Recurrence after mastectomy. Did you have lymph node dissection?

klanders

I had a bilateral mastectomy with immediate DIEP reconstruction in 2013. I was HER2- so I didn't need chemo. Now, two years later I have two new cancerous tumors close to one of my scars. It is near the skin and towards the outer part of my left breast. (I've had PET scans, CT scans, MRI's and there is no metastasis.) I've seen two surgeons and they want to do two very different lumpectomy surgeries.

Surgeon 1 - She is planning to go in through my old incision and remove the two tumors and the part of my flap closest to the tumors so that she gets clean margins. She is also planning to do lymph node dissection. She says she won't take all the lymph nodes but just what's necessary. I will come home with a drain that I'll have for a couple weeks. Chemo will be decided based on lymph node biopsies. Recovery will require PT for lymphedema avoidance.

Surgeon 2 - She is planning to make a new incision, remove the two tumors and the skin just above them. She doesn't think she'll need to cut into my flap. And she says definitely no need to remove lymph nodes and no chemo necessary. She says I'll be up and about the next day.

Of course, both ways I will be having radiation.

One nurse I spoke to mentioned that the flow to the lymph nodes is cut off after a mastectomy so I wouldn't think the cancer could even spread there. Can any of you comment if you've had a similar experience? Thanks!

toomuch

Klanders - I don't have any personal feedback but I wanted to let you know that I'm sorry that you're faced with 2 divergent recommendations. I read your post where you said that going back to NOLA is not an option for you but I was wondering if you have spoken with the BS that did you're mastectomies there. Maybe another opinion from them would be helpful.

It's true that some of the lymphatic channels are interrupted after mastectomy but we obviously form collaterals or some are left intact. If we didn't have any lymphatic drainage in our flaps, we would all develop significant breast lymphedema. Did you have a lymph node dissection with your mastectomies? This may also be important in terms of any further lymph node dissection. There is a recent study that indicated that if you are going to have axillary and supraclavicular radiation, a lymph node dissection may not be indicated. Have you met with a radiation oncologist yet? If you know what your radiation plan is, it may help you decide on your surgical plan.

 

KBeee

I am in the same boat. I was diagnosed with a recurrence about 3 weeks ago, afer BMX (node negative, chemo, tamoxifen). I have had surgical consults here in Iowa and up at Mayo. My surgeon here was not going to do anything with nodes. Up at Mayo, she said that even though SND is not always accurate, if they use both blue dye and radioactive injection, it is about 75% accurate. Her research focus is in that area. She also used ultrasound and PET scan to look at nodes. She said the lymph can form new pathways, and 10% of the time, the sentinel nodes will be on the opposite side! For family reasons, I am having the surgery close to home, but they are doing sentinel node biopsy since that is what was recommended at Mayo. If there are any positive nodes, then they will do ALND. I am hoping to avoid that. Radiation will be next. I am having oophorectomy then switching to an AI. If any nodes are positive, or if there is cancer in the pec muscle (tumor was between pec muscle and skin) remaining or the skin, then chemo may be required. Also, we will do oncotype after the surgery, at my request.

Sorry you are facing this, but I am swimming in the same sea of confusion and uncertainty as you. Feel free to PM me anytime.

farmerlucy

I had a sentinel node biopsy post mx too. I've only seen one small study about it and it said it is around 65% effective. My BS felt confident he could do, and apparently did.

klanders

Thanks for your responses! I'm sorry you've had to go through this, too. I was supposed to have surgery today and I canceled it. I just didn't have a peace about either surgeons' recommendations. I've sent all my images/info to NOLA but they haven't responded yet. Last time, before I ended up at NOLA, I consulted with Dr. Funda Meric-Bernstam at MD Anderson. I shot her an email over the weekend and she actually called me on Sunday to talk about my situation. I hadn't wanted to travel this time but I'm going to do it. She has had experience with recurrence after BMX and she seems to think sentinel node mapping can most likely be done. I feel good about this approach. The downside is that it will probably be three weeks before my surgery. The upside is that pushes radiation back so I'll probably still get to go on spring break with my family. There's a chance that something might be going on in the right breast, too, so we need to get to the bottom of that before surgery. (I had cancer in both breasts last time, also.)

Hugs to you all!

Kristin

angelia50

klanders, I didn't see any medication listed. Did you take any kind of hormone therapy?

klanders

Angelia.. I was stupid. I tried tamoxifen and the side effects were really bad so I quit after two weeks. I saw a naturopathic doc who had me take several supplements that were supposed to work just as well as tamoxifen. It may or may not have made a difference. There are other women on the board who have had almost the same experience as me but who took the tamoxifen and still had the cancer come back. You just never know. I will definitely be taking it this next time around

KBeee

I had surgery yesterday. They did blue dye injection and radioactive tracer, but could not find a node. BS felt around all the nodes and one was hard, so he took it out. It tested positive, so he took a whole bunch more, which are being sent to pathology.

