1. < Blood Cancers & Disorders

Common Variable Immune Deficiency (CVID) and Breast Cancer

Posted by katrina123 @katrina123, Jun 21, 2020

Does anyone else have this immune disease plus breast cancer?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 22, 2020

Hi @katrina123, I added your message to both the Breast Cancer group and the Autoimmune Diseases group so that more members may see your message.
This article from Mayo Clinic explains:
- Common variable immunodeficiency https://www.mayoclinic.org/diseases-conditions/common-variable-immunodeficiency/symptoms-causes/syc-20355821
"Common variable immunodeficiency (CVID) is an immune system disorder that causes you to have low levels of the proteins that help fight infections. If you have CVID, you'll likely have repeated infections in your ears, sinuses and respiratory system. You'll also have an increased risk of digestive disorders, autoimmune disorders, blood disorders and cancer. CVID can be inherited, or you can develop it during your lifetime."

According to the NIH, "Individuals with CVID also have a greater than normal risk of developing certain types of cancer, including a cancer of immune system cells called non-Hodgkin lymphoma and less frequently, stomach (gastric) cancer."
- Common variable immune deficiency https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency

Regardless of whether CVID caused you to have higher risk for breast cancer, I suspect your medical team are watching you closely during treatment due to your body's reduced ability to fight infection. Has this impacted what type of chemotherapy you are able to have? Are you being treated with chemo?

REPLY
2 replies
katrina123 | @katrina123 | Jun 22, 2020
In reply to @colleenyoung "Hi @katrina123, I added your message to both the Breast Cancer group and the Autoimmune Diseases..." + (show)
@colleenyoung

Hi @katrina123, I added your message to both the Breast Cancer group and the Autoimmune Diseases group so that more members may see your message.
This article from Mayo Clinic explains:
- Common variable immunodeficiency https://www.mayoclinic.org/diseases-conditions/common-variable-immunodeficiency/symptoms-causes/syc-20355821
"Common variable immunodeficiency (CVID) is an immune system disorder that causes you to have low levels of the proteins that help fight infections. If you have CVID, you'll likely have repeated infections in your ears, sinuses and respiratory system. You'll also have an increased risk of digestive disorders, autoimmune disorders, blood disorders and cancer. CVID can be inherited, or you can develop it during your lifetime."

According to the NIH, "Individuals with CVID also have a greater than normal risk of developing certain types of cancer, including a cancer of immune system cells called non-Hodgkin lymphoma and less frequently, stomach (gastric) cancer."
- Common variable immune deficiency https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency

Regardless of whether CVID caused you to have higher risk for breast cancer, I suspect your medical team are watching you closely during treatment due to your body's reduced ability to fight infection. Has this impacted what type of chemotherapy you are able to have? Are you being treated with chemo?

Jump to this post

@colleenyoung
My breast surgeon and my oncologist decided against chemo for me. Prior to my lumpectomy I had 4 surgeries in 3 years so I think it was probably the best decision. The breast surgeon also did not want me to have my lymph nodes removed but instead chose to have them radiated. The breast cancer I had is quite rare and is more likely to metastasize through the blood rather than the lymph nodes. I had a combination of skin and glandular breast cancer. My concern is that I had neural invasion and from what I understand there is not a lot of research regarding neural invasion and breast cancer. Yes my oncologist will be watching me quite closely. She said that she wants to see me every 3 months. On a positive note I infuse immunoglobulin every day so hopefully that will help protect me.

REPLY
1 reply
katrina123 | @katrina123 | Jun 23, 2020
In reply to @colleenyoung "Hi @katrina123, I added your message to both the Breast Cancer group and the Autoimmune Diseases..." + (show)
@colleenyoung

Hi @katrina123, I added your message to both the Breast Cancer group and the Autoimmune Diseases group so that more members may see your message.
This article from Mayo Clinic explains:
- Common variable immunodeficiency https://www.mayoclinic.org/diseases-conditions/common-variable-immunodeficiency/symptoms-causes/syc-20355821
"Common variable immunodeficiency (CVID) is an immune system disorder that causes you to have low levels of the proteins that help fight infections. If you have CVID, you'll likely have repeated infections in your ears, sinuses and respiratory system. You'll also have an increased risk of digestive disorders, autoimmune disorders, blood disorders and cancer. CVID can be inherited, or you can develop it during your lifetime."

