Wife Just Diagnosed - Questions

beezy_b · January 2011

My wife was just diagnosed with a low grade invasive ductal carcinoma. We are early in the process and it is very willy nilly feeling with all the appointments and frankly that part is making us nutty.

What I am most curious about at this point is we have spoken with a surgeon and a radiologist and we are being scheduled for various proceedures but we are confused on this one topic.

The surgeons office said that during surgery they "always remove 3-4 lymph nodes" at the same time as the breast surgery - BUT the same time they are saying this they have her scheduled to go in again in a few days to ultrasound and biopsy the axilla node. I realize the auxilla is not necessarily the sentinal node and since my wifes auxilla is not "notably enlarged" I question why they are not just biopsying the sentinal and its downstream nodes instead of just removing them at surgery time?

I am not a Dr - But I think it is generally a safe assumption that whatever we have "inside" of our body was put there for a reason and lymph nodes clearly have a purpose. My wife is young (39)and besides this scare she is very healthy and fit - The idea of her potentially having to deal with Lymphedemia if she doesnt have to worries us.

Yes its the lesser of two evils but wouldn't a biopsy clarify if that little gem was evil or good ???

Thanks Folks - This is a great and scary forum for newly diagnosed people like us.

Letlet · January 2011

Beezy, at the time of my surgery I had a sentinel lymph node biopsy. I was injected with radioactive dye the day before and it helped my surgeon locate my LN at the time of surgery. He first biopsied the sentinel nodes and when they were positive, he took them out and then some. When the "some" still turned out positive (while I'm laying on the table) he still took out more. He took out 23 LN in all with 6 being positive. Hope this helps.

Shrek4 · January 2011

In this age the standard procedure is to do only the Sentinel Node biopsy. They inject a type of dye (that injections is awful it's done around the nipple, in the areola) so they can avoid removing unnecessary lymph nodes if there is no lymph node invasion.

Even so, the latest ASCO conference outlined that recent studies show that the excision of the axillary nodes has absolutely no effect in the recurrence/survival rate. It is only done to stage the cancer and to establish the treatment. Nowadays testing technology (PET/CT and MRI) can show if there is lymph node involvement. Removing the lymph nodes in the axilla increases the risk for lymphedema (sometimes removing just the Sentinel Node can cause it) , the more nodes removed, the higher the risk.

Try and push for SNB only. If it were me, I wouldn't accept anything else at the initial surgery. I fought teeth and claws to have only one level of axillary nodes after my SN was positive - and they were all negative.

bdavis · January 2011

From what I understand from your post, they are planning on doing the node biopsy PRIOR to the surgery. That may be to decide what type of surgery?? If the nodes are positive, maybe they would suggest mastectomy?? But even if they go in prior, I would assume most would take the sentinel node and look at it in pathology while she's on the table and decide to take more or not right then.

For me, I had my sentinel node biopsy during surgery and at the time it came back negative... but once full pathology came back they found I had a micromet (small .38mm cells)... so if they had know that going into my main surgery it may have impacted the next step... I had lumpectomy, but am now contemplating prophylactic BMX.

barbe1958 · January 2011

beezy, you make a good point. I only had an SNB and two nodes within my breast tissue removed and I have truncal LE. Yet another daily reminder of what I went through. If that node of hers is enlarged, it could be doing it's job and fighting the cancer and would have to come out anyway. I would be like Day and dig my heels in for them to not take more than SN though.

bdavis · January 2011

Oh... and the nodes job normally is to protect us... I have a friend who had nodes on both sides removed (double cancer 3 years apart) and she has to take special care to glove up when gardening, cleaning etc to protect herself from infection.

I am only down 2 nodes and have had no problems... and my sentinel had a micromet, and when I asked about taking more my bs said, no, not necessary... just a trace amount of cancer and it was removed... very unlikely there would be more downstream... and I am on chemo so hopefully if anything escaped, it will be DEAD by the end of chemo.

beezy_b · January 2011

Thanks for all the replies - It's all so confusing and more than us non-specialists can consume and make sense of -

I want all the bad stuff gone - But I thik stuff like Nodes are supposed to be there - I would guess if it has cancer cells in it it should go but at what point do they say chemo can handle it? and leave the node there? Does it have to be a couple of cells there to take it our or does it have to be notable growth in the node?

