LCIS and sore lymph nodes?

seltzer · March 2009

Was diagnosed with LCIS and had an excisional biopsy on left side. My lymph nodes on the left have been very very sore for years. Now both sides really hurt a lot. Considering a PBM in late April and trying to decide about the nodes. At first the surgeon advocated tamoxifen and watchful waiting, but now she seems eager to do a SNB on both sides.

Is a sore lymph node a suspicious lymph node? I have been tracked closely for fibrocystic disease and this enlarged, palpable left node (or two) since I was 30. They keep doing Ultrasound of the left armpit--can they really tell anything from that? I am perimenopausal.

Saw the plastic surgeon today and he seemed to know so much less than I did about LCIS I was really shocked...

I am so grateful for this LCIS discussion. I never could have sorted out the information on the web without it. Thanks for any help you can offer.

leaf · March 2009

"painful lymph node + LCIS" brings up no hits in Pubmed.

As they say, breast cancer does not read books, so just about anything is possible.

Here is a case report of a person where a painful lymph node was the sole symptom of breast cancer. There is no information that the person had LCIS. http://www.ncbi.nlm.nih.gov/pubmed/18798593

But before this scares you to death, notice it is a CASE REPORT. That means 1 person. I didn't bother to look through all 200+ entries, but after looking at several pages, I saw they were looking at various aspects of SNB, not painful lymph nodes as a symptom of breast cancer.

I was really shocked when I went to a major institution, and I initially saw a NP. I certainly knew more about statistics than she did. I wish the surgeon would have given me more of a clue how very little we know about breast cancer risk statistics. Both my breast surgeon (who I do not care for), and this major institution recommended no BPMs for me, and no MRIs. (I have LCIS, ALH, and nothing worse. I'm currently on tamoxifen.) I have a weak family history.

It seems many women here are recommended to have BPMs for LCIS and nothing worse. But, then, almost everything in LCIS is controversial.

So,in conclusion, I would say its certainly POSSIBLE that your painful lymph node is a symptom of breast cancer, but it is UNLIKELY for breast cancer to present with solely sore lymph nodes.

seltzer · March 2009

leaf: Thank you so much for your message. You inspired me to get onto a library research database and that has made me feel more in control of this.

You mentioned a weak family history: I see a genetic counselor next week, but the problem is my mother died of BC but did not get help until the tumor was the size of a grapefruit and 22/24 lymphnodes were involved. I was too young when all that happened to ask when she went through menopause and I have only put together now, 25 yrs later, that she probably had it for a long time before she got help.

And then I hardly know what other relatives died of--there has been a lot of early death, but no one mentioned BC, but we are Irish Catholic and no one spoke about anything growing up.

My path report says lobular neoplasia I and II, and ALH

Thanks so much for your help.

leaf · March 2009

It is good that you are seeing a genetics counselor.

My family history is probably weaker than yours -I had a postmenopausal paternal grandmother who only had sons, and a postmenopausal maternal aunt.

I would encourage you to read this editorial to get some idea how little we know about breast cancer risk.

http://jnci.oxfordjournals.org/cgi/content/full/98/23/1673

If this is the situation with the Gail model, you know there is less information for LCIS women; LCIS women are automatically excluded from the NCI Gail model calculator. http://www.cancer.gov/bcrisktool/

I would, of course, get your lymph nodes checked out, though. I know its impossible not to worry, but we are here for you.

seltzer · March 2009

Leaf--

thanks for this. That article on risk tools is quite an eye opener. It also confirms that many of the doctors I talk to seem pretty unprepared to talk about LCIS. I finally got an appt with the oncologist-- she is the director of the Breast Center and answers emails. So things are looking up. Oncologists should be good at thinking about lymph nodes, I would think, since they deal with the immune system. I figure I can slow down, try tamoxifen for a while (despite the stroke risk) and give myself more time to figure out the whole picture.

I found an article last night that emphasized the ALH plus ADH was the only important category.for higher risk on LCIS.

