Newly diagnosed with lots of questions

Posted by journey99 @journey99, Jan 19, 2023

Newly diagnosed (3 days) and new to Mayo (1 day).
Diagnosed with Invasive Ductal Carcinoma/Grade 2/Score 6/ER/PR+ HER2/Neu-
Metastatic carcinoma lymph node right axilla.

Looking for what questions to ask as I start this journey. First appointment is with a nurse then 3 weeks until an official Mayo visit. Can anyone share the process on how long it would be before surgery? I am anxious to get this lump removed and next steps.
Please share questions, experiences with a similar diagnosis. Any information you can share would be helpful.

Thank you

Interested in more discussions like this? Go to the Breast Cancer Support Group.

hi , i was diagnosed in october and my surgery was november , stage 3b .I got breast cancer do to radiation as a child from Hodgkins . They radiated my chest . yes radiation will cure you and hurt you later on in life ,hence breast cancer , thyroid removal ,and aortic valve replacement all from radiation when i was 6 yrs old . They can not radiate the same area twice , so they could not radiate my chest . so radiation was out and my choice as far as chemo was a NO thank you ..Heres the best part its going on 13 yrs. Just my opinion chemo kills you not the cancer ,Im proof of it 2x ...I hope this helps you.

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I’m so sorry you have had to begin this journey but you came to a good place for support.

Explore surgical options of lumpectomy or mastectomy. Generally a lumpectomy is followed with radiation but not necessarily with a mastectomy. Reconstruction can begin at the time of mastectomy if desired. Going flat is an option that some women are choosing but many doctors don’t discuss. I chose a unilateral mastectomy with reconstruction and I’m very happy with my decision.

You will want to ask for an ONCOTYPE DX which is an analysis of the excised breast tissue . A score is given which will determine whether chemotherapy will be beneficial in your treatment. At some point ( usually after surgery) because you are Estrogen Positive you will likely be advised to take an Aromatase Inhibitor (AI) which inhibits the production of estrogen. Some are offered this before surgery.

IMPORTANT NOTE: The ONCOTYPE cannot be done if you start the AI before the surgical tissue analysis unless the biopsy tissue was, or can be, analyzed. So be sure to clarify this detail. My post menopausal score of 20 (<25) meant that chemotherapy would not be a benefit in my treatment. <18 is the target score for pre menopausal women.

Self advocacy is very important here; it is an intense and challenging time where big decisions need to be made in short order. Write down all your questions. Take a trusted friend to appointments for that extra set of ears. Get second opinions if you are uncertain and need more clarification.

Educate yourself as much as you can. Breastcancer.org is a good option.

Lots of great strides have been made in treating breast cancer. The ONCOTYPE was born out of a 10 year clinical trial that ended in 2015 and has significantly reduced the administration of non beneficial chemotherapy.

Wishing you the very best on this challenging journey. Come back and ask your questions as they arise.

We are here for you 🌸

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I was diagnosed with 2A Invasive Ductal just before XMas when the surgeons office to which I was referred was closed for the holidays. I was told at my biopsy by the Radiologist to “get the ball rolling “. Here it is Jan. I saw the surgeon now, the Oncologist, the plastic surgeon, the Radiologist next week & my surgery is Feb10
I’ll get the ONCO when they take out the Tumour. All was universal - decision lumpectomy (skin saving for most now a days) and a breast reduction/ augmentation. I had
an MRI nothing in
my nodes but will check out the sentinel
I will be taking radiation and Al no doubt but prob not chemo
I’m no crying nearly
as much now but can’t sleep and have hot flashes since I stopped the the bioidentical hormones. It still doesn’t feel real - like a bad dream it’s like When am I going
to die but chances r now that I’m 66 that it is unlikely to recur (1/2 % over the next 10 yrs) so I’ll die from something else
🙏

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@anjalima

I’m so sorry you have had to begin this journey but you came to a good place for support.

Explore surgical options of lumpectomy or mastectomy. Generally a lumpectomy is followed with radiation but not necessarily with a mastectomy. Reconstruction can begin at the time of mastectomy if desired. Going flat is an option that some women are choosing but many doctors don’t discuss. I chose a unilateral mastectomy with reconstruction and I’m very happy with my decision.

You will want to ask for an ONCOTYPE DX which is an analysis of the excised breast tissue . A score is given which will determine whether chemotherapy will be beneficial in your treatment. At some point ( usually after surgery) because you are Estrogen Positive you will likely be advised to take an Aromatase Inhibitor (AI) which inhibits the production of estrogen. Some are offered this before surgery.

IMPORTANT NOTE: The ONCOTYPE cannot be done if you start the AI before the surgical tissue analysis unless the biopsy tissue was, or can be, analyzed. So be sure to clarify this detail. My post menopausal score of 20 (<25) meant that chemotherapy would not be a benefit in my treatment. <18 is the target score for pre menopausal women.

Self advocacy is very important here; it is an intense and challenging time where big decisions need to be made in short order. Write down all your questions. Take a trusted friend to appointments for that extra set of ears. Get second opinions if you are uncertain and need more clarification.

Educate yourself as much as you can. Breastcancer.org is a good option.