Thanks again for the information. Strrrreeeesssssseeeeeeddddddd.

barbe1958 · January 2011

Don't worry, you will be an expert in a couple of months and helping another newbie!

Shrek4 · January 2011

I forgot to mention that my ALND was done AFTER the chemotherapy. So definitely, if there was anything there, the chemo took care of it.

barbe1958 · January 2011

Duh, why did your docs do that, DAy?

heathermcd · January 2011

I had two lymph node biopsys prior to surgery in which they tested my sentinel nodes (I had two sentinel nodes positive and one axillary so the cancer skipped a sentinel to get there!) Anyway, the biopsys that were done both came back negative so we went in to the surgery assuming that my axillary modes would not be removed. Unfortunately, that didn't end up being the case. In my case, I'm glad they did both the pre-surgery needle biopsy and the extraction.

Shrek4 · January 2011

My BS did that because the whole board was pushing for radiation for me. He was against radiation, and wanted to do the ALND to prove to the board that I don't need radiation. I considered that I didn't need ALND because I knew already I didn't have anything there. So we bargained for only 1 level ALND.

D4Hope · January 2011

I had SNB total of eight nodes removed. I have had no problems with lymphedema.

newbie · January 2011

just an fyi: you might discuss with your dr. the possibility of nerve damage with removing lymph nodes. while it is very important to remove them if suspicious, there is a risk to nerves during this procedure. i have this nerve damage and it has been very painful and so far with all meds tried to this date, i have only had minimal relief after 6 wks of tx. still trying to find successful mix of meds, but haven't been able to return to work yet because of this. good luck with everything!

barbe1958 · January 2011

Newbie brings up a good point. I am over 2 years out and still have a numb armpit. I am very nervous shaving it! You can get LE 20 even years later. Or at any point you "piss off" the area; carrying heavy loads, other surgeries, impingement, and so much more.

Smile_On · January 2011

When doing a lumpectomy or mastectomy my surgeon always injects die to find the sentinel nodes, removes those 1-3 nodes and does a quick biopsy. If those nodes are found cancerous in the operating room she removes the rest of the nodes in that area. If they are not found cancerous she sends the nodes to the lab for a full evaluation. She said that there is a small chance that in the lab they will find something microscopic that she did not see and then the patient would have to come back in for more nodes removed.

In my case no one saw cancer in my lymph nodes on the pre-surgery MRI and they could not feel anything despite literally digging their fingers into my armpit. Nevertheless when they did the sentinel node biopsy I did have 1 lymph node with "substantial" not microscopic cancer (I don't know what exactly substantial means, but that is what I was told). Because of that 18 total lymph nodes were removed. It ended up that only that 1 had cancer, but they couldn't know that until they were removed and they checked.

To be completely honest I am having difficulty with being young (I'm 27) and having a pre-cancer very active and fit lifestyle and the side effects of node removal. I have a pretty obvious divet where the nodes are removed, nerve damage to my arm, and lymphedema. Even with all that said I wanted every bit of this cancer out of my body and I don't think I would have fought the node removal.

I know this is such a stressful time with way too much information thrown at you and way too many decisions to make in a short time. I will be thinking of you as your wife approaches surgery. When is her surgical date?

beezy_b · January 2011

Thanks again everyone for your input - We just got back wifes MRI so we will know more later today (radiologist promised to get back today anyway).

Back to the topic of the Nodes....Smile_On my wife is like you in that she says "just get it all out of me" and I agree if there is notable cancer growing in a lymph node then it seems obvious that it should be taken out - But if its not obvious (doesnt show up on the MRIs and isn't noticable otherwise) isn't that why you are subjected to Chemo anyway?

Our understanding with this group (St.Vincents) is that IF you have anything in your lymphatic system you WILL get chemo therapy...So based on that I still question why take the 'slash-and-burn' approach? Sort of goes back to the earlier question I was wondering about - and thats at what point with cancer cells in the lymphatic do they just let chemo do the cleanup rather than take them all out and forget the consequences theory?

When I see/hear people on here - esp someone like Smile_On who is more than 10 years younger than my wife and seems to have a very fit lifestyle of exercise and is suffering the consequences of having lymph nodes removed that were not even problematic I worry.

My wife loves to be active and we have 3 young kids - having to deal with ongoing pain after the misery that the rest of the treatment sounds ike it is going to be, makes me worry for her.