PinkHeart

Klanders,

I am very sorry to hear about your recurrence. Have you considered having recon surgery in Houston? ... There is a very experienced microsurgeon there you may like to research who trained by Dr Allen and worked with Drs. Massey, Kline, Craigie, etc on flap studies. Her name is Dr. Aldona Spiegel. http://breastrestoration.org
I believe she is insurance friendly. I have emailed with a patient of hers that had major complications and Dr. S has really been there for her through it all.
... If you will be going back to MDAnderson for follow ups you could combine appts with recon travel to save expenses. There is a new Hope Lodge there under construction, but ACS can help get you a nice hotel for $15 a night. Call 800-227-2345. ....

.... Do you mind saying what supplements were suggested in place of tamoxifen? ...

Thoughts and prayers are with you through all this.

Curlylocks

Klanders,

I remember you from the DIEP Flap thread (I had mine in Dec 2013). I am very sorry that you are facing this crap again!!!
I had a reoccurance (found via my pathlogy from my "supposedly prophylatic bilateral masectomy" with DIEP). It was a new Primary 8 years after my first bc, talk about being pissed and grateful at the same time that I did the surgery due to high risk family history (2 sisters with bc).

My first bc was er/pr+, 4cm tumour and had 23 lymph nodes removed from the left side...3 were positive. This time around although the cancer was found on the same side, they didnt go back in and remove any more lymph nodes as I had already had 2/3's of them taken in 2005. I had chemo a 2nd time as I was Triple Negative this time.

My opinion on removing the lymph nodes would be if they could successfully do a sentinal node dissection to check for any possible chance of positive nodes I would see if they could do that first. If not, have the lymph node dissection done as you dont want to risk missing something this time around.

Wishing you the best Klanders!

Michele

klanders

Sorry you had to go through this again, Michele! Pink Heart, thanks for all that great information. I had NO idea that the American Cancer Society could get discount rooms. Even paying for rooms right now in Houston is tough (either sold out or prices jacked way up) because of the month long rodeo. I called that ACS # that you listed and they were able to find me a room for 5 nights at $12 a night!! I'm ecstatic about that. They are still trying to find us a room for the last 3 nights but worse case scenario by then we can move further out into the suburbs. Regarding Tamox substitute... based on my blood work my doc told me that this was the "cocktail" that I needed: CDG EstroDIM is the main thing. She also wanted me to take 1 Molybdenum 500mg, 1 Lithium Orotate 5mg, and i-Throid 6.25mg. I added a bunch to that but most important of my other supplements, I felt, was bio-curcumin.

PinkHeart

Klanders,

So glad ACS could help you! I used their Roads to Recovery program (free rides) when I had to do daily (30 days) HBOT therapy for radiation damage issues. I could not drive because it was immediately after my Stage 1 SGAP surgery. The hospital was 45 mins away and I only had rides from fam and friends for half the sessions. So ACS provided two volunteer drivers to take me the other days. One driver turned out to be former doctor of mine who retired. He picked me up in his Bentley! He drives cancer patients to chemo, radiation, and other cancer related appointments.

SheltieLady

Klanders:

 Sorry you are having to go through all this again.  I have a similar situation in that I had a L mastectomy in 2012.  For some reason, the surgeon took out 10 lymph nodes at the time, but we can't figure out why (perhaps accidental) b/c they were all negative.  No treatment other than Tamoxifen was recommended, but  I declined to take Tamoxifen because of a family hx with strokes.   Anyway, I was diagnosed with a recurrence in Nov 2014.  The lump, which I thought was scar tissue, was along the side of my breast in line with the old incision.   My new surgeon performed PET scan, CT scan, etc. and found no mets.  He performed a lumpectomy using a new incision, not the old, and removed 2 lymph nodes, which were negative.  The tumor was ER/PR/HER +.  He sent my case for discussion at the hospital tumor board and they all recommended Herceptin and radiation, but because it was a recurrence, they felt strongly I should  have chemo to be as aggressive as possible.  I just finished my chemo and will move on to radiation next month.  I must say that, while I am happy to be aggressively pursuing this, I am ready for a return to a less cancer-centric life.  I'm sure, after what you've been through, that you must feel the same.   I wish the best for you.

klanders

Oh, Sheltie.. thanks for your comments. My head is reeling because an hour ago MD Anderson called to cancel my surgery. They are recommending chemo first. I have two other doc opinions - the first said absolutely no chemo and no lymph node removal. 2nd doc said lymph node dissection and then determine if I need chemo. Now MD Anderson says chemo first. I'm SO afraid of chemo because it almost killed a friend of mine. And my husband (of 26 years), who is wonderful in most ways, is fearful of what chemo will do to me and also how it will affect our family. I don't think he'll do very well watching me suffer through chemo. I've asked God for a postcard from Heaven... maybe your comment about your experience and having chemo is that postcard. I don't know. It's just SO HARD having so many different choices!!!

