Decision Overload!

ojoyjoy

Hi everyone, 

I'm a newbie here. I have been all over this forum and what a help it has been. Here is my story thus far. I was diagnosed last month and have already had a second opinion up at Stanford. I have decided I want to have my surgery up at Stanford and have them be the "bus drivers" of my treatment after. We are still getting more testing as they think they see a third spot on my left breast where the other 2 ILC tumors are. There is so much information to process it is overwhelming. I'm kind of a difficult case as far as treatment goes as I'm a cancer survivor of lymphoblastic lymphoma which I had at 14. I had a rare form that was in my bone and was treated very aggressively up at UCSF. I under went almost 2 years of chemo (10 different drugs) as well as Rads for two months. I have had the lifetime max on many chemo drugs I was giving as a teen. If I'm to need chemo there has been debate on what it they would be as well as debate as far as radiation goes. I also have a Papillary Neoplasm on my right breast that is benign but precancerous and they want to take it out as well. Lucky for me I have had a healthy happy life since my last battle with cancer until last month when I discovered the lump on my breast. They reality of the rough road ahead hit me this weekend after I had time to process all the new information from Stanford as well as the more testing needed. I guess what really hit me hard was the choice of surgery I'm going to have to make. I feel as though I'm leaning towards a having a BMX because of the sneaky nature of ILC and the fact that I already have a precancerous lesion on my right breast. After pouring over the reconstruction section of this forum I found that I need to do a lot of homework. I do know that I would just do the spacers and implants but there is a lot to know and to ask the PS to make sure I'm getting the right thing for me. I'm a hairdresser and use my arms all day so less surgeries are better for me and I'm for less surgery anyway. I'm sure I'll be posting my concerns on the reconstruction part of the forum but there are still some information to gather from the doctors before I can make a decision. Anyone who is willing to give me some insight on how they made their surgery choice or have a tips for this journey would be greatly appreciated. Thanks in advance!  

Lissee

ojoyjoy,  hearing the words "You have breast cancer" hit me like a brick. my knees buckled and my head felt like it weighed 100lbs.  The doctor who told me of my diagnosis was (pardon my French) a complete a-hole.  Immediately I went to see a surgeon to have the lump removed. It was 1cm, and had moved to 1nod. Surgery happened in seven days.  Not much time to ponder options.  Ideally I should have seen the oncologist first, but going back to the a-hole doctor, it was the option given to me.  To say that I was naïve about the industry of health care, is frankly the understatement of the century.  Its a business first, and healthcare is second.  My surgery went well, healed fine and preceeded with four rounds of chemo and six weeks of radiation.  4 years 4 months later I tell people that I make sure I do my homework, and get informed.  I changed virtually everything about my life, especially my diet.  The choice of what to do comes down to personal level of comfort with the downstream effects.  What ever you decide, stand behind it, and don't look back.  

lekker

ohjoyohjoy - I'm so sorry that you're going through another cancer diagnosis.  Did you have radiation to the chest as part of your LL treatment?  I ask because it might limit your options for adjuvant radiation which in turn might limit your surgical options.  Chemo is a separate decision and if you turn out to be node negative and HER2 negative, you might consider asking for the OncotypeDX or mammaprint tests to look at your recurrence risk and the utility of chemo.  If your main objective is the unimpaired use of your arms, be sure to state that early and often to all surgeons and rad oncs.  That might elicit different suggestions than if cosmetic outcome was your priority.

I hate to add to your overload, but have you considered speaking with a genetic counselor?  A GC would be able to look at your personal and familial history of cancer and certain other conditions to see if there might be likely mutations at work.  The reason for this is that if you do have a mutation in certain cancer-associated genes, it could influence surgical and rads decisions.