Smile_On - Did you go through Chemo?

Well hopefully we'll know more soon - like later today. My fingers and all my toes are all crossed that this hasnt gotten further than the lump.

Thanks All!

B

Anonymous · January 2011

Beezy B .. I was fortunate to only have/need 3 nodes removed and I totally understand your concerns. In fact.. I also have the same questions as you. If they would have to radiate the area anyway.. or do chemo.... wouldn't that take care of any (non obvious) lymph nodes that may or may not contain cancerous cells?? Is it really all just for staging? I think you have some great questions and legitimate concerns that you should bring up with her medical team. Thank you for being a strong advocate for her and doing the research before hand .... as I'm sure you've seen... things start happening pretty quickly once you board the BC train... and it's easy to get a little overwhelmed and just get swept away before you have a chance to think about what is happening to you! Big hugs to you and your wife and I'm hoping things go as smooth as possible for the you both.

~ Susan

Twinmom77 · January 2011

So sorry your wife and you have the stress of dealing with this. Sounds like you guys are still at a point in the beginning where everything is confusing and the waiting is horrible. Things will start to make more sense as soon as some of the results from all the testing comes back.

Doing an axillary biopsy before hand is just another way for them to get more information in order to come up with the best treatment plan. They don't usually take them out at this point, they just stick a needle in and biopsy the matter in the needle. In my case, they did an axillary biopsy in order to help determine the order of surgery/chemo. Because of my age (33 at dx) and high grade, we already knew I was getting chemo for sure. The questions was, surgery first or chemo first? If the lymph nodes were positive, I'd have surgery first. If negative, I'd have chemo first in order to try and shrink the tumor and make a lumpectomy a possibility. Mine ended up being negative so it was chemo first for me and then a lumpectomy with an SNB. They took only two nodes and although I agree with you re "if it ain't broke", I'm glad they took them. It's just makes me feel better knowing for sure that there was nothing in the nodes. I'm still very active. I go to the gym 3-4x a week and lift weights 2x a week. And I have 40lb twin boys that still like to be picked up (that's why I started lifting weights!). And I do lots of yoga. So it is possible to still have a normal life once all the treatment is through.

Hoping for good results from the MRI for you guys!

Smile_On · January 2011

Beezy_B

Because of my age & Her2 pos. cancer my breast team recommended chemo regardless of whether they found positive nodes. I had 3 FEC and 3 Taxotere's each 3 weeks apart. I had Herceptin with my last 2 Taxotere's and continue to get that every 3 wks. for a year. Because of the positive lymph node I also had radiation to my breast and my underarm area.

I am still trying to wrap my brain around all of the stats and medical info, but my understanding is that each treatment adds to your overall prevention of reoccurence. When deciding whether to do radiation my rad. onc said that he couldn't tell me 100% that I needed radiation. I was either in the group that had some microscopic cancer cells still lingering after mastectomy/node dissection/chemo or I was in the group that all of those treatments did their job and didn't need radiation, but that there was no way to know that at this time. Even in getting radiation I could be in the group that with everything thrown at it the cancer decides to stick around, but at least I feel like I threw everything possible at it that was available to me.

I found a couple websites that might be helpful for you, but the best source is to ask your doctor/clinical team. I know they seem busy but they give you the answers that are specific to your wife.

http://www.breastcancer.org/symptoms/diagnosis/lymph_nodes.jsp

http://www.cancernews.com/data/Article/202.asp

Let me just thank you for being so supportive and concerned for your wife. My fiance has also been wonderful and I know it hurts him to not be able to "fix" me. The same goes for my dad. I think the men in my life are "fixers" and when I have had problems in the past--a stuck break, a leaky faucet, a computer issue--they could fix it and it makes it hard for them that they don't think they can do anything for me. I don't know your wife, but the best thing they did/are doing for me is to be there when I need to talk or cry, to distract me with something fun when I don't want to focus on cancer, to take on the load of keeping family updated because I was not able to repeat the same news over and over (I had a 3 person limit and then would get emotional), and to help be my ears at appts. as my brain could only hold so much.

TonLee · January 2011

I only allowed my surgeon to take 4 sentinels.

I refused Axilla dissection based on the this trial/study that came out in Septemeber.

