Breast Cancer and an Immune Deficiency-CVID

fleur-de-lis

Hi Ladies,

It has been several years since I have posted on this forum, although I lurk here quite often...much more so recently,as I feel that I have some decisions to make in the near future

A bit about my past:

In 2009 I had a 7CM Phyllodes tumor removed, luckily it was benign, but on the last slice/slide it was loaded with atypical cells. Phyllodes tumors are staged differently than other breast tumors. The margins were clean and I am almost 5 yrs out from that situation

They also found some ALH and ADL on a biopsy 18 months later...in the same breast

The left breast constantly develops a cyst that requires aspiration.....one of the reasons that we choose to do this is the cyst is in a place which is rather uncomfortable when I wear a bra, as well as to check on the fluid in the cyst...this cyst has never given reason for concern per MRI and ultrasound, but neither did the Fibroadenoma which developed into a Phyllodes tumor back in 2009....it should be mentioned that this Phyllodes tumor grew so quickly that it was unnoticed by myself, or the MRI/Ultrasound  combo which had been done just two weeks earlier! Phyllodes can grow rather quickly.....but this one also contained cells not typical of this type of tumor....and, yes, since Phyllodes are rare, it was sent out to another Pathologist for a second opinion

Now I have a rather busy left breast after many quiet years....recently developing significant fibrocystic disease in that breast only ....this was the situation verbatim in the right breast prior to the arrival of the Phyllodes tumor...the Fibro changes in only one breast

If they have to do many more biopsies, I will not have much breast tissue left, as I was always flat chested...I would have pursued breast augmentation with small implants, but was always concerned about what might happen...figured I should count my blessings and move on( or wait for fat transfer to become perfected)

I also have multiple family members on the maternal side who have had BC or Ovarian Cancer...my mother passed from Ovarian cancer....I have been to a geneticist and luckily tested BRCA1+2 negative....several other mutations were tested for, PTEN, others....negative

On the GAIL model, I am right about at a 40% risk

I also carry the Factor V Leiden gene, so I am a genetic clotter...so hormonal blocker treatments are out

A PMX would seem to make the most sense...but I am fearful due to my immune dysfunction

I receive gamma globulins weekly ( pooled B cells from donor blood) and maintain quite good levels with this treatment....but we are talking a tough surgery here as well as the risk of infection during the TE process, etc Flap surgery would be even tougher, and I do believe that the Factor V Leiden makes the chance of a flap failure all that much higher

So I am wondering if there are any other souls on this forum who might be dealing with this( the actual term for the condition is "CVID- Common Variable Immune Deficiency")

I have discussed this with my immunologist and Infectious disease doctor( I feel like I have a staff of doctors) and both concur that a PMX would be much wiser, and hopefully easier overall than taking on Cancer at a later date, with Chemo and reconstruction surgery being tougher on a person who is already dealing with a chronic condition

Anyone else here dealt with, or dealing currently with, something like this?

Hope to hear from someone!

clarkjennifer

Hi,

CVID or Common Variable Immune Deficiency is "humoral immune deficiency". It is really a very disturbing disease that is susceptibility to infections as well. My neighbour had this disease and she gone through a immune globulin replacement therapy. I hope you get well soon.

fleur-de-lis

Hello Jennifer,

Thanks for replying to my posting,

Yes, I am aware that it effects humoral immune response.Thanks also for your kind words and well wishes about the condition

Actually CVID is related to both B cell as well as T cell issues...I say "issues" because it varies from person to person .....this may be related to germ-line genetic mutations or somatic mutations acquired/polymorphisms during the life time due to infectious agents, chemical exposures..etc. 

Various other factors might be affecting the immune status at any one time ...for example, I have not had any real problems in several years, sailed thru a recent surgery, etc....then my father passed away suddenly around Christmas and the emotional stress, as well as dealing with his estate issues, caused a drop in WBC and I have been fighting off a major sinus infection since....I have not been ill "in any way"  for over 5 years prior to this stressor.

I am 52 yrs old and have been dx.ed for over 10 yrs, treated with IVIG originally, and now I am stable on sub-a gamma globulins....you never are "cured" of this condition as it is "chronic"I will receive gamma globulins for the rest of my life...

