DX.ed with ALH back in 2009, now dealing a pulling sensation

fleur-de-lis

I "know" that this query really belongs in the high risk section of the forum, but, with ALH, LCIS and ILC being a some what rare ( 5-10% of all BC) and misunderstood area of breast neoplasmas.....I wanted to come to this section, due to the knowledge and experience that the ladies who post here have. I should mention that I have "lurked" in this section off and on for years due to my DX of ALH in 2009.

I had a MRI assisted core biopsy on my left breast two weeks ago, as is common in many BI-RADS 4 findings, it was benign issues that pathology noted..depending on your medical researcher and their theories, some of the benign changes could become an issue later on...but that is not why I mention this.

It is my right breast that is the issue now...it was not biopsied two weeks ago, although there were some changes noted on the current MRI that were not seen a year ago....the report stated that there was an area in the upper outer right breast at a far posterior depth of non-mass like enhancement which is of increased conspicuity compared to prior MRI's. Area is 10mm. Minimal background enhancement noted

The radiologist decided to follow-up on the findings in 6 months.

This is the same breast that had a 9CM Phyllodes removed in 2009, they did find a small area ( 3mm) of ALH in the tumor, which would have been removed with the excision of the tumor. In early 2010, they did a stereotactic biopsy on the same breast....an focal area of 1.5mm of ALH was found.

I never pursued SERMS, with a genetic clotting disorder, Factor V Leiden, those are contra-indicated.

The last week , or so, I have been noticing what could best be described as a pulling sensation in righty....and, although this sounds strange, an achey feeling, kinda like something is "squeezing" the breast? I have never had breasts sensations like this....nothing like the typical fibrocystic pains in my pre-menopausal years.

Actually, since menopause, I have not had any breast pain, all tests ( Mammos,US, and MRI's) since 2010 have been normal.....and now this 6 years later.....perhaps the ALH is advancing? Although I just had the MRI, I am aware that LCIS and such does not show up "easily" on standard tests.

So, my question Is this???

A) Could the core biopsy on the left breast "stir up"the lymph system or nerves on the right side and cause this sort of thing?

Call the BS if the sensations do not stop in the next week or so?

I have read that a pulling sensation is sometimes felt with LCIS and ILC.....has this been your experience?

Many Thanks for reading this😎

MelissaDallas

I never felt anything and my LCIS was noted on my MRI

Wicked

I have both LCIS and ILC and never felt any "pulling" sensation.

fleur-de-lis

Thanks Ladies for your reply😀

When I was reading up on ALH and the typical timeframe in which it "might" convert into something a little further along the neoplasm line......I came across a paper with radiology findings (the MRI pictures and mammogram shots) describing how some of the breast tissue was quite literally "pulling away"from the chest wall towards the nipple area. I cannot find it to post it here....my computer had technical problems and I had to delete my recent history to deal with the issue.

We all know( sadly...😣) that the inverted nipple "can" be a sign of breast neoplasm...and some women mention a "pulling feeling with the nipple inversion?

I think the poster here "Leaf" mentioned something about it in one of her posts? I believe she has LCIS

leaf

I replied to you via private message. When I had my lumpectomy for classic LCIS, my surgeon was visibly looking for indications that something was pulling physically, which would often be a sign of ILC. ILC often grows in sheets, rather than in lumps (which typically happens in IDC).

Normally, anyone with breast changes should be looked at by a physician. But it sounds like you've done that? Assuming your MRI was of both breasts, MRI is about the most sensitive thing we have going for breast monitoring, though of course there are false negatives with MRI. Mammos and ultrasounds should NOT be replaced by MRI though, because they see different things.

The sensation of breast pulling may be classified under breast pain, which is quite common. It is UNCOMMON for breast pain to be caused by breast cancer; usually it is for some other reason. Often we can't find the reason. But it sounds like you've had a biopsy on that breast? That can cause breast nerve damage, which can make strange sensations. I had 'zingy' sensations for years after my biopsies (they tapered down in frequency over time.)

