Wifes Surgery just finished but question about lymph nodes, PLEASE HELP !!

dthompson said:

Has anyone had radiation with

Has anyone had radiation with tissue expanders

Sorry to hear that, wish I could be of more help, I had my chemo after, I had one positive found during surgery and they removed 10 more on that side.  I will tell you  her recovery will probably be a little longer now, having those nodes removed is rough.  I hope someone comes along soon who can answer your question from experience.  Again, prayers to you both. 

Patti

That was me...I was scheduled chemo first (6 roundsTAC), then surgery (bilateral w/axillary, no reconstruction) then rads (44 rounds 2x/day).  The surgeon removed 14 lymph nodes, 12 were positive.  I asked the onc about more chemo and was told I'd had the maximum amount of TAC...If I had known more then I would have asked for a different kind. 

I think waiting (as hard as it is) for the pathology to make this is decision is wise.  That report may change your Onc's plan for your wife.  Be sure to ask for a copy of the path report, and read it.  Then ask the doc for any clarification you might need.  I keep copies of all path and scan reports.  I think you should also find out if your wife's positive nodes were level 1, 2, or 3.  (In this particular case the level refers to their location.  Level 1 is closest to the breast.)

I don't know if this helps you.  If you have more questions, please feel free to send me a pm.  I hope recovery goes smoothly and swiftly for your wife. 

Hugs,

Linda 

Double Whammy said:

What words did they use - exactly?

Dennis, I want to shed a potential positive light on this.  You said "2 nodes were positive", so they took them.  It may be that 2 nodes took the die they injected and were identified as sentinel nodes, so they took them and had a look at them.  Period.  Usually when nodes are positive for cancer at the time of surgery, they will remove more nodes to be sure they cancer has not spread to other nodes.  They don't typically stop at 2 if they were positive for cancer at the time of surgery.  I had 2 nodes that took up the die, so they removed both.  Neither of them had cancer on initial pathology so they did not remove any more.  Happily,  they were also negative for cancer on the final pathology.    I'm hoping this is the case for your wife.  Get clarification of what was meant by "positive". 

Wishing you the best.

Suzanne

Good advice Suzanne...I didn't even think about that!

dthompson said:

Hi Suzanne,
Thank you so much

Hi Suzanne,

Thank you so much for the reply, I think the exact words the Surgeon used were two nodes were positive so we took all  of the nodes in her arm. When I asked how many that was she replied" we won't know until the path report gets back". With that being said it led me to believe that two of the nodes were positive for cancer so the removed all of them just in case. I am praying that none of them are cancerous but my fears are that they will be and what will we do next?  I do not like her Surgical Onc, she is very arragant and acts like she is being bothered when I ask her questions, but aparently she is the best surgical Onc in VA, but certainly not the best  in the personality or compassion department 

but it doesn't sound like it, Dennis.  Take one step at a time if you can and try not to worry about the what ifs until you know what they are.  I know the waiting is very difficult (we've all been there), but the time will evenually pass and everyone (including the arrogant oncologist) will be waiting for the final pathology in order to formulate a treatment plan for your wife.  Surgeons are all typically arrogant, no matter what their specialty.  I guess they just have a lot of self esteem!  As long as you TRUST the ability of her health care team, that is the most important thing.  And it never ever hurts to get a second opinion.  There's usually plenty of time.  As patients we want this thing taken care of asap, but often (not always) there is plenty of time to seek a second opinion.  I believe one of the most important things is faith in our health care team.

Good luck.  Hugs to your wife.

Suzanne

dthompson said:

Has anyone had radiation with

Has anyone had radiation with tissue expanders

I had 8 rounds of chemo prior to surgery. Surgery pathology results were 15 nodes out of 17 positive for cancer.  Then I had rads. That was 11 years ago and so far so good.  Sooo she will be staged too and its okay to tell the Doc that though she does this all the time it is your first and traumatic time so a bit of softening would be appreciated.  They are aware they have tendencies toward the G-d complex.  Let her know you are equals and she works for you without being angry.

