Difficult decision

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

Moderators: jenjay, Cassie, patoco, Birdwatcher, Senior Moderators

Difficult decision

Postby DancerDonna » Sat Aug 14, 2010 9:58 pm

I have a really difficult decision to make. I will have surgery for my second tumor in my left breast in early Sept. Both tumors have been HER2 +. I developed lymphedema in my left arm and hand after a breast infection, although I had only lost 3 nodes in a sentinel node biopsy. I will have a unilateral mastectomy with immediate DIEP reconstruction.

I am negative for BRCA, but am being tested next for BART, a rare mutation. If that is positive, I’ll instead have bilateral mastectomy with DIEP. The doc will attempt sentinel node biopsy and we will hope and pray that either the dye or radioactive substance moves since my breast has been through surgery, chemo, radiation, infection, and lymphedema.
The difficulty is my decision in what to tell the doc to do if sentinel node biopsy fails. He could remove no nodes, all the level 1 nodes, or all the level 1 and 2—an axillary dissection. Three other surgeons I saw proposed removing two or three nodes and sending them to the lab for freezing and slide making, if sentinel node dissection failed. This doctor, in the same city as the DIEP doc, says that would be a shot in the dark and he doesn’t want to do that.

If I have a positive node that is not identified, I won’t get to take more chemo. Unless the tumor is larger than is thought from the biopsy.

About six weeks after my lymphedema diagnosis, I met a woman who had an arm like an elephant leg. I still have nightmares about that. So I am afraid of my lymphedema getting worse, and the more nodes are removed, the greater that risk. But I am also afraid of cancer, and would hate to miss out on getting more chemo and probably more herceptin if I have one or more positive nodes not found.

Right now, it seems like it might be the most difficult decision I’ve ever had to make. Anyone have any words of wisdom?

DancerDonna
DancerDonna
 
Posts: 5
Joined: Thu Jul 29, 2010 2:23 pm

Re: Difficult decision

Postby blubrdfrend » Sat Aug 14, 2010 10:15 pm

I am so sorry to hear that you are having so many problems. You must be an incredibly strong person to have gone this far. I have never had breast cancer and I can not even imagine the despair of hearing such news. Maybe the lady has not cared for her lymphedema. She may have never received instruction or treatment. Your life is more important to your family that the appearance of your arm.

Someone recently said to me " When life is more than you can stand. Kneel ". At the risk of offending you, my advice is to pray for guidance and also pray that you will know when you receive an answer. I am glad that you posted here. Let us know about your progress, we care about you.
Betty
User avatar
blubrdfrend
 
Posts: 105
Joined: Wed Jun 30, 2010 1:02 pm
Location: Northeast Texas

Re: Difficult decision

Postby patoco » Sun Aug 15, 2010 11:20 am

Hi Donna

Very very tough call here. I can understand how you must feel as I was faced with a similar decision regarding my lymphoma. In 2000, five years after my initial diagnosis, it was clearly evident that nodes under the arm and in the right inguinal area were enlarged.

With late stage LE in both legs, the worse thing they could do for triggering a massive change in the LE would be to just go in and yank out nodes. Also, lymphangiograms taken earlier showed that a large number of nodes in the inguinal area simply did not form anyway - so I am already missing a substantial amount of those. My arms didn't have LE then (it came full blast in 2006), but I knew they were at risk because of things that had been happening from time to time. Yanking nodes from the under arm would have immediately triggered LE.

The doctors were in agreement with me about taking out nodes. We finally agreed that we would try a small needle biopsy to see if enough tissue could be had to do a path report on. Fortunately, that did work and because it left the node itself in, did not effect my LE (BTW, came back positive).

Move ahead to 2010, now with total body LE and massive lung fluid problems, I don't know what in the world we would do if we had to consider any type of node biopsy now.

If it were me (please remember I'm not a medical professional - just a patient like you), I think I would go with what those other three docs suggested. Surely that would be enough to confirm one way or the other. That way, if it turns out negative, then less damage would have been done to the lymphatics.