The time between diagnosis and starting treatment can be unbelievably stressful.  To me it felt like I was trying to learn a whole new language. It sounds like you trust your team which is great.  Write down all of your questions as they come to you (I used the notes feature on my phone) then you can organize them by specialty before appointments.  Keep us posted!

vbishop

Sorry you joined the club!  I will try to help by giving you the condensed version.  Diagnosed ILC with 3 tumors (one in situ).  After surgery path report showed a total of six tumors in one breast ( 2 in situ).   My surgeon didn't give me any options other than a bilateral mastectomy - which was fine by me, because I would have asked for one anyway.  No lymph node involvement so I was able to start reconstruction (with tissue expanders) at the same time I had my BMX.  Note:  I went to the TE thread after the fact.  So glad I waited.  So many horror stories, but my experience has been good.  Is it uncomfortable?  Yes?  I felt like I had a steel breast plate on and could stop a bullet. Did it hurt?  No and I'm a wuss when it comes to pain.  Was it worth it - Yep!  I started with my normal size (300 grams) and finished with 435.  It took me from a barely B to a D...but they look natural and not like a freak; it's like I've had them all along.

Good luck!!

 

mdg

I am so sorry you are joining our little club....  it's not so fun but at least you will be surrounded by many other great women to support you!  Choosing the surgery can be hard.  Sometimes, the choice is made for you.  I wanted a DIEP reconstruction because I did not want to put fake implants in my body.  Once I got into talking to the plastic surgeons, I realized I was not a candidate for DIEP because I was too thin.  Both PS's I consulted with agreed on that.  Neither PS would do any reconstruction procedure involving muscle on me either because I am a fitness instructor and I workout all the time.  They both seemed to fear using muscle would compromise my lifestyle since I am so active.  I appreciate them being honest about that.  Both surgeons recommended tissue expanders and implants for me.  Ultimately, that is what I did.  I am very happy with my results.  I am completely active - I teach aerobics, do yoga, do pilates, run, etc... and I have no issues.  Ask your PS about your ability to use your arms with each reconstruction option. I can tell you that after a BMX it takes time to heal so you will be off work a while.  Best of luck!

ojoyjoy

Thanks for the support ladies. 

Lekker: I have talked with a genetic counselor and they have run a full panel on me. They did mention the OnkotypeDX and I was told that they determine this when they look at the lymph nodes during/after surgery. I know that I'm being tested for the P53 gene which is a tumor suppressor protein. If that comes back positive (chances are slim) then they would not want to do radiation. Radiation can cause cancer....even more so if you are missing this gene and with my prior history it would not be good. More appointments on this coming Monday and Tuesday and I'm sure there will be more answers that bring up more questions, ha! A lot of moving parts in this BC crap. My husband is good at making notes on questions that arise and has been on me to do the same. Thanks for giving me the push to do it. I'll add some to my phone tonight. Will keep you posted. 

ojoyjoy

mdg- I can tell already that were a pretty special little club. I've been told that I'm too thin to do a DIEP reconstruction as well. After watching a very informative lecture on the different types of tissue reconstruction I know that DIEP is not for me. How long did it take you to get back to work after BMX? Just trying to get a idea on how long I will be down to better prepare my business end of things. Being self employed adds another moving part to the mix. 

vbishop

ojoy -

Recovery for my BMX was pretty quick, work wise.  I worked from home 1/2 days during week 2, the off the office week 3.  I started reconstruction (tissue expanders) as part of my original surgery which did not add to my recovery time.  So...2 weeks of taking it easy (mainly because I couldn't drive).  Let your body be your guide, as everyone is different.  For me, it wasn't bad.  And I am a baby when it comes to pain. 

Good luck!

Jennie93

If you are concerned about retaining full use of your body I would highly recommend reading this thread: 

https://community.breastcancer.org/forum/44/topic/...

But just be aware that whether you choose recon or no, you will never have full use of your arm again on the side that had lymph nodes removed.  If you choose the BMX make sure you tell them NO SNB on the prophy side!  

vbishop

Ojoy -

Once again, I must be the exception and not the rule.  I had three lymph nodes removed during a sentinal lymph node biopsy.  I have full use of my arm on the sentinal lymph node biopsy side.  I do know other BC friends that have lymphodema on the lymph removal side and definitely have limited use of that arm because of lymphodema issues.