I am lucky that I had an MRI, so that should provide some reassurance that there is no invasive cancer hiding in there unseen yet.

thanks so much for taking the time to help me get good information.

Mykidsmom · March 2009

Seltzer - I can't help you too much except to say that I have had a couple of occasions where my lymph nodes swelled and were sore, and neither was cancer or related to the LCIS. Also, though very good, my PS doesn't know anything about LCIS. I found that the oncologist had the most information about the dx. I think you sound like you have done your homework and are comfortable w/ the close monitoring. That's great. As Leaf said, this is a wierd dx. Best wishes my dear! - Jean

seltzer · March 2009

They are going to do another ultrasound of my lymph nodes in a month, no BRCA testing, I came out at 41% on the Gail model with the genetic counselor.

Friday I see the oncologist, but I am feeling more doubtful about tamoxifen again after re-checking my stroke risk ( 3 grandparents; father died at 47 of heart disease; brother with stroke at 47/died at 57) .

Are there any other pre-menopausal hormone therapies? are there similar problems with stroke with the arimidex, etc?

Mykidsmom · March 2009

Seltzer - Sorry, I can't help you w/ the pre-menopausal hormone therapies. I think tamoxofin is the one that is generally used for pre-menopause. I was post-menopause when the LCIS was dx'd. I did ask my oncologist about removing my ovaries instead of the tamoxofin. He told me that it wouldn't help since I was already post-menopause, but possibly that would be a consideration. Unfortunately, it still involves major surgery. Best wishes! - Jean

Anonymous · March 2009

seltzer----tamoxifen is the only one for premenopausal LCIS; post-menopausal LCIS can be treated with either tamoxifen or evista. The AIs (arimidex, aromasin, femara) have not been approved for use with LCIS since they haven't been studied long enough yet.

I just finished my 5 years of tamox and am now taking evista for further prevention.

Anne

seltzer · April 2009

Just an update and a last call for advice. The oncologist said the sore nodes are not significant but also supported my decision to do a PBM. She said they just can't see LCIS on MRIs and that was enough for me.

Now I just have to decide on the sentinel node biopsy. Both sides, one side or neither. The surgeon thought that the lymph nodes that would be in the breast tissue might be enough. Although she seems to prefer doing it on the left side, where the problematic lymph nodes are. I would love to roll the dice on there not being anything worse when they do the biopsies from the PBM. Just for the sake of having my arms in the best shape possible. I think I am going to wait on the reconstruction, too. Just want to take care of first things first.

The oncologist said tamoxifen was out of the question for me. I am premenopausal and had uterine polyps already.

Anything I should remember to ask at my appt with the surgeon next week? I feel so grateful to everyone on this board who has helped me reach a decision I know in my heart is the right one for me.

Mykidsmom · April 2009

Seltzer - I also could not take tamoxofin and one of the reasons is that I have had two D&C and polypectomies for uterine polyps. So I can relate that way. I did not have SNB w/ my BM - my surgeon was not worried about node involvement w/ only LCIS and it turns out that's all I had, so it was the right decision for me. I had immediate reconstruction. My PS explained that it is a little easier that way and certainly helps from a psychological standpoint. Sorry I can't help you more. Best wishes. -Jean

seltzer · April 2009

Thanks very much, Jean. It always feels good to hear someone independently getting the same advice (LCIS plus uterine polyps means not a candidate for tamoxifen). I know the reconstruction will be harder later, but I have had severe allergy problems (hives, contact dermatitis) in the last year. The lumpectomy brought on loads of skin reactions again. So I just want to prioritize the easiest way with my skin. Seems strange that such a small thing (and relatively non-threatening thing) as hives is guiding me, but the itchiness can really drive me nuts. For some reason the hives are centered at the incision points from the 3 cesareans I had.

What would I ever do without this board? It is really a tremendous gift. I am so grateful.