According to the NIH, "Individuals with CVID also have a greater than normal risk of developing certain types of cancer, including a cancer of immune system cells called non-Hodgkin lymphoma and less frequently, stomach (gastric) cancer."
- Common variable immune deficiency https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency

Regardless of whether CVID caused you to have higher risk for breast cancer, I suspect your medical team are watching you closely during treatment due to your body's reduced ability to fight infection. Has this impacted what type of chemotherapy you are able to have? Are you being treated with chemo?

Jump to this post

I saw the autoimmune group but because CVID is not an autoimmune disease I wasn’t sure that it belonged there. The disease that I have is a primary immune disease. I am missing part of my immune disease.

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katrina123 | @katrina123 | Jun 23, 2020

I should have said that I am missing part of my immune system.

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katrina123 | @katrina123 | Oct 3, 2021
In reply to @katrina123 "@colleenyoung My breast surgeon and my oncologist decided against chemo for me. Prior to my lumpectomy..." + (show)
@katrina123

@colleenyoung
My breast surgeon and my oncologist decided against chemo for me. Prior to my lumpectomy I had 4 surgeries in 3 years so I think it was probably the best decision. The breast surgeon also did not want me to have my lymph nodes removed but instead chose to have them radiated. The breast cancer I had is quite rare and is more likely to metastasize through the blood rather than the lymph nodes. I had a combination of skin and glandular breast cancer. My concern is that I had neural invasion and from what I understand there is not a lot of research regarding neural invasion and breast cancer. Yes my oncologist will be watching me quite closely. She said that she wants to see me every 3 months. On a positive note I infuse immunoglobulin every day so hopefully that will help protect me.

Jump to this post

I just noticed that I said 4 surgeries in 3 months that should have read 4 surgeries in 3 years

REPLY
1 reply
Amanda Roe | @amandajro | Oct 3, 2021
In reply to @katrina123 "I just noticed that I said 4 surgeries in 3 months that should have read 4..." + (show)
@katrina123

I just noticed that I said 4 surgeries in 3 months that should have read 4 surgeries in 3 years

Jump to this post

@katrina123 I have updated your original post to reflect this correction.

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nancyjhg | @nancyjhg | 2 days ago

Hi Katrina. I have Common Variable Immune Deficiency as well.

Did you go to the Mayo Clinic Primary Immunodeficiency Center in Minnesota? I'm thinking about going there.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | 2 days ago
In reply to @nancyjhg "Hi Katrina. I have Common Variable Immune Deficiency as well. Did you go to the Mayo..." + (show)
@nancyjhg

Hi Katrina. I have Common Variable Immune Deficiency as well.

Did you go to the Mayo Clinic Primary Immunodeficiency Center in Minnesota? I'm thinking about going there.

Jump to this post

Welcome to Connect, @nancyjhg. While you’re waiting for a response from @katrina123, I’m just going to jump into the conversation for a moment. You mentioned that you are thinking about going to the Primary Immunodeficiency Center in Rochester. Here is a link to get you started! Click here and then follow the prompts to request an appointment.
http://mayocl.in/1mtmR63
Having a chronically deficient immune system can leave you pretty vulnerable to infections and other illnesses. Have there been any seriously complications for you?

REPLY
katrina123 | @katrina123 | 2 days ago
In reply to @nancyjhg "Hi Katrina. I have Common Variable Immune Deficiency as well. Did you go to the Mayo..." + (show)
@nancyjhg

Hi Katrina. I have Common Variable Immune Deficiency as well.

Did you go to the Mayo Clinic Primary Immunodeficiency Center in Minnesota? I'm thinking about going there.

Jump to this post

nancyjhg,

No, I have never been to the Mayo Clinic. I saw a pulmonologist because I could not recover from a serious lung infection and she referred me to a clinical immunologist here in Oregon. I now do self-infusions of 1 gram of Hizentra a day at home.

I have always heard positive remarks about the Mayo Clinic. I am sure that you would be in good hands.

Katrina123

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