My best advice - talk to your doctors and go with your gut.

Hugs!!

ojoyjoy

vbishop - thanks for sharing. I know everyone's different but it helps to get idea of people's experiences. I know I will have to take more time off than you because of my occupation. I'm a hairstylist and use my arms and upper body all day long. Have been looking into getting an assistant to help with shampooing/drying & styling the hair. I know when I do go back to work I will have to ease back into it with short days. No more 10 hour days for me for awhile. Maybe this is my body's way of saying you need to slow it down

Jennie - thanks for giving me the link to that thread. It brought up a lot of questions for me to ask the PS and a couple to ask the BS. 

Does anyone have any suggestions on questions to ask the BS who will be doing the BMX? I have a few but never having one I wonder if there is something I'm missing. Is there anything you ladies would have wished you'd asked? Is there something I should be aware of that the BS could do or not do that would effect the reconstruction part of this journey? 

vbishop

ojoy -

My only suggestion is to ask if you can have the lymph node biopsy ahead of surgery.  Typically, the docs remove sentinel lymph nodes for biopsy to check on cancer spread during initial surgery.  However, my BS knew that I only wanted to do reconstruction if I can start at the same time as my BMX.  So he scheduled the lymph node biopsy prior to my surgery and gave me time to visit with the plastic surgeon (cuz I wasn't going to even talk to the PS if reconstruction at the time of my initial surgery was not an option).  Lucky for me, no lymph node involvement, which meant no radiation, which meant I had the green light for reconstruction.

Just a thought.  It does not add recovery time to the surgery (which is why I wanted to do both at the same time).

Anonymous

Jennie---my mom had ILC many years ago (is a survivor of over 27 years with no recurrences); had a lumpectomy, radiation, tamoxifen;  she had an ALND with 9 nodes removed, developed lymphedema about 6 years later, but fortunately it is mild and she has FULL use of her arm.  

anne

Rosiesride

I also have full use of my SNB arm...3/11 nodes and axilla disection...I still am a little numb in back of arm and sometimes the web pops up but it seems to work itself out when I do stretching...I kept my lumpectomy and did not have mastectomy.  I hope I don't have lymph edema but I know it's a possibility....will deal with it if it happens!  Hope for the best!

ojoyjoy

Vbishop- great suggestion about getting the lymph node biopsy before surgery. I've added that question to my list. I would prefer to do reconstruction at the same time as well. Thank you! 

Lissee

my hair stylist is a double mastectomy cancer survivor from 15 years ago.  She had a few struggles early on, but she figured it all out.  Sending good vibes to you. 

ojoyjoy

Lissee - good to know. Thanks for the good vibes.....I'll take as many as I can get I'm going to see the BS today to get more information, answers to the boat load of questions I have and hopefully a surgery scheduled. 

ojoyjoy

Hey everyone - I had a good visit with the BS and have made my mind up to do a BMX with TE. In terms of the node status, the MRI was inconclusive. They will do the node biopsy at surgery. Praying that my nodes are negative! The MRI did detect a third very small tumor in my left breast but because I've chosen the BMX, no need to biopsy. I have a consult with my PS on Tuesday and the surgery set for June 26th. 

So onward I go. I feel solid and confidant with my surgery choice. I have 5 weeks to get myself and my business in order. It feels good to have a decision made and I'm so ready to get moving on with it. 

I'm grateful to you all for your support and encouragement. 

ojoyjoy

vbishop

Ojoy -

Isn't it great to have a plan in place, even though details are still being determined?  That's half the battle.

A couple of suggestions to help down the road:

Check into Heal in Comfort shirts.  They have Velcro closures and inside pockets for the drains.  A friend got me one and it was wonderful. 