I was hoping to connect with someone here with the condition and who also deals with BC or high risk ratings

Perhaps I will need to contact the Primary Immune deficiency  foundation and see if they can connect me with anyone who shares my situation

drento76

Hi Fleur-de-lis,

I have PID mine is Selective Antibody Deficiency and I was just diagnosed with stage 1 breast cancer. I would love to hear how you are doing and if you were able to find a doctor that knew how to deal with both at the same time.

Spylab

I have never come across someone else with some of my same conditions so I had to write!  I have CVID and have been receiving IgG since 2006.  I was hospitalized with a DVT earlier in 2006 and found to also have Factor V Leiden.  Today I am resting with 2 ice packs on my left breast from biopsies done yesterday. They brought me in for microcalcifications and during that he noticed another area of concern so they did more 2D and 3D mammo films then sent me to sono then back to the table for biopsies of the new site on the same breast.  18 months ago I had surgery on my ankle and at the first follow up visit found to have a wound infection so another PICC line (5th one for me). So I am concerned about the possibly of needing a mastectomy and found your post. I also have Hemaglobin F and Fuch's Corneal Dystrophy and Ankylosing Spondylitis....all can be genetically linked.  I can't take the usual treatment for the Ankylosing Spondylitis because it wipes out the immune system, so I was wondering what approach is taken for treating breast cancer in patients such as we are.  I am still waiting for my biopsy reports but like to have as much info as possible. My ankle surgery did not turn out well and I am worse off after than I was before and now have to use a scooter so the thought of surgery concerns me.

janetanne

WOW! What a treat to see someone with CVID and BC. For many years I was also diagnosed with Chronic Fatigue Syndrone, and Fibromyalgia. MY CVID goes back many, many years, but I only got diagnosed with this IgG deficiency, and started treatment May, 2012. Most likely this is why I am still alive. MY BC was diagnosed with Ductal BC 2/2002, had Mod, Rad, Mastectomy, chemo & Radiation. After getting fairly crazy on Tomaxifin, I stopped it. 3/1005 5 tumors were found on my spine with 2 more on my right hip, hard Aradia IV then Radiation, followed by 5 years of Aromasin. Then in 2011, a bone scan showed more in the bones. In 1/2012 more was founfdin my lungs, and many more in the bones. Since then it has been the routine many of you must know, having to try different pills before they can do chemo. For a little over 2 years of different chemos that did not work, but may have slowed the cancer cells. Then again I am still here 4 years later, a total of 14 years from my initial Diagnosis. After switching Oncologist, a few more chemo were tried but then I was transferred to Afinitor combined with Aromasin (Exemestene). It is hard to know what is age, what is CFS, Fibro, CVID infections, the CANCER, or the Drug. While many talk about Quality of Life, I have few really pay any attention. Unlike the 1st 2 rounds this cancer is not going to go away. I AM SO GRATEFUL FOR THIS ORGANIZATION! WHAT A GIFT TO CONNECT WITH YOU ALL. FOr 3 years I could rearely go to the grocery or pharmancy. Another gift was someone, not Oncology, suggested Palliative care. Finally a doctor who talks, listens, AND UNDERSTANDS ME! She is the one who suggested I try a very small dose of an ADD drug, which has allowed me to function for short periods, with the best benefit being the ability to finish each small project! OK, I have gone on long enough!!! There are so many untreated parts to this Stage !V that appear to be as much ignoring. Here I am at 74, with the first 9 1/2 years oyf Cancer being treated Very WELL in Bosnia/Croatia, returning 4 years ago. The last 4 months I have been able to volunteer professionally at a Men's Homeless Medical Shelter. It is very up and down living, with damage from the drugs getting worse. Time for more decisions. Thanks you all for your sharing your experience, strength and hope. Janet Leff

Skate62

I am wondering how you are doing. I was diagnosed with CVID three years ago, although I had a bad reaction to my first IVIG treatment. So far since then, my immunologist and I go over my infection diary every six months and I have been able to hold my own. I also have BOOP (Bronchiolitis Obliterans Organizing Pneumonia). I was diagnosed in February with DCIS, high grade, ER positive and have had a biopsy and a lumpectomy with clear margins and no nodal involvement. Initially the radiation oncologist was all in for a short course of radiation (16 treatments), but when I went to a University for a second opinion, I mention that I had seen something called "radiation induced BOOP" and let them know that it was a two-year battle to recover from the BOOP, which has never completely cleared up. I have triggers that get it going, and it's "steroid time" again, sometimes as long as six months. These docs suggested "Do nothing, consensus of the radiation oncologist" which made me nervous. Am trying to get a third opinion to break the tie. I didn't want to do Tamoxifen because I also have MCS (Multiple Chemical Sensitivity Syndrome) and am terrified of getting chemicals in my system for five years.

