recurrence in either breast. Also bad, the possible treatments your doctor will recommend.
Lastly the ugly, I don’t mean ugly physically. Ugly is the anxiety and devastation from this diagnosis at an age where you think you are too young and too busy and too strong to have breast cancer.
I hear your concern over the increased risk in the other breast, this should factor in to your decision, but not the only factor.. I remember having so much anxiety over recurrence and deciding to ask for a bilateral mastectomy, to be told by the local oncologist (thankfully retired now) that “we don’t do that anymore”. I was not online at the time, and I did not work in a medical field so how was I to know different. So I got the lumpectomy and I worried. The other side of that coin is that I talk to a lot of people here on connect and as a patient advocate locally and those who get mastectomies do not worry less. So the decision you make will have to best the best decision for you.
I would like to add “The Great” . This is the new awareness of your life, being thankful for all of the things you have taken for granted, this is the gift from cancer. It got me off the working treadmill and fundamentally changed the way I view every situation.
I hope some of the questions and some of the conversation here will take some of the confusion out of this and help you start making decisions.
Have you talked with your family about this yet? What surgery and/ or treatment is your doctor recommending?

Jump to this post

Wow. I am not sure why your words resonated with me this morning but they did. Thank You🥰

REPLY

PS: Sorry for the typos above. Was dictating and had to run answer the door, hitting send before proofing. Happy to answer any questions.

If you haven’t had an MRI, perhaps that is your next step to ensure that there’s not more going on that would influence your decision.

I have an excellent counselor from our church, and she shared some wisdom that may help you. Generally, you are in shock from this kind of diagnosis. As a result, the executive center of your brain shuts down … and you’re in fight or flight mode. And here you are trying to make this important decision.

Sit in a quiet place. Slow your breathing way way down. Soften your abdomen between your sit bones and your hip bones… with each exhale soften more and more. This releases the pressure on your vagus nerve and re-engages your Executive Center. Calms you. Enables you to think more clearly. And just listen and process the information. You will know what to do. And it will be the perfect choice for you. Infinite blessings to you. You are not alone. We are many and we are with you. ❤️

REPLY
@kk57

Greetings @varalax. I totally empathize with your feelings about your diagnosis. I was totally in shock and I got mine. It’s a very hard decision, and one you just have to make. No one can tell you what to do. However, I will share my story, lest it shed some light for you.

Last February, per a routine mammogram, I was diagnosed with ductal carcinoma in situ (DCIS) in the left breast. Frequently a good case for lumpectomy, which when paired with radiation has same outcome predictions. Several years ago, I had an atypical lobular hyperplasia (ALH) in my right breast. Thus, increased risk of future cancer. So similar to your situation.

DCIS is stage 0, almost considered a pre-cancer. However, my cancer did have ‘aggressive’ indicators. I was triple negative (Estrogen, progesterone, HER2) and grade 3.
They also have a strong family history of breast cancer. Four incidences, three of which died. I was negative for the BRCA gene, however, was positive for STK – 11, of which little is known to date.

I was right where you are as far as lumpectomy versus mastectomy. Also single mastectomy versus double mastectomy.

My hesitation with lumpectomy was:
– not wanting to do radiation (can damage heart, lungs, skin, etc)
– risk of future cancer

Subsequently, I went to Mayo clinic for a second opinion and they did an MRI. I learned an important thing. My DCIS showed up on the original mammogram. When they did the MRI, they also saw a second cancer… And invasive cancer… luckily Stage 1A.
– The DCIS showed up on the mammogram but not on the MRI.
– The Invasive showed up on the MRI, but not on the Mammogram.

Evidently, per Mayo, this is not uncommon. Have you had an MRI, as well as a mammogram?

This was devastating news, but made the decision easy for me. I ended up having a double mastectomy at him in the process of reconstruction. I’m a very active 64-year-old.

I wish you the best of luck in your decision. I’m very happy with my new breast they’re very pretty and have had little to no impact on our sex life. Prayers going out.

Jump to this post

Thank you dear for your detail reply. Our case is quite similar. Glad you are doing great! Got some pointers for our decision from your story. Thank you again.

REPLY
@bluebird70

Wow. I am not sure why your words resonated with me this morning but they did. Thank You🥰

Jump to this post

Thank you for your valuable input in my case. It really helps.

REPLY
@kk57

PS: Sorry for the typos above. Was dictating and had to run answer the door, hitting send before proofing. Happy to answer any questions.

If you haven’t had an MRI, perhaps that is your next step to ensure that there’s not more going on that would influence your decision.

I have an excellent counselor from our church, and she shared some wisdom that may help you. Generally, you are in shock from this kind of diagnosis. As a result, the executive center of your brain shuts down … and you’re in fight or flight mode. And here you are trying to make this important decision.

Sit in a quiet place. Slow your breathing way way down. Soften your abdomen between your sit bones and your hip bones… with each exhale soften more and more. This releases the pressure on your vagus nerve and re-engages your Executive Center. Calms you. Enables you to think more clearly. And just listen and process the information. You will know what to do. And it will be the perfect choice for you. Infinite blessings to you. You are not alone. We are many and we are with you. ❤️

Jump to this post

I have done the MRI.They found atypical lobular hyperplasia in other breast. Nothing more that. But that is also a cancer risk factor. Calming down technique you mentioned, will definitely help. I am going to this now.
All help and prayers are appreciated, no need to say sorry please. Really appreciate your time and support in this.

REPLY
@kk57

PS: Sorry for the typos above. Was dictating and had to run answer the door, hitting send before proofing. Happy to answer any questions.

If you haven’t had an MRI, perhaps that is your next step to ensure that there’s not more going on that would influence your decision.

I have an excellent counselor from our church, and she shared some wisdom that may help you. Generally, you are in shock from this kind of diagnosis. As a result, the executive center of your brain shuts down … and you’re in fight or flight mode. And here you are trying to make this important decision.

Sit in a quiet place. Slow your breathing way way down. Soften your abdomen between your sit bones and your hip bones… with each exhale soften more and more. This releases the pressure on your vagus nerve and re-engages your Executive Center. Calms you. Enables you to think more clearly. And just listen and process the information. You will know what to do. And it will be the perfect choice for you. Infinite blessings to you. You are not alone. We are many and we are with you. ❤️

Jump to this post

This is extremely helpful, KK.

REPLY

Botton line is that you do not yet have an invasive cancer. The DCIS is now considered pre-cancer, though I would want to know grade. Did you have an Oncotype Dx test? That would tell you the risk of recurrence.

The lobular hyperplasia is benign and a risk factor for cancer, but not actual cancer.

You have time to decide. I would recommend getting as many opinions as you need (I got 4), until you feel completely comfortable. Is there a tumor board where you are getting care?

Ask about radiation side effects and risks, Ask about mastectomy. Ask about lumpectomy without radiation too.

Most of all find out your risk of recurrence via testing. Mammaprint is also used by some. Thirty percent of grade 3's actually have low Oncotypes.

You are still in relatively good shape. If you are super anxious during this decision time, ask for a few Ativan or similar med, and do a lot of walking or other exercise. Netflix is your friend if you can take the time.

REPLY
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