If you have concerns, and have NOT reported this pulling sensation with your doctor, you may want to call your doc, but if you've had an MRI of that breast, I'd be somewhat surprised if they want to do a mammo or ultrasound.

We don't know how many women are walking around with ALH or LCIS and don't know it because they've never had a breast biopsy of that area, let alone any breast biopsy. Even if it is ALH or LCIS, the majority of women with ALH or LCIS NEVER go on to get breast cancer.

fleur-de-lis

Thanks Leaf, for this reply as well as the PM....I did not have the time to reply prior to this.

My most recent MRI guided core biopsy was on my left breast in August of this year( 2016) among the benign findings of that breast was a Hemioanginoma. Another "odd" finding for me, as I had a large 9cm Phyllodes removed from my right breast in 2009. Both unusual growths were benign, thankfully, but it was mentioned that my breasts like to grow sarcoma type "items"😡 By my Hemotologist... He is quite the little character, isn't he? He predicted the core biopsy would find this sort of thing, when I shared this with the radiologist this prior to the biopsy, she did not believe this to be the case... Plus one for the Hemotologist/ MO.

It should be noted that I never had any unusual sensations in my right breast with the Phyllodes, nor did I have any unusual sensations with my left breast with the Hemioanginoma.

Back in 2009, on the deepest plane/ slice of the Phyllodes, there was found 3mm ALH. In 2010, a stereotactic biopsy was preformed on that same right breast due to a moderate uptake of MRI contrast in the margin/ scar area of the removed Phyllodes. Findings were the typical benign issues and a small area 1.5mm of ALH. They did not go back in to excise the area, as they felt that they removed it with all of the tissue they took during that series of biopsies. I actually lost about half a cup size in that breast. My MO at MDA shared with me that she had never seen a Phyllodes tumor without some ALH findings.

This is the same ( right )breast that is having the pulling/ tightness sensation currently. Although weight lifting exercises that effect the Pec. Muscles can produce weird sensations in that breast, the sensations are always the same, and they have never been like this. Never had this sort of pain/sensation in either breast, ever......that's why I found it to be quite unusual. Nothing has changed in my weight routine in quite some time.

I saw my BS last week, and if this strange sensation does not resolve in 6-8 weeks, we will re-visit the issue. Of note, when he reviewed the MRI slides with me, nothing has really changed over the last few years, but there was a extreme increase in uptake of the contrast in the same areas that were found to be benign in the past studies.

I deal with a co- morbidity that can effect the way in which my body presents with disease, as I have Common Variable Immune Deficiency. I am infusing Hizentra, sub-Q, weekly. I have had many, many cases of pneumonia that do not "present" in the normal manner due to this....no fever, but my lung x-ray shows the tale. So one always has to consider a unusual presentation of disease in someone like me. Due Diligence my middle name🤔😎

If I have repeated myself here, as I am on my iPhone, and cannot seewhat I posted previously....sorry!

Cowgirl13

so glad you saw your surgeon. As I was reading this thread I was going to strongly suggest the same things. Sounds like you are in excellent hands.

leaf

I'm so glad you saw your breast surgeon too. I'm so glad you're seeing the people at MDA. It sounds like with your Common variable immune deficiency you could present with atypical symptoms. I'm so glad your doc is keeping a close eye on you.

fleur-de-lis

, well, I thought I would follow up on this thread......over the last few days the area in which I was experiencing a pulling sensation has now developed rather quickly into a good sized lump. Just had an US this AM and it sure looks like another Phyllodes tumor.....wish me luck, as sometimes these creepy neoplasms come back more aggressive than this first tumor. With my first Phyllodes, I felt no such sensations. I will get this newest uninvited tumor removed next week , if my CBC Counts allow.

Previous tumor had ALH hiding out in it's core, wonder what might be found this time around?