Allow people to pamper you.  That was a hard one for me until I realized I couldn't even open the fridge door for the first few days.

My local breast cancer resource center sent me two small pillows for under my arms.  I didn't think I would use them.  I was wrong.  They were wonderful!

When I was allowed to shower but before the drains were removed, I used shoe laces to "hold up" the drains while I was showering.  I looped the shoe laces around the drains and then around my neck. 

Your PS will let you know what your restrictions are.  Listen to him/her, don't push yourself, and let your body be your guide. If whatever you are doing pulls, tugs, or hurts....don't do it.

 

 

 

 

kareenie

be aware that if you get implants your pec muscles will be cut. there is a third reconstruction option, fat grafting. if you are able to keep some skin yyou will have great results. look into dr lauren greenberg in palo alto she is doing this. i have not used her bu some virtual friends have.

Jennie93

Well.... I guess it just depends on what you consider "full use"....  But the fact is, if you have had *any* lymph nodes removed, you are at risk for lymphedema.  For the rest of your life.  And the list of things you cannot do is a long one.  No blood pressure, no IVs or any kind of needles. No heavy lifting.  No tight clothing or jewelry. No heat or cold - no hot tubs, saunas, no ice packs if you get hurt. Be careful to avoid burns while cooking, even sunburn. Any break in the skin no matter how small is cause for concern. Something as tiny as a mosquito bite could be what triggers it. And that is just the beginning!  Not trying to be negative here, just realistic. This is one of those things that nobody tells you beforehand.  So tell the surgeon - no SNB on the prophy side!  You do not want to have both arms compromised if you can possibly avoid it.  Just read some of the rants on here from women who have a terrible time getting docs to use the leg for BP, IVs, etc.   

mema4

Wishing you the very best on your upcoming surgery. It sounds like a great plan and with good open dialogue with your care team, it will really help. I had my lumpectomy (left breast) in December '13 and Mastectomy in Jan '14, no radiation or chemo. I had TE placement at the time of surgery and had exchange surgery almost two months ago. The pathology and the Oncotype Score helped to make treatment decisions and I liked having my numbers to review and I made darn sure I understood them. I think I've been fortunate in that my team, MO - PS - BS, have all worked with me to make sure I've understood each step. Every visit I take a list of questions, some of which I've read from various sources, but mostly my own questions. Only two times have I not had someone with me. I tend to forget things when I'm there! So have a good note taker.

I agree having a shirt with drain pockets. I had pajama tops that buttoned  down the front and I used Cure Diva's drain pockets. You get several in a pack. You just stick them on the inside of anything and put your drains in them. Since my PS used glue over the wounds, I could take a shower in 48 hours. I had a reduction in the right breast with a new implant planned.  So, I just wore one of my PJ tops with the pockets so I didn't have to worry about the one drain falling. I also wore an old shirt or one of hubby's older shirts, stuck a drain pocket inside and we could get me out of the house! Especially with drains, you spend time sleeping upright, I spent mine in a recliner or in a boxy chair with an ottoman. It helps to keep you from moving too much when you sleep. But after drains, this kind of went off and on during this whole process simply because at times I was uncomfortable or sore. My PS was very aggressive with the TE fills, a 100 cc at a time. Did throw away those shirts and PJ tops! Never wanted to see them again!

Anyway, the surgeries are over, on my AI, and still letting these implants settle. In several months I'll have a new nip to match the other and the scars don't bother me. They are a part of me now. They are like stretch marks - your war wounds! I'm blessed, my cancer was detected early by regular mammo even though I too have dense breasts. I still support mammograms even though they don't catch every cancer. Same with breast MRIs. Everyone has a different story to tell on the best way to diagnose.  I had sentinel node removed at the time of surgery and was clear. My left arm has pretty good flexibility and I do some stretching exercises to keep it from stiffening. Now that the implants are in I have to do physical therapy to be careful of this phase of healing and it's going good. I favor that arm and when it gets sore I know to take the Ibuprofen and rest it until it's not sore. Have your PS and/or MO check its flexibility everytime you see them, especially if it seems stiff or you can't raise it as instructed.