I have no idea what to do, am hoping that you are doing well and if you have time, would you share your story, and/or any other folks that have CVID and/or BOOP. Thanks.

MaineCoonMama

I have had an immunity deficiency for many years. I have hypogammaglobulinenemia, sometimes called CVID. I have been going to the retreats with the Immunity Defense Foundation for several years. I get my infusions of IVIG every month at an oncology treatment center. So when a tumor happened to show up on my yearly routine mammogram, I had all the reports sent to my doctor at the oncology clinic. I figured, if I had cancer, that was the place I would want to go. Well, it was cancer, TNBC, and during the double mastectomy they also discovered a lymph node tumor and another kind of breast cancer in the other breast. I was the poster child for a healthy lifestyle all my life...exercising, eating healthy, no drugs, et...it should not have happened. I did not need another challenge. I did not need to belong in another "club".  They removed 10 lymph nodes and I had reconstruction at the same time. Chemotherapy followed and then radiation. I told them I wanted it all gone and I wanted the works as far as treatment went. My last treatment was in May. It's a tough road when you are already struggling to stay alive with another disease, how much can one person take?  I am working hard right now to build up my stamina and strength, hiking 5 miles every day with trekking poles to keep my arms functional and keep lymphedema from occurring. My husband stretches the cording and scar tissue in my arms every tight.  I have a "happy" pill I take every morning and another to help me sleep. My beautiful long brunette hair is gone, but now I have a curly flat-top of hair returning. I am a teacher, and thank goodness, I worked during my treatment, it kept me from thinking about all my problems all day long.  I had to learn to say NO to some things, and to put myself first, which went against my nature.

I know what you are going through. It's just all too much. I hope that you find a way to organize all your symptoms and doctors with everyone working on the same page.  I know about the steroids-they put 10 pounds on me!  Towards the end, when I got my IVIG, my body told me, "Whoa, now! That's enough chemicals!"  And like all breast cancer survivors-we worry about the cancer coming back. Make a list of the things that make you happy, that you like to do, people you like to see, things you like to eat. And make a list of the things and people that make you feel crappy.  Try, over time, to do more of the happy things than the crappy things. Clean out a drawer. Go get a donut.  Hold a door for a stranger. Enjoy that really crispy sweet apple. When I stated to make a list everyday of anything that happened good during the day, I began to see, gee, it wasn't such a bad day after all!

JFV

Hi ! Just found out yesterday I have CVID. I got my diagnosis after multiple sinus infections. I am 6 years out from double mastectomy, ACT chemo and radiation. I had one UTI during treatment and it responded to antibiotics quickly.

I do not know if I have had CVID all my life or if it is from chemo as my immunologist says. My gut tells me I've had it all my life and chemo and menopause made it worse.

I have spoken to my oncologist. She and I talked about my increased risk of lymphoma. She says we will follow my CBC count closely.

I am still stunned by the news.

fleur-de-lis

hello ladies,

I had not been back on the forum until recently....my father died and I was busy with the estate and such

Plus, all things "boob related" have been "all quiet of the western front", as they say...many years of normal MRI's and Mammos and US.......well, that was until two weeks ago, when I received a Bi-Rads4 results from my last MRI

I looked up the lexicon, and it is not in my favor, statistically speaking....I get the biopsy tomorrow...so will find out soon.

I am really concerned due to my immune system and low WBC count....even without the biopsy results...I am trying to get my ducks in order, so to speak!

I am so thankful that you have shares some of your stories with me....I may have more questions for you as time goes on...

I did not get notification that there were responses to this thread...but I may not have set up that on my profile...will need to look into it

JFV

Hi fleur - Sorry to hear your bad news. By now you have had your biopsy. How did it go ? When diagnosed with my BC, I had no idea I had CVID. I did call my Onc when I found out I had CVID. She did say she would follow my blood work a little closer since my DX shows a correlation to cancer particularly lymphoma and stomach cancer. I have looked around for studies regarding BC and immune deficiency and haven't found much. If you have the energy you may want to get a second opinion with another immunologist. I will start treatment soon with my current immunologist but plan to go for a second opinion with a specialist in the next couple of months just to ease my mind. Sending good thoughts your way