BTW, you seem to be really well informed, kudos to you on that. I love to see someone so interested in their well being that they have taken the time for study and learned. :D That should also make it easier in the long run to make a decision. I was wondering too if any type of PET scan has been done or if they think in this situation, it wouldn't be of any value.

You'll certainly be in my thoughts and prayers - both for a negative cancer result and for much wisdom on what to do.

My very best to you :!: :!: :!: :!: :!: !!!!!!!!!!!!!!!!!!!!!!!

Pat
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Re: Difficult decision

Postby Cassie » Sun Aug 15, 2010 5:42 pm

Hi, Donna, and welcome!
I'm so sorry for all this stupid new worry! Don't you wish the decisions were clear-cut and obvious, instead of having to trade one sort of terror for another?!

I have bilateral arm, hand and chest lymphedema from breast cancer, so hear you on not wanting to do anything to make matters worse. But a couple of thoughts occur to me. First of all, that woman you saw is NOT a vision of your future. You are already both knowledgeable and motivated to care for your health and quality of life, so even with further surgery and more nodes removed, with a good therapist and daily self-care you're going to get any new swelling under control quickly and be able to keep it that way.

That said, there sure are steps you can take before surgery to give yourself the best chance of managing any new swelling that results from the surgery trauma. Make sure your swelling is as controlled as possible beforehand; work with your doctor to decide how antibiotics will be used to prevent another infection this time; work with your therapist to devise a follow-up plan for in the hospital and once you get home, and practice to make sure you're able to carry it out (night garments are easier to manage than wrapping after surgery, for instance, so maybe a custom or ready-made night garment would be a good investment if you don't already have one -- a Compresleeve or similar adjustable product is even better, since it can be adjusted as your swelling decreases). Don't count on medical personnel to know your lymphedema needs -- have all instructions about it written in your surgeons orders, and someone on hand with you to enforce them when you're too groggy to do so yourself. If you end up having bilateral surgery, remember that both arms are at risk -- IVs and blood draws in feet, bp on calf. Lymphedema alert bands for in-hospital use are available free at:
http://www.lymphedema.com and/or you can purchase a couple of G-sleeves (stockinette that covers the arm with lymphedema warnings) from http://www.g-sleeve.com

I have no idea what the medical realities are regarding survival rates in your case if you don't allow the Axillary Node Dissection -- I do know that's a subject that's very controversial at the moment. If node dissection will change your treatment plan depending on the results, I don't really see what choice you have. Certainly you don't want to "shoot in the dark" where cancer spread is concerned. On the other hand, if it won't change your treatment plan, what's the point of removing them? So two thoughts that might (or might not!) help with your decision making:
1. If your cancer spreads and you DIDN'T do the node dissection, are you going to knock yourself crazy with regret?
2. Lymphedema is a bummer to live with, but it actually is do-able -- even bilateral lymphedema. There's much that con be done to control it and new products being developed to make it easier all the time -- plus new current research that offers hope of better management or even a cure.

Prayers for a very successful SNB so all of this is a moot issue! PLEASE do keep us posted!
Gentle hugs,
Cassie
Cassie
Senior Moderator
 
Posts: 44
Joined: Sat May 10, 2008 3:17 pm
Location: AZ

Re: Difficult decision

Postby DancerDonna » Mon Aug 16, 2010 1:20 am

Thanks Cassie, Pat, and Betty. Your words of wisdom do help. Yes, I do wish the decision was clear-cut and obvious, like I knew as soon I heard the new diagnosis that I had to have a mastectomy this time.

I have a Reid sleeve. It sounds like I better take it to the hospital with me since I am expected to be there about 5 days, maybe even 7. It has the adjustable straps on it.

Antibiotics also sound like a very good idea. I have to take them before anything surgical, including teeth cleaning, because I now have an artificial knee. But an antibiotic to keep infection away from the arm could be very important.

Thanks for the ideas and for sharing about your similar experiences.

