June 2012 Mastectomy

NanG - You sure hit the nail on the head! For me week #1 was all about learning about pain management and limitations for the short term. It was tough, but thanks to modern medicine, supportive family & friends, it was doable. 

During week #2 I spent my time wandering through a deep dark tunnel ... missing alot of the things you noted and some other silly things like dusting, vacuuming, making dinner, doing laundry, being in charge of my own destination, etc. I spent most of the week traveling between tears and sleep ... depression. I came to the conclussion that there are a myriad of reasons why I ventured through this dark tunnel: 1). True reality that I have cancer - and it will always be a part of my life; 2). watching my DH show his love for me (not by words, but actions) and me not having the emotional strength to reciprocate his love; 3). realizing my 3 sons are amazing young men - taking this nasty monster and being a huge source of physical & emotional strength for their Mom; 4). learning that we cancer patients are lucky ... you see, my 1st husband, father of our 2 eldest sons and my dear friend has Lou Gehrigs (ALS) disease - a progressive motor neuron killing disease. He always says he wished he had cancer ... because there's hope for cancer patients. For him, there's no day better than today. 

With all of this on my mind this week I struggled each day to stay focused on the fight. Thanks to the help of my family, close friends & wonder team of doctors, I made it through this dark tunnel. While I know there will most likely be more visits through this tunnel, I also know there is light at the end ... it will get better & I have the power to choose to be happy for what God has handed me.

A large part of my inspiration comes from my 1st husband & his fantastic outlook ... for those of you who are interested, you can read his blog by visiting: http://jimsjourneywithals.wordpress.com/ 

Ciao June Bugs ... we are one lucky group of gals ... after all, we're here to enjoy this beautiful Saturday! 

@curveball - they do not know. At the moment it depends on my tolerance and side effects of the chemo and no re-occurrence within 2 years. I am not thinking too much about it at the moment, because if I know that I cannot have that operation my quality of life will not be that great and it starts affecting my motivation for treatment. I am trying (it's pretty hard at times) to just focus on one step at a time.

@kirwin524 - thank you. When I read what you wrote it struck me that something I may have typed might have come across in the wrong way. Maybe it is post surgery blues or drugs or both, but  I certainly did not mean to imply that I think other cancers are not scary, by any means. Any time there is cancer in the body it is frightening and contrary to what some people have told me (insert eyeroll here) there is no 'good' cancer.

That said, I am still struggling to even understand the type I have. They have said that it is a less than 1% chance to have the features in one cancer combined like I do....I cannot find any information anywhere so I have started to reach out to some specialists while accessing the treatments and recommendations I have been given so far.

It has been a whirlwhind - they let me go out of town for a family function 2 days after my diagnosis, but immediately when I returned I had my pre-op appt with x-rays and blood tests. Once that was done, I was 'on call' for surgery meaning that the hospital would call the day before the surgery was scheduled. It went like that until the 13th of June (diagnosis was 5/29) when they finally coordinated dr's, op room etc and gave me the 15th as a date. I post this in case anyone out there reads this and can relate - everything I heard prior was that a 4 to 6 week wait for surgery was the norm. I am trying now to take a breath and get used to my life changing overnight, as all of ours has once we were diagnosed.

Cheers to enjoying the beautiful Saturday! I am going to spend some quality time in my vegetable garden as well as rubbing some dog's bellies  

25weeks - have you tried to take something to help? It's the worst feeling. Anesthesia and pain meds can really stop your system. Smooth move (a natural root softner) has helped me a lot.

thank you @kirwin524, I am an oversensitive, weepy mess today! one of those days where you can't wait until tomorrow!  I think I have finally let my guard down a little and it's all coming out. Thank god my husband is working - I am only being looked at sideways by 3 Boston Terriers...

25weeks - it has been a week for me and I am still on protein shakes for the most part. As for going, I need a combo of stool softeners and laxatives (colace and ex-lax) to 'go', it seems harsh but the gentler methods do not produce results for some reason.  

Hello everyone!

Best wishes to all who have had surgery as well as those that have upcoming surgeries this week!

I had a lumpectomy with SNB on June 12th and did not get clear margins and was found with 3/8 nodes involved.  

Just healing from that and now I have surgery scheduled for a Radical Modified Mastectomy with Axillary Node Dissection on Wednesday, June 27th.  Little worried about the side effects but glad to get this over!

I wonder sometimes if I should've done the mastectomy first but my BS wanted to gather all of the information first and move slowly cuz quite frankly I was also a mess! 

I still don't get it, is it better to do the MX and AND after getting the information from the SNB or does it not matter?

@jazlaumir, I think it's possible to end up having two surgeries, even if the first one is a mastectomy. As it was explained to me, with sentinel node biopsy, the sentinel nodes are given a quick look during surgery, and if obvious signs of cancer are found, an axial node dissetion is done at the same time. But it's possible for the sentinel nodes to have cancer in them which is not detected by the quick look, but shows up in the complete path exam that's done after the surgery. I had a mastectomy, and my surgeon said that if the nodes were found to be affected in the full path exam, then an axial node dissection would be done later as a separate surgery.

Just for your own information/peace of mind, you might ask your doctor what course of action would have been advised if you had started with MX instead of LX (and assuming same SNB results). I will venture a guess that with three positive nodes you might still be having AND on the 27th. If so, the end result is that after the second surgery, both the breast and the nodes have been removed, regardless of whether you had MX or LX on the 12th.

