What would you do?

Chelee · 09-16-2007, 07:07 PM

Since my orignal DX back on 12-05 which was the *right* side only. I have mentioned to my surgeon and onc about pain in the *left* side axilla. My surgeon says he feels nothing. Its now been 1 yr & 8 months and I STILL have pain in my left axilla. (I've pushed & had ultrasounds & a MRI that shows there ARE two benign appearing 2 cm nodes in that axilla. The MRI I had *months* back said I *also* have *masses* in my *left* breast that were consistent with lymph nodes also. (I've since had a prophylactic mastectomy on the left side.)

I wanted my surgeon to do a biospy on at least *one* of these nodes to make sure they aren't malignant. He just puts me off. (I suppose because tests say "benign appearing") I recently pushed my surgeon to let me have another ultrasound of LEFT axilla. The report still shows the 2 cm nodes. It was given a BIRADS 3 rating. (When I had the prophylactic mastectomy that breast was found FULL of hyperplasia.) My surgeon stressed the amount of hyperplasia found. Plus that breast was enlarged prior to my mastectomy with a thickening in the breast tissue. I can't help but wonder if they missed bc on that side? Why do I have all these enlarged lymph nodes in my chest & axilla?
I flat out asked his nurse if they could tell me 100% its NOT cancer...she said of course they can't. Seems with my bc history it would be worth checking out.

So after hearing all that...how *long* should lymph nodes persist WITH pain & discomfort *before* a biospy is done, or the node removed altogether? Any opinions, advice would be appreciated.

Chelee

Joanne S · 09-16-2007, 07:37 PM

C,

Pain is not a good thing---I'm going through it now too. I think you have been extremely patient in enduring pain for over a year and a half and in asking your doctor for biopsy and/or removal several times. You should not have to get down on your hands and knees to convince your current dr.

You are overdue--- so it is time to see another doctor/s about this. You are #1 and you have to treat yourself as #1. You are not obligated to your current doctor (and I'm not saying not to see him anymore). You are in pain, you need to do the best you can for yourself by finding someone else that help to eliminate this pain. Even if it is benign---something should be done. People get benign cysts and tumors removed routinely all the time. You will find some someone who may do some additional diagnostic testing, treatment, excision and/or biopsy or whatever is necessary to resolve this problem. My best well wishes to you.

lexigirl · 09-16-2007, 09:23 PM

I have pain in my lymph nodes under my left arm, too. It is painful when I press on them. Of course I am constantly pressing around looking to feel any lumps. I am sure that doesn't help much. I also have some painful areas above my left breast. I am wondering if these are where the mammary lymph nodes are. I go to my next appt next month and am planning to ask about this.

I am hopeful that you are just fine and the area are benign.

Hugs,
Lexi

Chelee · 09-18-2007, 04:38 PM

Joanne & Lexi, thanks for your replies. I just got off the phone after talking to my surgeon's right hand nurse. I expressed all these concerns...and WHEN we should biospy, or at least find out exactly what's caused these masses in chest and axilla...stressing to her my pain. And the fact I have put up with this over a year and half. She gave me so many excuses. The main one is since they are benign appearing its better to just *follow* them with scans and wait and see if there are changes. (I don't like the wait and seen plan...never have.) I'm in a HMO group and there is only ONE other surgeon I can see for this..and he is in the SAME breast center. I guess I'll have to see if I can get a 2nd opinion authorized at another center.

The nurse said my surgeon doesn't want to disturb the lymph nodes and cause me other problems by doing so when these masses are benign appearing. (I understand that...but it HURTS!) Pain tells the body something is wrong. I'm frustrated. In the back of my mind is always the concern that its cancer.

Becky...if your around...can you weigh in on this issue? I would appreciate it. Thoughts, opinions.

Chelee

BonnieR · 09-18-2007, 06:00 PM

Chelee, I wonder if you might consider going outside your HMO and seeing an independent oncologist for a second opinion. And paying for it out of pocket. I know you should not have to do things that way but it sounds like you don't have alot of options within the system. I sought a second opinion outside the cancer center where I was diagnosed. Because it seemed all the specialists were associated with the same place and I wanted an independent opinion. I was clear that I was not signing up to be a "new patient" but paying the doctor for a review and his opinion... a one time visit....In fact, I went to two different places.

Becky · 09-18-2007, 07:24 PM

I know we always hear that cancer isn't painful and in a great respect, that is true. In breast lumps, in 10% of the cases, cancer does hurt. But for the most part, in lymph nodes, malignancy does not cause pain.