ACOSOG Z0011: A randomized trial of axillary node dissection in women with clinical T1-2 N0 M0 breast cancer who have a positive sentinel node.

If there is cancer in the sentinels your wife will get radiation to that area anyway, so I don't see what the point of removing the axilla is. It doesn't add a day to survival or chance of recurrence...all it does it give a 50% risk of Lymphdema (10 years out). No thanks.

Radiation has a lifetime risk of 5% for Lymphdema...or there abouts.

I suggest reading this study, then taking it in to the surgeon. My surgeon fought me until I brought the study in...and he said, "You're right. If there is cancer in your sentinels, you'll get radiation anyway...no need to remove anymore..."

He also believes in 3 years axilla dissection will be a thing of the past since the consensus agreement in Sept is starting to suggest it is not worth the risk of Lymphdema.

Hope that helps!

lago · January 2011

beezy b there have been heated discussions regarding to remove or not to remove lymph nodes. Listen to both sides then discuss this with the oncologist. I had 10 nodes (level 1) on the large tumor side and a sentinel node dissection (4 nodes) on the breast with 4 suspicious areas. My nodes were all clear but I do understand in my case why this was appropriate. I do have some mild lymphedema in the arm with 10 nodes. I have no regrets and I do trust my BS.

You wife's case is different from mine though. Yes I would be in the same camp as your wife. Get the cancer out of me. Again do discuss this with your BS. Chances are she will have chemo if her nodes are infected. That too can cause lymphedema. If she decides to have a mastectomy that in itself can cause lymphedema. It is a life time risk but if caught early it can be managed. It's not great but I rather have lymphedema then cancer… just my $.02

Sandy1941 · January 2011

breezy_b: I haven't been on this board for a while, but let me share my situation with you. Dx was bilateral IDC in 2004 (L=2.3cm) (R=1.5cm). Surgeon #1 said double Mx stat (path showed grade 1), Surgeor #2 agreed and I went for 3rd opinion....My burning questions was "WHY NOT lumpectomies and brachytherapy?" Drs 1&2 didn't know anything about brachytherapy and both cautioned I'd have to do rads 5 days a week for 5 weeks, each side. Dr. #3 said lumpectomies a real option, so I went with Dr. #3 and had lumpectomies. They removed SN on (R) and SN+2 on the (L) since it was larger. Nothing further on the (R) but did have brachytherapy on the (L). FAST FORWARD to 2008 - 4 years later. MRI (annual) detected 2mm (bb size) lesion on the (L) - again - @the bra line. Another lumpectomy and mammosite to the area (previous rads was to upper 11 o'clock area). 2 1/2 years later I'm fine. I have NO regrets about my decisions.....I don't want them to use a cannon in this war when a pea shooter will suffice. The battles have been won but the war continues every 6 months with followup mammos and annual MRIs. And, after this 2nd round of rads to the (L) I am in therapy for LE ....to the breast and truncal areas.

MY MESSAGE TO YOU AND YOUR WIFE: #1 take you time and get a second opinion, always. #2: if it doesn't sound right to you, ask questions again and again. Remember, when it's all over, the Drs return to their normal routines.........the patients do not. As my husband told me "no one can make you do anything you don't want to do - it's your life". #3: You wife must listen to her body - she knows it best. I totally agree with 'why not just SN' removal and again urge you to go for a 2nd (or even 3rd) opinion. You don't get 'over's" with this game so choose your options carefully! Just be sure you're researched ALL your options.

This site saved my life and helped me continue living life my way for the past 6 1/2 years - can't ask for more than that! My prayers are with you!

Sandy1941 · January 2011

breezy_b: did you get the part I posted about being in LE therapy - AFTER the 2nd surgery, they removed 10 axillary nodes. First surgeries were only the SN and no problems & clear. 2nd surgery & 10 additional nodes....still clear, but has consequences. They test the SN during surgery and with lumpectomies rads is a given. Chemo is recommended if the nodes are positive.

I know your panic mode....I felt like "Pacman" was inside my chest, but I was more concerned about drastic double Mx unless I had no other choice. And, it turns out I had a choice, Thank God. No chemo. Fight the fight - you're the one that lives with the aftermath.

bdavis · January 2011

I think that based on my situation (microscopic cancer in one node), the decision my surgeon made to NOT remove anymore nodes is becoming more of the norm... and yes, I am in chemo mostly because of the positive node... but will also have radiation (unsure if I will get radiated in armpit yet).