Ellen

taraleec · April 2009

Hi Jean and seltzer, I've just been online and reading posts. And still having trouble on deciding about mastectomy/medication. I too have had uterine polyps, & a D & C & polypectomies, what bearing does tamoxifen have on that, just wondering? (I hadn't known/heard anything about that before) (I've also had a Leep for severe cervical dysplasia).

Thanks Tara

seltzer · April 2009

I understand that they just expect you to have lots more trouble in the future and need frequent D & C's if you are on tamoxifen.

Ellen

Mykidsmom · April 2009

Tara - One of the SE's w/ tamoxofin is uterine cancer, Uterine polyps are not cancer, but they may indicate a problem there. So my oncologist didn't want to risk it. Of course, one of the things you will do w/ tamoxofin is have frequent vaginal US's - so it is not that likely that the uterine problems will get out of control. Best wishes my dear! - Jean

seltzer · April 2009

Yes, and I should clarify that I decided against it because of the hassle of more bleeding problems, which I was having, and not liking endometrial biopsies, vaginal ultrasounds, etc. But I have a tricky cervix with scar tissue, etc. I think it is not so much a big cancer risk with tamoxifen (and uterine cancer is not even hard to cure), but just the presence of bleeding problems.

I have a super high risk of stroke so that was a big influence on me, even though the oncologist thought the stroke risk is pretty minimal on tamoxifen. Send me a personal message if you want to compare notes on the decision. I have been researching, thinking, weighing things non stop for 3 months and am glad to share.

seltzer · April 2009

Just got all worried again after reading Dr. Susan Love's book (which always leaves me feeling kind of upset).

What are palpable lymph nodes? My onc said not to worry about them, but Love says if they are palpable you don't need a SNB they can just grab them. I have had palpable nodes since my 30s so I got scared all over again.

Having a PBM April 30, still contemplating the nodes.

Mykidsmom · April 2009

Seltzer - Sorry about the worry. I know that my PS and surgeon were not worried about SNB. And it turned out they were correct, the worst I had was LCIS which is not invasive. However, if they find anything invasive, then it is better if they do the SNB's. Have you had an MRI, it is possible that there is something more serious brewing?

LeroiRainard · April 2009

Lobular carcinoma is situ (LCIS). This condition describes abnormal cells found in the lobules or glands of the breast. LCIS increase the risk of developing invasive breast cancer (cancer that spreads into surroundings tissues). In some patients with LCIS, a bilateral probhylateric mastectomy (preventiveremoval of both breast) is recommended to reduce the risk of future breast cancer.

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leaf · April 2009

Yes, Leroi, that is true. However, in roughly 20% of cases when they find LCIS on a core biopsy (the number varies with each different study), when they do an excision, they find invasive or DCIS (which is treated differently than LCIS) cancer nearby.

http://www.ncbi.nlm.nih.gov/pubmed/17983063

But just about everything about LCIS is controversial, including the decision whether or not to do excision/SNB. The increased risk of breast cancer for women with LCIS is not ONLY where the LCIS occurs, but also in the areas of the breast where LCIS does NOT occur.

The American Cancer society opines that in SOME cases, it is not necessary to do excisions. This is a controversial position, as is everything in LCIS.

In this paper of prophylactic mastectomies (NOT necessarily LCIS and/or BRCA women), PM with or without SNLB saved about 1% of the women from having an axillary dissection. http://www.ncbi.nlm.nih.gov/pubmed/18257089 I'm sure this number will vary from study to study.

seltzer · April 2009

Had my bilateral mx thursday, and although I didn't have a SNB she said the painful lymph node was just sitting there sticking out, because of the inflammation and I guess the fat pads (?), so she took it. She is not worried, but it will be a relief from worry to get the biopsy results. Taking that one lymph node really raised the pain level, though.

Ellen

Mykidsmom · April 2009

Ellen - Gentle hugs going out to you. The first week is the worst, then it gets much better! Rest easy and take care. Did you get reconstruction as well? Take care. - Jean

LCIS and sore lymph nodes?

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