Donna
DancerDonna
 
Posts: 5
Joined: Thu Jul 29, 2010 2:23 pm

Re: Difficult decision

Postby DancerDonna » Tue Aug 17, 2010 8:53 pm

I saw my oncologist yesterday and he strongly recommends against any more lymph nodes removed unless there is successful sentinel node biopsy or if it fails, if there are any nodes that are different from the others as seen or felt: bigger, harder, dimpled, or different-looking.

It was disconcerting, thought, that my oncologist didn't remember that my second cancer is HER2 + just like my first, and also is struggling with his netbook trying to access documents. Twice, he said "IF this tumor is HER2neu +," and I kept saying, "But we KNOW that it is." There was enough from the biopsy for the lab to determine that.

Now I'm trying to find research on the best injection sites for both blue dye and radioactive substance for best identifying the sentinel node in repeat SNB. I'm not finding much, so far. So I had an idea a few minutes ago. Since Dr. Guliano developed the technique for breast cancer, maybe I can find how they're doing the injections at St. Johns in Santa Monica.

I didn't ask all the docs we saw; our questions have kept evolving as we've seen different doctors. The last doctor we saw, a surgical oncologist I was referred to by the plastic surgeon after becoming so frustrated with the breast surgeon he works with most often for DIEP, told us that he injects the radioactive substance into the nipple the afternoon before and then the blue dye into the tumor site.

I found out that the breast surgeon who operated on me five years ago always injects both into the nipple. I think the sentinel node was probably easy to find on me five years ago, before surgery, chemo, radiation, a severe breast infection, and lymphedema. The surgical oncologist said he did that hoping that one of them will show the sentinel node.

I found out today that my surgery date was changed from the date I was told when I saw the plastic surgeon. I was told by the PS's office that they were blocking out Sept. 8 because he was booked thru the first week of Sept. Then Monday is Labor Day, Tuesday his one office day, so Wed. the 8th the next day. I was disappointed I couldn't have surgery right after today because I had my third and last spinal steroid injection today. He is popular since he does SIEA, DIEP, GAP, and TUG and he seems to be one of the few docs who does in the southeast.

I saw the breast surgeon four days later than the PS and spoke of the date, tentative only because of waiting on insurance to consider the hospital in-network. I have brought up the date when I've talked to both offices by phone. Anyway, when I called today to alert the PS's office that BART testing was started on my blood yesterday (I was negative for BRCA) and asked the time of my Sept. 8 surgery, the nurse went into some office to check and then gave me a time for Sept. 10. I was shocked and asked if they ever planned to tell me they'd changed the date.

I found out it's because the breast surgeon does something different on Wed., checking on patients, I was told. But it's not an office day for patients to have appointments; however, she also does paperwork on Wed. Apparently, the PS's office still didn't know that or else thought she sometimes operated on Wed. But they changed the date and forgot to tell me.

The surgical oncologist, who was available on Sept. 8, stayed late and talked with us past 6:30 last Thursday. So did three women who work for him. I could tell his nurse was more than a little peeved when I called them as soon as I found out about the changed date. Turns out he is already booked for Sept. 10. So I guess my surgery will be with the breast surgeon.

I talked to her nurse who stays in the office and of course, no one else has ever asked about injection sites. She was answering, "the breast." She tried to find out from a nurse who was supposed to ask a radiologist. The answer she got was a site half-way between the tumor site and where my first nodes were removed from, the armpit. That surprised me, not a site I've read about. I don't know if that's really where she injects though.

The breast surgeon did try to call me, I found out when I'd logged onto my school system's email. I had specified to her nurse that I was at home, so of course, she called me at school. Which never works very well because I'm usually not in my office when I am at school.

So my next mission is to try to find out the best location or locations for injection of both dye and radioactive substance (highest success rates for repeat sentinel node biopsy) and try to get the surgeon to agree. Although it makes me a little nervous if I am her first for injection into the tumor site.

If you are aware of any relevant research or have any ideas, please post them.

Thanks.

Donna
DancerDonna
 
Posts: 5
Joined: Thu Jul 29, 2010 2:23 pm


Return to Lymphedema Personal stories

Who is online

Users browsing this forum: Bing [Bot] and 6 guests