Hi Dennis,

I am so sorry that you and your wife are going through this.  Hang on to the thought that chemo and mastectomies are usually the roughest part of the treatment.  I had chemo before surgery, AC x4 and Taxol x1 but had to stop after the 1st Taxol as I was hospitalized twice for side effects (once for AC and once for Taxol).  My medical oncologist recommended proceding w/ my double mastectomy as my tumor had shrunk so much (from 11cm to almost non detectible) and chemo was making me so sick.  Postop I found that I had 4 out of 18 positive lymph nodes (I knew some were + going in) and the recommendation was to complete the chemo using Abaxane instead of Taxol and then to proceed w/ radiation.  Since your wife has completed her recommended chemo regime, I suspect that she will move forward to radiation from here.  Also, I had radiation w/ my tissue expanders in and it was fine, just the expected skin irritation/burns. 

Some thoughts that might help:

1. If your surgeon is unapproachable, there may be other staff members in his/her office such as a physician's assistant, nurse practitioner or RN (not a medical assistant) who can help to listen to your concerns and answer your questions.  These folks work w/ breast cancer patients regularly and are usually very knowlegable.
2. If you have been receiveing treatment through a cancer center, they should have a nurse navagator, a nurse who helps guide cancer patients through every stage of treatment and can explain pathology/surgical reports and what to expect next.  The nurse navagator usually works closely w/ the medical oncologist and surgeon so they are "in the loop" about your wife's condition.  If you don't have access to a nurse navagator, then a case manager through the hospital or your doctor's office can do many of the same things.
3. It is ok to contact your medical oncologist's office w/ this questions as well.  They should be willing to help.
4. I really understand your worry about lymphedema.  If you haven't had at least 1 visit w/ a physical therapist who specializes in lymphedema prevention and treatment, this is a good place to start.  Then, when your wife is ok'd to start the lymphedema exercises, do them faithfully.  I felt like a T-Rex at first (only able to use forearms that didn't move much--no wonder they became extinct!) but now at 1 year postop I have full range of motion of both arms and no problems w/ lymphedema (so far).

I hope this helps.  Your wife is very fortunate to have you in her corner!  My husband was absolute wonderful during my illness, I don't know how I would have done it without him.

Sending good thoughts your way and please let us know how you both are progressing,

Penny

dthompson said:

Hi Penny,
Thak you so  much

Hi Penny,

Thak you so  much for the reply and great advice. We are at the VCU cancer center in Richmond Va. They have been great so far. He nurse navigator is awsome as is her plastic surgeon, as stated before I just do not like her Surg Onc.  She doing much better today. She is istill in pain but in good spirits, smiling and begining to walk around slowly. Hopefully we will go home tomorrow. Thanks again. God bless

 

Dennis

Hi Dennis,

I have been reading your concerns with regard to the lymph nodes and the oncologist.  I have to share that my oncologist was very difficult, she  gave orders.  I made it clear that any decisions were mine, she was not in charge.  After two very stressful appointments I asked for another person and I have been dealing with her resident.  She is wonderful and less "used to" telling people what will be needed.  I think perhaps dealing with this full time can make some doctors numb to the things they are saying. 

I also found great compassion with the nurses, when I last went in to hear whether or not Chemo would be needed, they rushed up and hugged me.  They make the visits tolerable. I realize being in the best place is important which is why I am still going to my cancer center, but there are people there that understand what you are feeling, I am sure you will find them. 

God Bless, I hope you are both home soon, that is the best medicine.

Cathy

CathyACK said:

Hi Dennis,

I agree with Vicki Sam, bring a tape recorder or use your phone, I brought paper and a pen but during these appointments one is so stressed that taking notes doesn't happen. 

God Bless,

Cathy

Hi Dennis

So glad she is doing well! 

Patti