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Topic: Breast cancer and Lyme disease

Forum: Breast Cancer with Another Diagnosis or Comorbidity — Meet others who have breast cancer but also have another health diagnosis/comorbidity such as diabetes, MS, bipolar disorder, HIV or AIDS, Parkinson's Disorder, schizophrenia, etc.

Posted on: Feb 22, 2014 11:14AM

shakespeare wrote:

I was  diagnosed beginning of November and had a lumpectomy dec 23 now awaiting another biopsy on a second lump. 

I am choosing not to have a mastectomy as I am 68 and struggling with a Lyme infection are there any others in my situation. Would also live feedback on the decision not to have a mastectomy 

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Mar 13, 2014 01:56PM Double-Trouble wrote:

I have had Lyme for several years. My Docs suspect it's damage to my immune system has cause a host of diseases to rear in it's wake, including invasive lobular carcinoma stage II and ductal carcinoma in situ.  I'm 45.

I am treating my cancer very agressively and continue a maintinance Lyme protocol.  We'll evaluate Lyme titers at the end of cancer tx and treat accordingly.  Cancer is definitly a bigger fish to fry in my case.

Dx 10/8/2013, DCIS, <1cm, Stage 0, Grade 1, 2/40 nodes Dx 10/8/2013, ILC, 2cm, Stage IIA, Grade 3, 2/40 nodes, mets, ER+/PR+, HER2- Surgery 12/5/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/6/2014 AC + T (Taxol) Radiation Therapy 3DCRT: Breast, Lymph nodes
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Mar 14, 2014 05:46PM MEJ1234 wrote:

I also had Lyme, (do you ever get rid of it?).  5-6 months later diagnosed with invasive ductal carcinoma. I believe my immune system was down because of many factor's, Lyme being one...but would it have happened anyway?

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Mar 21, 2014 04:20PM pamela1204 wrote:

I have Lyme also. My 'lyme family'  believe that the chemo killed it off. ( I hope so ) I have had it for more than 25 yrs, but was not diagnosed until 2011. I went through a year and a half of antibiotic treatment. Last year one month before I was diagnosed with BC, I had taken my last antibiotic for lyme. I thought I was finally going to have a "normal" life,, <<< LOL,, yeah right, because 2 weeks later I noticed an indent in my left breast, and then  lump,,, I honestly thought that maybe my co-infection of bartonella caused a cyst, or the lyme spirochete formed into a ball appearing as a cyst.. I know this is in the IDC forum, but I saw Lyme and just had to post.  

Dx 4/25/2013, ILC, 6cm+, Stage IIIA, 2/16 nodes, ER+/PR+, HER2- Surgery 6/6/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 7/10/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 11/21/2013 Breast, Lymph nodes Hormonal Therapy 12/11/2013
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Mar 25, 2014 12:17AM - edited Mar 25, 2014 12:18AM by Ddkath70

I was wondering if there was a connection. I've heard there is much debate on this subject, but since they are both such prevalent  diseases it's not likely that one causes the other, but more likely that one person has both in their lifetime. 

I had Lyme and Lyme Meningitis back in 2002. Had it pretty badly since it was meningitis. In the hospital for 10 days and had a pik line put it for the antibiotic rocephin. I had to administer myself. From there I also was diagnosed with Fibromyalgia. And went through years of infertility testing. No luck.  Bottom line, I was a barrel of laughs. Lol.

Fast forward to last week when I found a lump, mammo then u/s, few days later biopsy and here I am diagnosed today with IDC. I'm not sure that I can handle a connection to Lyme. All my issues going back to a tiny bug, wreaking havoc on my life for over 10 years. 

The fight has begun....again

Dx 3/24/2014, IDC, 1cm, Stage IIA, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 4/2/2014 Lumpectomy: Left Surgery 4/16/2014 Lumpectomy: Left Chemotherapy 5/28/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 6/17/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 7/8/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 7/29/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 9, 2014 03:49AM heidimclaughlin wrote:

HiI have been a chronic lyme, babesiosis sufferes for 15 years.. with very few intervals between remissions..I strongly believe there is a huge correlation between idc EP+ breast cancer and my lyme.. well, we all know our livers are over loaded between processing the infectious disease elements plus all the meds that need to be consumed. however the liver also tries to dispose of any excess estrogen.. so if it cannot be processed out properly perhaps ian over abundance of it exists in our system.. i am no doctor but there has to be a correlation. so, does anyone know how chemo effects babesiosis or lyme...? does it make it worse. and we all know when we are having our periods our lyme symptoms worsen. how does that play into estrogen and what are the effects of the long term tamoxifen on our infectious disease process? anyone please comment. thank you

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Nov 9, 2014 03:53AM heidimclaughlin wrote:

How have u been since chemo...was it hard with the lyme/ and did your lyme get worse with chemo? i am just starting chemo in about a week. thanks

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Nov 9, 2014 09:55AM savgigi wrote:

I am really interested in this discussion because my daughter-in-law has chronic lyme with erlichiosis, babesia and bartonella co-infections. She has just recently started IV antibiotic therapy. She does not have breast cancer but did have a lump in her breast. A mammogram showed the lump to be a benign condition. She belongs to a Facebook group of lyme sufferers and several women in the group also mention breast conditions.

Dx 1/31/2013, DCIS, Left, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 2/21/2013 Breast Surgery 2/22/2013 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 4/17/2013 Aromasin (exemestane) Hormonal Therapy 9/2/2013 Arimidex (anastrozole) Hormonal Therapy 10/24/2013 Femara (letrozole)
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Jul 22, 2017 08:54PM LymeGirlWithBC wrote:

I have Lyme just had a lumpectomy with Breast Lift and am 52 years old. It is very painful. I would just do the lumpectomy matectomy is very invasive.