Are you going to do tamoxifen this time around? I've already decided that no matter how it makes me feel, this time I'm doing it.

Momine

Klanders, there are risks with chemo, but most people make it through just fine. I had chemo from hell, 8 cycles, 4 before surgery and 4 after, a total of 4 different drugs, some of them very nasty. It was not easy, but I did not suffer. I walked my dogs every morning all the way through. My husband and I went to Paris between chemos 6 and 7 and I walked 5-10 miles each of the days we were there.

I imagine the MDA people are concerned about how this bugger keeps coming back like a Jack-in-the-box. Ask them why they are recommending chemo and why they want to do neo-adjuvant. One big advantage with neo-adjuvant is that you can see/feel more or less immediately if it is working.

Your friend who had this problem, did she have other health problems? What happened?

Oh, and if this really is the best approach, your family will have to deal. This is about YOU and keeping YOU healthy.

PinkHeart

Klanders, oh my! More Prayers and hugs for you. My head would be spinning, too, with trying to find peace with such a major decision. If you lived close I would be so happy to help. We all are so different in how we are dealt varying levels of emotional and physical pain with cancer. Some work right through it with no problems other than being tired but others simply cannot and are really ill. I helped out a close friend last year who went through chemo and she was on leave of absence through it all. When her husband went on business trips I went and stayed with her 3-4 days and walked her dog for her in sub zero weather. One day she would be okay to just move about the house and watch movies together and next day she would be bedridden. Then she would feel better for 10 days and go out and do as much as she could before the next treatment that were 3 weeks apart. Repeat. Four months after all done she took a two week trip and did great. ... I still wonder sometimes if I should have done chemo since it did go to two lymph nodes, but Mayo oncs said no because I have a heart condition and my OncoType score was low.

enjoyevrymoment

Flanders, will def be praying for you about all the decisions. No matter what you decide I think it will be like the decisions we all made, after you slow down and take a deep breath the best choice will seem the most peaceful for you and will feel right. I was sure i was going to go one place but ended up at another and was glad I did.

Good for you for knowing your body, finding the lumps, and it is great news that no mets are evident. While those of us who had reconstruction feel blessed that reconstruction can be done, you are right, we still need to do all we can to pay attention to our bodies. In my case it reminds me how I really need to get more serious about my diet as well. Bottom line is there are so many variables with our cases and gene pools, we all just do the best we can and squeeze our time into something meaningful and joyous with full appreciation of each day. I am not going to lie though I am still a little pissed for you....but I suspect you are a scrappy one and will kick it's behind!

Hang in there. Hoping this is soon very far behind you and your decisions that are coming up will become clear.

Cindy

KBeee

klanders, when do you start chemo? I start either March 31 or April 1

klanders

Karen, I don't know yet. :-( Because things got so much more complicated with throwing chemo in the mix I am now considering two options and I need to decide this week.

MD Anderson - chemo first (12 weeks Taxol) and then the AC - just like you but reversed order. Then surgery.

OR University of Michigan wants to do surgery first so that we can see what exactly is going on with the two tumors. They want to remove all the tissue in between the tumors so would take out a golf ball size area (out of my DIEP reconstruction) and I'll have to have plastics again at some point or just learn to deal with it. THEN, they would do chemo but best case scenario is they look at the tumors and there is nothing major going on around the tumors so they would only do 4 treatments (every three weeks) of Taxotere/Cytoxan.

Both would finish with 6 weeks of radiation. Tough choices. Either way I should be doing surgery or starting chemo about the same time as you - hopefully. It's time to get this show on the road and get it over with.

YoungTurkNYC

Klanders,

Please do not fear chemo. It may not be a walk in the park but it will most likely not be as bad as you imagine it. I was actually afraid they would not give me chemo, because i carry a baggage due to my mom's experience. (She was not given the chemo with her stage 1 diagnosis and then advanced to stage 4 and always regretted not having done chemo). I did not care about hair loss and all other side effects were not as bad as i imagined them to be. Best of luck with your decision.

klanders

I'm fearful because of the potential heart issues that can develop with the Adriamycin aka "red devil." The other side effects I think I can deal with, but I have high blood pressure at a young age (started around age 42) and I didn't have any of the risk factors associated with high blood pressure. My mother died recently at age 75 - was in perfectly great health other than high blood pressure - and she died of heart failure after spraying some dust in her face while leaf blowing and having an allergic reaction.