@sC-squared, I am just reviewing my path report. I had the tracer injection the day before my surgery, and two locations were marked on my skin. Blue dye was injected after I was under anesthetic. Even though only two locations were marked, under "gross appearance" my path report lists three sentinel node specimens. There was one blue node in the first specimen, two blue nodes and two other nodes in the second specimen, and eight nodes in the third, which were "focally blue" (whatever that means). My surgeon told me at my first after-surgery appointment that some of the nodes may have been cut in two during the surgery, but even so, this is thirteen nodes or pieces-of-nodes removed. Most of the removed nodes were blue, which I take to mean they really were sentinel nodes. There was another node in among the removed breast tissue, but the report doesn't say whether it was blue or not.

I think the relevant question for c-squared is not only "how likely am I to get lymphedema if the rest of my nodes are removed?" but also "how likely is my cancer treatment to succeed if the rest of my nodes aren't removed"? With three positive sentinels, the cancer risk of leaving them in may outweigh the lymphedma risk of taking them out.

curveball~ It is my understanding that the sentinel lymph node biopsy was developed in order to limit the number of lymph nodes removed and hence, reduce the incidence of lymphedema by unnecessarily removing unaffected nodes and compromising lympahtic flow.  Because I have been out of practice for many years I cannot provide the current statistics.  There seems to be no rhyme or reason in "who" develops lymphedema.  In many cases (not all), the greater number of nodes removed, the greater chance that lympahtic flow is compromised resulting in lymphedema.  My concern is that women are informed that this is indeed a risk and that the risk is not glossed over.  In a perfect world, women facing breast cancer would meet with a lymphedema therapist and become informed and better educated.  It may not ultimately change what is done but surgeons, in general, tend to skip on the education and just do the surgery.  They are not the ones who make referrals to the lymphedema therapists.  It is the oncologists and the primary care physicians that diagnose and refer.  I believe the risk of lymphedema is just as important to know as any other complication of surgery.  I think you have some very good questions regarding the risk of removing or leaving potentially affected lymph nodes. I encourage you to discuss this with your surgeon and I am interested in the response.  I am simply attempting to increase awareness so that we can ask the questions and become better informed in our decisions. 

Beautiful words written by so many tonight. Smiles and tears. Inspired continually.

Wishing everyone a comfortable Saturday night , be it with humans, canince companions or the comfort of being home

Love my....My BS said there is no medial reason to remove the healthy breast. I have had many concerns over the last month....and many of the reasons I had to remove became null and void.

I struggle often with having a PMX of the left. I am undecided at the moment because I know it will be a very personal decision for me. My BS will respect and honor my wishes either way.

c-squared/curveball: Thank you both for your thoughtful responses! yes, I did have the injections prior to my surgery and the BS has discussed the risks of Lymphedema with me at length. She also asked me to attend a lymphedema class they offer as well. 

God knows if I have this straight but when I asked her how does she determine how many nodes to remove exactly when I have seen on these posts that in some cases it can be 22 removed. The way I understand her explanation in terms of the number of nodes, the blue dye gives her the area to extract but she does not necessarily know the exact number of nodes until they go to pathology. She said that when they do go back in to do the dissection is often when the numbers of nodes removed can be in the double digits.   She also initially expressed concern in doing the AND which is why she backed off of doing the AND on the day of the SNB in order to attempt to avoid it, if she found only one or two nodes involved but after receiving the final path results felt very strongly that a dissection needed to be done.  She said doing a re-excision vs a mastectomy was up to me. As you suggest curveball,  I do feel comfortable with my BS recommendation, as I see it; I would rather deal with the risks of Lymphedema versus the risk of not doing this surgery. 

 I then need to go thru chemo and rads before I proceed with the other breast and reconstruction, long road ahead!

Thanks c-squared, let's hope that I have made the right decision, but I think so! Thanks again for your thought  provoking questions, we all need to help each other think these things through!

I don't want to get Lymphedema either!

NanG: Hang in there, it's hard and we all understand those feelings and days that are just hard, hang in there!

Sandpiper1: Best wishes on your upcoming surgery, it will be here before you know it, I'm sure that you will make the right decision for you! Wishing you peace.

Lisa143: I'm glad you're okay.  I agree, the best way through all of this is laughter!

@jazlaumir--my BS is Lisa Newman and my ONC is Max Wicha.  Who is your BS?  Yes, a MX on Tuesday as outpatient - very strange.  However, Lisa told me if I don't feel like I can go home that day/evening, she will admit me.  I guess you take a ride in the ambulence to the hospital.  I'm feeling pretty nervous, enough though I had a MX 10 years ago.  I think it was so tramatic for me at that time, I pushed that experience so far back in my head, I can't remember how I felt, how long it took me to get back to feeling good, etc.  So, I feel like this is the first time.  HOWEVER, I do remember the injection for the SNB!  Did you like the outpatient facility?  Was it better than being in the main hospital?  

faithhopenluv~ I couldn't agree more!  Again, I do not profess to know what is right for any individual.., I just want us to have the information so we can make educated decisions. 

@c-squared, that is also my understanding of the rationale for SNB. I have a copy of the NCI pamphlet "What you need to know about Breast Cancer" given to me by one of my choir mates from when she had BC. It's dated 1998 on the back cover. At that time, SNB was still in clinical trials, but it was thought that it might "eventually reduce the number of lymph nodes that need to be removed for biopsy and possibly prevent or limit the severity of lymphedema". In 1998, if you had any type of invasive BC, you got a full AND and that was that. I'm just glad I had the option of SNB, because all but one of the removed nodes were clear, and the one affected node has 1mm of cancer. I think that means I will not be having an AND.

Interesting question you suggest to lovemysamoyeds. I had heard it was possible to have a false negative on frozen section, in which case AND would follow as a separate surgery, but the possibility of a false positive never occurred to me. I join you in your prayer for clear sentinel nodes for those who will be having surgery this coming week, and add a prayer for no false readings, + or -.

Glad to see that jazalaumir and her surgeon have thoroughly discussed the risks, including risk of LE.