If I had had a MORE positive node (not microscopic) I think further dissection would have been in order... and I would have been ok with that. I am on the path or no regrets... but I also don't want unnecessary node removal that could lead to life-changing problems (lymphadema).

heathermcd · January 2011

smile_on : we have very similar stats and are the same age. How long after surgery did you develop LE?

Smile_On · January 2011

Heathermcd,

Wow, our sats are pretty similar. I had surgery in June. I went in to a specialist in Dec. and she confirmed lymphedema. I had started radiation in Nov and when I noticed considerable swelling I was trying to work again so I don't know if one or both of them triggered the LE. My LE is under control now as long as I take it easy, do therapy, and wear a compression sleeve during times that I know are triggers for me (long car rides, grocery shopping, cooking things I have to stir a lot).

My LE therapist said that some people go 20+ years before LE kicks in, and some don't ever have a problem. I caught it early and am hoping we can keep it controlled. She gave me a set of exercises that make the muscles contract in a specific order to push the lymphatic fluid out of my arm. They are different from my PT post-mastectomy ones and I do those 1-2 times a day and elevate my arm for 15+ minutes after too. I am learning what my personal triggers for LE swelling are, trying to avoid those, and trying to do more very slowly to let my arm adjust. I think I was so ready to "get back to normal" that I pushed myself a little too hard too fast.

PM me if you ever want to talk.

LizM · January 2011

I think that most of the ladies here have answered your questions regarding checking of the lymph nodes. With invasive bc it is at least standard protocol to check the sentinel nodes for possible spread. If sentinel node/s is negative, you are done. If positive, there is discussion on how many more nodes to remove and someone here posted the latest studies that show removing more nodes does not necessarily increase survival; however, for some women (myself included) it may give one peace of mind to remove more nodes and no for sure how many were positive. Normally (not always) if sentinel node is positive that is your ticket to chemo. I applaud you for coming here and getting informaiton on your wife's behalf but please remember that it is your wife's body and her deicison. It is very important for her to make decisions that are right for her and that she can live with. I made the decision to remove both my breasts and have immediate reconstruction. My husband may not have totally agreed with my decision but he supported me 100% because he knew it was my decision to make. I had to make the right decision for me and a decision that gave me peace of mind. It is natural for your wife to want the cancer out of her body as soon as possible and to be less concerned with side effects down the road not related to cancer. I do have some of those side effects but I still would have made the same decision. Just my two cents.

Sandeeonherown · January 2011

I also had sentinel nodes removed with my lumpectomy (my cancer was just barely under 1cm and I a healthy 48 year old woman). The took 7 nodes (out of what...30 something?) as I had said 'take a good sample..be safe' ...I had radiation and will be on tamoxifen for the next 5 years. I recovered very quickly and was back in the gym lifting weights within 2.5 weeks...moving my arm and ensuring good mobility really helps and will hopefully keep my from getting lymphodema. I

I opted for a safe margin and number of nodes and I do not regret the decision...not sure if that helps you out or not.

mrsnjband · January 2011

They didn't do my injection right & the surgeon couldn't find my sentinal node. So she did a complete node disection. I don't know how many she removed but I had 5 positive. I do have lymphedema now but I went to therapy and learned how to do the manual lymph drainage & I wear a compression sleeve. So it is under control. It beats the alternative as I am now a three year survivor. I know it is overwhelming but it is all do-able. NJ

Claire_in_Seattle · January 2011

Hi Breezy....

I get the being active bit. I exercised throughout treatment which was surgery, chemo, radiation. I had a grossly positive sentinal, but no more were affected even though I had 21 removed. I am just fine16 months past surgery.

Look up the work of Melinda Irwin to get a handle on exercise.

My picture was taken about one month ago. I skied 12 miles that day including a 3k uphill climb. This is x-country. I did a ton of sking over Christmas and New Year's until it decided to RAIN so back to cycling.

I do weights and crunches plus walking at least one mile each week day with major exercise on the weekends. I did this throughout active treatment once my drain was removed.

BTW - I did this with the approval of my oncology team. So make sure you talk to them too. Wishing you and your wife the best. - Claire

Wife Just Diagnosed - Questions

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