On the other hand, there were mistakes made the first time around in my treatment. I can't afford to make mistakes this time around. I just wish that ER + had a higher response rate to chemo.

jbdayton

I did the MD Anderson protocol of chemo first. I did the 6 rounds of TAC (Taxotere, Adriamycin, Cytoxan) and I ended up with a near perfect complete response (tumor shrunk to 5 mm but was inactive and an inactive micromet might have been found in one sentinel node; only thing making it not complete was an area of 1cm of DCIS in the original tumor bed). I was 100% ER+. The good thing about chemo first is we were able to feel the tumor shrinking even after just the first treatment. I was given good pre treatment meds so I did not suffer any nausea. I did have severe mouth irritation but no sores and sore bones for about 3 days from the Neulasta injection to rebuild the white blood cells. I also spent about 2 to 3 days on the couch exhausted but then was able to get up and do lots of walking and have 2 good weeks before the next treatment.

Would I do it again? Yes. I also did 25 days of radiation because of the DCIS in the tumor bed. It was very close to the chest wall. I did worry about 2 possible assaults to my heart but several echoes still show a healthy heart at this point.

My hair has grown in very thick and close to the same color as before chemo.

Praying for you in making your decision. It is not easy but God will help you decide what is best for you.

Keep us updated on your decision.

KBeee

Tough choices. Last time I did TC because of potential heart issues with A. I have borderline high blood pressure and need a stong heart for my job. I also wanted to have A as an option should I have a recurrence. Sigh...I was not planning on tha being so soon. Hence I get AC+T this time. When do you have to decide? I know it is a tough decision. Either way, you CAN do this. We seem to have VERY similar situations

SchoolCounselor

kbeee hugs!!! Your picture is different so I was not sure it was you. BC sucks.

klanders

I finally have a plan and I'm at peace with it - so that's good! Chemo first has never been about shrinking the tumors before surgery - because my two tumors are so small (both under 1cm). Unfortunately they have to take out everything in between them to make sure there isn't cancer lurking there and they are about 3 cm apart from each other. I have decided to go to University of Michigan and do surgery first. I like the idea that they can study the tumors to see if they are just left over cells (since NOLA had trouble getting clean margins two years ago) or if it is something more aggressive. They will adjust their chemo plan to fit what they find. I am having surgery on Good Friday with Dr. Sabel... which is pretty ironic - because two years ago on Good Friday Dr. Sabel did my sentinel node biopsy! I would have had my mastectomy/implants with him but my surgery was postponed because of a scheduling problem so that gave me time to decide to go to NOLA instead for the BMX/DIEP.

Karen - we're similar but not. You did everything right the first time - chemo - Tamoxifen (which I quit). At least you have the knowledge that you've done everything humanly possible in your treatment. The good news for both of us is that it hasn't metastasized! Time to kick this stuff!!

mel147

Klanders - glad to hear you have a plan in place!! Please don't be hard on yourself about quitting the Tamoxifen. We all have such hard decisions to make and we all do our best based on the information we have at the time. I have seen so many signature lines of ladies who've had a recurrence even with having done chemo and Tamoxifen or Tamoxifen only and then others haven't done any of those and have not had a recurrence. There doesn't seem to be any one formula that we all should follow. My MO did not recommend Tamoxifen for me even though I am ER+ and PR+. I certainly hope he was right, but I realize only time will tell that. Take care and good luck with everything on Friday!!

klanders

Surgery went well on Friday. Sentinel node mapping worked (even though things were disrupted after my last node biopsy/mastectomy). I had 3 nodes removed and unfortunately there was cancer in 1 of the lymph nodes. They got clean margins on the breast tumors so that's good. Now I'm resting/healing and waiting to get an appointment with my oncologist and find out what chemo plan the tumor board is recommending.

KBeee... how'd chemo go?

mel147

klanders - glad surgery went well and they were able to get clean margins! Sorry to hear about the positive node. Take care and good luck with your oncologist appt!

kbeee - hope you are doing well after your chemo!

Hopeful82014

Klanders - I'm glad your surgery went well but very sorry to hear about the lymph node. It's tough that you have yet another wait to discuss your treatment options. I hope in the meantime you are resting lots and healing well. Please keep us updated. Gentle hugs to you.

Butterfly66

Sounds similar to my story Michel

I am new on this discussion board.

" I was dx in January 2008. (Stage 2b ,7/24 lymph nodes)( right breast dcis) er+. Her-2-. I had a bilateral mastectomy, now 8 years later I had a recurrence in the lymph nodes. Right side. 16/37 I too am now er-pr-

I started carbo/platin last Wednesday. How did you find the chemo the second time around?

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