What does cause pain and/or swelling MOST of the time is infection. Infection, in your case, could have happened during the first masectomy (even though it was on the other side) or perhaps port placement or during anytime the port was accessed. To make matters even worse, the pain and/or swelling is rubbed. You rub to see if you feel something there. You rub to see if it hurts more or less than yesterday. This irritates it even more and may block the normal draining that needs to happen. I am wondering if you shouldn't be put on Keflex or other really good antibiotic for 2 weeks and DON"T touch the area at all for at least 4 weeks and see what happens. If it hasn't improved in the least or you actually see a swelling (which I don't think will happen), then all bets are off. I think you may have a low grade, persistent infection in there and it will never get better without a good one-two punch (good antibiotic and no touching or rubbing).

If that doesn't at least improve it, then you have to push, push, push. But I think if you go to your surgeon with this antibiotic/touching scenario, they just might go for it. And if you follow the protocol and it improves, great. But if it doesn't, then at least it gives the doctor pause for further study.

What do you think?

Chelee · 09-18-2007, 11:28 PM

Becky, I have had this pain in the left axilla since 12-05...but I must admit it is much worse now. (Alot worse!) I'm sure having the port in my arm on that side might of aggravated the situation. As far as antibiotics, I have been given almost every antibiotic there is since DX. The first month of my chemo I landed in the hospital and they didn't know for sure what was wrong with me so I was put on a *wide specturm* of antibiotics, which I continued on when released from the hospital. Axilla still hurt. Since that time I have also taken Cipro twice and had z-paks and no relief. (But thanks for the thoughts on that.)

You are right about *feeling* it and poking at it.

I *use* to do that. But I've been behaving myself for a long time now & quit doing that. I quit feeling it because I *can't* feel these nodes that show on scans. However my surgeons nurse called me today and we discussed this issue *again* & now its decided I will see a throacic surgeon and see what he thinks? I'll do whatever to get to the bottom of this. Before it was a slight discomfort that got my attention from time to time...now it actually hurts. Something has to be done. So now I can add another doctor to the other 7 I've seen. Ugh. Thanks Becky...much appreciated.

Chelee

Joanne S · 09-19-2007, 08:14 AM

Chelee, Oh I'm glad to hear you are being as persistent (with you health care provider) as persistent your pain. What pain medications do you currently take? I hope this new doctor can be of help. How soon will you be seeing this doctor? Please keep us posted.

May I ask your age, and what made you decide to get a ooph? I imagine the ovaries were analyzed for possible cancer. I am currently contemplating getting my ovaries out. Did you have side effects from the absence of the ovaries?

I was surprised when I read your port was implanted in your arm. My port is in my chest on the non-cancer side. I just assumed everyone had their medi-port in their chest.

Best wishes for pain relief.

kcherub · 09-19-2007, 12:13 PM

Throughout my entire chemo protocol, I have had soreness under both arms and in the upper right portion of my left breast (BC was in the right breast). The oncologist and the PA both said it was nerves acting up because of the chemo. It seems to be getting worse, and it is FREAKING me out! Should I press for something more?!?

I don't feel any lumps or swollen areas, but it surely uncomfortable and the mental aspect is just draining. What do you guys think? Should I just take their word on it being a side effect of chemo?

Chelee · 09-21-2007, 01:02 AM

Joanne, I take Norco & Ibprofin for pain. I take these for my *back & hip* pain. Even with those, my axilla still hurts. As to seeing a thoracic surgeon...I called my primary doc & he is putting in an authorization for one. So I should hear back from then next wk & can set-up an appt soon.

As to my age, I just turned 50 in June. My decision for an ooph was easy since my onc kept playing games with me & would *not* give me my zoladex on time! Every month when my zoladex shot was due, she would make me wait & do labs to see if my estradial was in post-meno range when I KNEW it wasn't. I was very peri-meno & she knew it. My estradial would climb each month fast while she made me wait for lab results. She did this every single time. So I never got my Zoladex on time. Even my 2nd opinion onc asked WHY she kept doing this to me. So with that nonsense..& the fact I had a cyst on my ovary that needed removed, I told the GYN lets just take them both and be done with it. Especially since I wanted to take an "AI". Both ovaries were sent to path and no malignancies were found. As far as side affects from the ooph...I didn't have any. No hot flashes, dryness, nothing which made me wonder? So long story shorter I hope. Found out I had some ovarian tissue left behind that can actually cause enough estrogen to be produced just like I never had my ovaries removed. (Unbelieveable!) So for me...my ooph was all for nothing other then removing the one cyst. They have ran 4 FSH tests on me since my ovaries were removed and I am still in the peri-meno range. So I JUST got back on Zoladex this last Monday. Which is what I did NOT want to do.

As to my port in my arm...they are placed in the chest much more then the arm. In fact I was *just* told a wk ago from the head nurse in the chemo area that they are NO longer going to place them in the arm. It left a big scar on my inner arm...looks awful...but its the least of my concerns. It worked like a charm.

Chelee