I was on a pulsed antibiotic treatment after my Lyme from 2000 tick bite caught up to me and I started to get 6th nerve palsy and lose my vision.

I think the liver not working well cause of Lyme to clear out the estrogen caused the cancer.


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Jul 22, 2017 08:55PM LymeGirlWithBC wrote:

My doc told me chemo kills Lyme. So far no chemo. Just radiation.


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Jul 28, 2017 05:56PM voilalia wrote:

Hello LymeGirlWithBC.

Looks like we're in a similar boat. At 51 yrs old, I was just diagnosed with IDC, waiting on the recommendation from the cancer team for treatment. Diagnosed with Lyme in early 2010 and then again late 2011, but told I was "cured" because of 30 days of doxy each time, but went through the ringer for years later. Anyway, I'm just figuring out what all this means. I'm scared because it has been hard enough just to energy and health with "post Lyme Disease Syndrome" (he wouldn't call it Chronic Lyme), these past years. Just keeping myself functioning at bare minimum so that I can go to work... and to add this scares the pants off me!

Hope you're doing okay!

Dx 7/19/2017, IDC, Left, 6cm+, Stage IIIA, Grade 1, ER+/PR+, HER2- (IHC) Chemotherapy 10/26/2017 AC + T (Taxol) Surgery 5/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Surgery 8/19/2018 Lumpectomy Hormonal Therapy 9/7/2018 Femara (letrozole) Radiation Therapy 10/2/2018 Whole-breast: Breast, Lymph nodes Targeted Therapy
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Oct 13, 2017 11:49PM tkalen wrote:

I don't know how many times during treatment I commented that I wasn't sure if I was experiencing side effects because I'd had some of the same issues off and on for years. Peripheral neuropathy, joint pain, etc. ... right down the list. I am almost 2yrs post-chemo and still have some "symptoms". While I don't know if the degree is less than pre-chemo, it *is* less than during chemo. So, now I'm wondering if I've been struggling with undiagnosed Lyme disease since before the cancer dx, if there is any way to tell, and does it matter whether the issues come from cancer or a tick bite?

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Oct 14, 2017 12:07AM CIW wrote:

tkalen-

I have had lyme disease for 3.5 years (I have late stage neurological lyme disease) and it is awful. I truly believe it led to me getting breast cancer, especially since I'm pretty young (31).

Anyway, a lot of the standard lyme disease testing isn't always accurate. The best way to get a definitive test is to go to a lyme literate doctor and get the blood tests there. The typical "western blot" test that you get at a standard doctor isn't always accurate and can give false negatives. That happened with me and I saw 14 doctors before getting diagnosed. If you are truly worried about it, I'd google lyme literate doctors in your area and make an appointment.

Do you still have fatigue? That can be another big one with lyme.

Dx 7/21/2017, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/7/2017 Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy 9/18/2017 AC + T (Taxol)
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Feb 2, 2019 05:52AM Ella77 wrote:

Hi I have Chronic Lyme disease and all that goes with that. I have just been diagnosed with BC and am under going more tests to see what type of surgery and treatment I'll need. Can anyone tell me if they managed not to take steroids? If in fact the chemo did kill of the Lyme? How they managed radiation/chemo? I've been sick for 12 years, been in treatment for Lyme for 2 and was finally getting my health back. So trying to get a picture of what this next year will look like. All feedback would be very welcome. Thank you.

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Apr 28, 2019 02:27PM Spoonie77 wrote:

Ella - I've had Lyme (co-infections/immune issues) for most of my life, since I was a teenager. Then was dx last year with BC. Didn't have chemo, but have suffered terribly through RADs and the SEs from it. (Fibrosis, Breast Lymphedema, Rib Dysfunction, and now severely low WBC) I go in for an Abdominal CAT Scan this week. They are concerned about my organs.

Sorry you have this all going on, on top of the BC. It really isn't fair. I hope you are managing so far.

As to your questions, there isn't a test currently that can ever tell us when all of the Lyme bacteria is gone. So, unfortunately we just don't know. I have no idea the effects of Chemo on spirochetes, but I'm sure it can't be helpful to them.

It's been 6 months since RADs finished, and I'm still dealing with pain/SEs daily. I go to PT and Acupuncture weekly. Also have to do PT (LMD massage/compression/etc) at home for 45 mins daily plus at least 6-8 hours of compression to manage my symps. The hormonal treatments haven't been great (Tamoxifen 5mgs daily). Lots of SEs. But I knew going into this, like you mentioned, having tons of health issues things would get rougher before better.

I'm hopeful that next year this time, I'll have made alot more progress.

How are things with you now?

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Jul 25, 2020 11:44PM - edited Jul 25, 2020 11:47PM by KARW41

I found this older post. I also had late stage Lyme disease and also Bartonella from tick bites in 2014 and 2017 respectively.

I got extensive DCIS and lumpectomy and then bilateral mastectomy in 2020.

I had treated the Lyme in 2014 with multiple oral antibiotics at one time while working in Germany, followed by herbs recommended there.

Then, in 2017, I got diagnosed with Bartonella after another tick bite.

I am guessing the immune system and Lyme/Bartonella may have something to do with the breast cancer, but I am not sure.

My mother had breast cancer three time but I didn’t have any cancer genes based on genetic testing.

I believe I had read Bartonella may also be tied to lumps and breast issues.

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