Lots of great strides have been made in treating breast cancer. The ONCOTYPE was born out of a 10 year clinical trial that ended in 2015 and has significantly reduced the administration of non beneficial chemotherapy.

Wishing you the very best on this challenging journey. Come back and ask your questions as they arise.

We are here for you 🌸

Jump to this post

Wonderful advice!

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@journey99 by "sore" do you mean Oncotype score is 6? Was it done on your biopsy specimen?

And are you saying you have one positive lymph node? How do you know?

If your Oncotype is 6, you will not have chemo. Radiation is typical for lumpectomy but often not done for mastectomy. If you have a positive lymph node, decisions may be more complicated.

We could be more helpful if you give us more information. If that is your Oncotype score (6) that is good news! Let us know what the oncologist says.

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I am 71 and had a lumpectomy in December. I am stage 0 cancer free now. I have less than 6 % of recurring cancer, and less than 1% with treatment. I don't know what to do, should I have radiation treatments, medical therapy or what? Can treatments cause more of a cancer risk? I am scared and the doctors only suggest on me taking all this not what is the best for me in my case

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@celica

I was diagnosed with 2A Invasive Ductal just before XMas when the surgeons office to which I was referred was closed for the holidays. I was told at my biopsy by the Radiologist to “get the ball rolling “. Here it is Jan. I saw the surgeon now, the Oncologist, the plastic surgeon, the Radiologist next week & my surgery is Feb10
I’ll get the ONCO when they take out the Tumour. All was universal - decision lumpectomy (skin saving for most now a days) and a breast reduction/ augmentation. I had
an MRI nothing in
my nodes but will check out the sentinel
I will be taking radiation and Al no doubt but prob not chemo
I’m no crying nearly
as much now but can’t sleep and have hot flashes since I stopped the the bioidentical hormones. It still doesn’t feel real - like a bad dream it’s like When am I going
to die but chances r now that I’m 66 that it is unlikely to recur (1/2 % over the next 10 yrs) so I’ll die from something else
🙏

Jump to this post

It’s an incredible hit. A Breast Cancer diagnosis is a traumatic event. I was diagnosed 4 days after exchanging 2022 HAPPY NEW YEAR clinks and celebrating my daughters engagement. Suddenly my world fell flat and I was literally dreaming of being bald at my daughters wedding ( which was in September). My unilateral mastectomy surgery was Feb. 15.

I “met” a woman through telephone conversations, who happened to be the sister of my Primary Doc… she had just received her permanent implants from her bilateral mastectomy ( second surgery) and was nearing the end of her YEAR…( FYI: count on at least a year to get to “ routine” check ups).

Quite unintentionally she offered me these words … which were a profound gift to me. “ Looking back it wasn’t so bad”.

My entire perspective shifted! It’s a devastating diagnosis and the options, although very varied, are all difficult, scary and challenging and yet… here she was … having survived her difficult scary and challenging year and extending her hand of hope to another just starting on the path. We eventually met and we keep in touch and share our progress and our concerns.

We LOOK BACK TOGETHER now.

I look forward to looking back with you and everyone else beginning their journey.

Blessings on the path 💗💗

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@margerite

hi , i was diagnosed in october and my surgery was november , stage 3b .I got breast cancer do to radiation as a child from Hodgkins . They radiated my chest . yes radiation will cure you and hurt you later on in life ,hence breast cancer , thyroid removal ,and aortic valve replacement all from radiation when i was 6 yrs old . They can not radiate the same area twice , so they could not radiate my chest . so radiation was out and my choice as far as chemo was a NO thank you ..Heres the best part its going on 13 yrs. Just my opinion chemo kills you not the cancer ,Im proof of it 2x ...I hope this helps you.

Jump to this post

Did you have surgery 13 years ago? Any diet ?

REPLY

The time after initial diagnosis is stressful. So much information / questions / decisions to make, etc. Though many of our journeys are similar, every one's is different and treatment plan for one person, may not be right solution for others.

Use the advice of others to write down your questions so prepared for appointment.

At Mayo appointment, ask about a Patient Navigator, The did not provide service when I went through Breast clinic, but it is my understanding they are available to help guide you through the process.
https://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education/patient-navigators

You might want to check out this support group for newly diagnosis breast cancer patients scheduled online this week. There is contact / register information in link.
https://connect.mayoclinic.org/event/sisters-newly-diagnosed-breast-cancer-4/?utm_source=connect.mayoclinic.org&utm_medium=email&utm_campaign=digest&utm_content=summary_events_event

There are other support groups, including one on Monday evening via Zoom. It is a large group, but lot of good information. See additional info at: https://connect.mayoclinic.org/event/virtual-breast-cancer-support-group-14/

There is also a Pink Ribbon Mentorship Program , for more info, see:
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/breast-cancer-support-1/

Depending where you live, there may be other support groups.

Laurie

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So very sorry to hear of your diagnosis but so glad you found us. It’s hard to determine next steps as I’m not sure what stage you’re in but I will say you’re in the best of hands at the Mayo Clinic and I have no doubt you’ll have a successful outcome.

It just takes time. ♥️🙏♥️

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