Have your MO or PCP give you information on the Lymphedema condition. You'll always have to be aware of any swelling and it's a condition you have to educate yourself on...no heresay info on this. We have different doctors who support different areas of research but watching your body for symptoms or trying to prevent it from occurring is best.  For example, I do wear jewelery on my left wrist and hand but my doc says it's okay, of course, I don't wear tight jewelry. I do remind anyone to not take my blood pressure on my left arm and I do the same for blood work or shots. However, I have a strange movement disorder in my left hand that  neurologist is trying to fix so I think I'm really screwed!  He is working with my MO and PCP on short term treatments when ice or heat is needed. If you're in doubt, just don't do it and then find out later for sure. Err on the safe side. 

I know how lucky I've been with this disease so far. Early detection, good scores, good team. I know it can all change quickly. Whether I'm good or bad, it can rear it's ugly head and take me down. Cancer has touched my life closely so I'm familiar with the boogie man. I just don't want to sound flip with how good I have it compared with others suffering so much more.

Please keep us posted! Many blessings as you move forward...

ojoyjoy

Jennie- I have to have a SNB. I know I'm at risk of lymphedema but if the nodes come back positive I will  have to get them removed. I do not understand what prophy side means? Would you mind elaborating for me?  I don't know all the BC lingo yet

Vbishop- great suggestions!  I will look into getting the small pillows and the shirts. 

I plan on being a very good patient. I will do as I'm told (restrictions and stretch exercises) and listen to my body. I want to heal the best way possible and will not do anything to delay or make it worse. I'm taking a full 2 months off work and if I'm to need more time off I will take it. 

The first plan for this journey is set and it is great. 

Thanks for the tips! 

Ariom

Hi ojoyjoy! The prophy side is the non cancer side if you are having a BMX.

The whole SNB issue is a difficult one. Some just don't want to have it and to take the risk that there is no invasion and that is absolutely their choice.

For me, I went ahead with the SNB even though the chances were fairly low, that there would be an issue, but I just couldn't take the chance of having to go back for a full axillary clearance, if something was found. My Mother had a radical Mx in '94 with a full clearance because the SNB wasn't available then. She had no invasion, but she did have LE for the rest of her life.

It looks like you're all set, you've gotten some great advice from the others here. If I may add one thing that I wish I had taken to Hospital with me, throat lozenges! My throat was so dry and sore from the breathing tube. I woke up starving, but I couldn't swallow, so lozenges are at the top of my list for absolute must haves!

Having a couple of months off is a great way to take the pressure off. The stretching and the exercises are a great help, as is massage.

Try not to overdo it, most of us have learned the hard way. You may feel fabulous, but you still have to take it easy! Rest when you need it, your body will let you know!

All the very best for an uneventful surgery and a really speedy recovery!

ojoyjoy

Ariom- thanks for clarifying. Because of my past history it is not worth it for me to risk the chance of missing something. The fact that my prophy side already has a precancerous lesion that they want to remove is alarming enough for me to go with the SNB on that side as my BS has suggested. I know the risks of LE and in my case it is worth the risk to me. 

Throat lozenges are on my list of things to get thanks to you. After meeting with the anesthesiologist  today they said I would have a sore throat do to the breathing tube. I had read your reply before my appointment and it clicked.....throat lozenges Great suggestion!

Stretching and massage I can do. For me I can tend to overdo it a bit but I get the feeling my body is going to let me know when I've done too much. I really want the smoothest recovery possible. I'm going to give myself permission to not do and heal. Maybe this is one of my lessons on this journey. I know there is a few lessons in this somewhere! 

Onward I march! 

Ariom

Hi ojoyjoy, so glad I could help! It sounds like you have everything in order and I wish you all the very best for your surgery.

I look forward to hearing how you're doing. M x