Anyone Starting Chemo Jan. 2010?

Nkrun - When I was initially diagnosed, I was going to have a lumpectomy.  I had NO thought about a mastectomy.  I then found out that I was BRCA1+ and it changed my numbers substantially.  For me, I was more concerned about a new cancer which is a different worry than you have.  There are many of us that had a bi-lat but most don't.  The one thing you really have to know is that there will be no feeling in your breasts.  I met a women who had a DIEP and she has no feeling from her collarbone to her belly button.  I will be having implants so the numbness will be localized for me.  Also, I had a skin and nimple sparring mastectomy.  I thought this was commonplace but have learned that this is relatively new.  Once I get my "stuffing/implants" in, my breast will look like they did many years ago (before breastfeeding and weight gain). 

I am not sure I gave you much help but theres my two cents.  Good luck on the decision.

NKRUN- I'm sure that you know that everyone needs to make their own decision about lumpectomy vs. mastectomy...but since you asked, I will tell you what my experience was...I am 44 years old and had cancer in my left breast.  I work for a large group (300) of physicians and am very fortunate to have the care that I have.  When I went to the Breast Surgeon, she gave me all of my options...lumpectomy, mast, or bi.  She wanted to make sure that I knew I did not have to have a mastectomy.

I went to radiology to have an MRI and I spoke to our radiologist that specializes in breasts.  She did not want to sway me, but I mentioned to her that I was thinking about a bilateral.  She told me that if it was her, that is what she would do.  I also went to my plastic surgeon and he did not push mast. or bilat, but when I brought it up, he said it is what he would want his wife to do and since his wife is a breast surgeon also, it is what she would do.

I took all of this information in and decided that although the physicians did not come out and say that a bilateral was best in my case, they agreed when I brought it up and agreed that it was the best option.  i decided to have a bilateral with reconstruction on 12/8/09.  They expected the surgery to take 4 hours, but it took 6 because of my "large breasts"...Who knew???

 I was in the hospital for 2 days, and never once took any pain medication after surgery except Tylenol (plain old Tylenol).  I must say that there was really no "pain" it felt more like I had worked out too hard and had a muscle ache all over my chest.  I was not in any discomfort, it's just that the surgical bra was quite binding.  The worst part for me was to remember not to do things that I usually do...like dust and vacuum and pick up anything that weighs more than a gallon of milk.

Anyway, that is my story.  I really did not feel a particular "attachment" to my breasts and what 44 year old woman wouldn't want a "fresh" perky new set!!!! I am glad that I did it because it puts my mind at ease (as much as it can be) and I know that in a few years down the line, i won't have to do this again.

As I said, this is your decision and there are no right and wrong.  You need to decide what impact it will have on your life and your emotional well being and be sure that you are making the decision fully informed and based on what is best for you.

Take care of yourself!

Tammy

Hi Ladies,

I wanted to mention something that I just noticed after reviewing some old posts...There really is such a thing a Chemo Brain!

If you look back at all of our posts, we started posting with proper grammar and spelling and our sentences were punctuated.  As we have progressed through treatment, our letters become transposed and our spelling is terrible!  It just is another example of how different we all are, but how similar our experiences. 

We are all in this together!

nkrun - I had a 7 cm tumor and am glad I had the uni mastectomy.  I have a friend that did just the lumpectomy with that large of a tumor and it makes it difficult to get your shape looking right.  She wishes now that she had had the mastectomy.  I have the prosthesis and it looks great!  Haven't decided about recon yet.  Just trying to get through the chemo.  It really is such a personal decision. 

I am so jealous of everyone that is done!  My last chemo isn't until June 24.  Then I still have to have herceptin until April.  Port has to stay in for a long time!  I am having terrible issues with diarhea and severe abdominal cramping for the last 4 days!  I think it is the taxotere tearing me up!

Read all of your posts.  Praying for everyone.  This forum has been such a blessing to me.

nkrun- Just popped on and I will just tell you what I would do- the most aggressive action.  If you are questioning it now you probably worry about it later.  Go with your heart- these decisions suck!  I could have had lump. but I would have been left with half a boob- and when they kept telling me how aggressive my tumor was I thought I better be aggressive as well.  I did decide to keep my other breast as much as I thought I did want to.  Now I must say I'm happy I kept the good one and glad I got rid of the other one (I do miss her though).

I'm 2 weeks out from my bilat surgery.  Things are slowly improving.  I meet with the onc in a week to go over what chemo I'll start next.  I'll be so glad to be done with this crap.  I can't even remember what it feels like to feel good.  But I did enjoy eating supper outside tonight and the baby was a happy boy. 

friscosmom- Not glad you have to go till June, but so glad to have someone to go through it with! 

Michelle- that was a good point.  With my tumor they thought it was a certain size, but when they got in it was much bigger and more aggressive than they thought.  I feel better that I had the mastectomy.

nkrun-thanks for asking this question about lumpectomy or bmx.  It makes me re-think my process and makes me feel better about my decision.  I'm 37 and don't feel too strongly about keeping my breasts or getting new perky ones.  So, for me it was all about recurrence and avoiding unnecessary surgery.  Originally, everyone said this was straightforward and I was a candidate for a lumpectomy.  Since my main concern was finding out about my lymphnodes, and it was a quickly scheduled surgery, that's what I did.  They got clear margins, and the breast looks better than I imagined, but not terrific.  I had a false negative SNB and knew that after chemo I had another surgery planned to complete the axillary node dissection.  SO, now I go through chemo and start to spend some quality time on these boards.  I send my records to an oncologist in Virginia for a second opinion. The doc in VA said he concurred with my docs all the way, except he would have recommended the mastectomy over a lumpectomy. I started talking frankly to a lot of people about breast cancer.  What I kept hearing was a mastectomy was the way to go. My breast surgeon was adamant that a lumpectomy would do the trick, and she did a good job.  Plus, the percentages of recurrence don't necessarily support a MX.  However, I have been "outside the norm" on all of this stuff.  So, percentages don't give me any peace of mind.

I just kept reading about people who were back here after having had a lumpectomy the first go round, or who after a mastectomy found cancer that wasn't seen on any scan yet.  So, after some struggling, I decided to go for the BMX.  I know that it's a big deal surgery and that I'll experience numbness and potential complications, but I decided that I could live with that more than coming back to chemo when I could have stopped it.  Now, when I finish my 2010 Year of Cancer, I will know that I did absolutely everything I could to conquer this. 

Good luck with your decision, and take the time to discuss it with more people.  Ask your doctors what they would choose for themselves or their wives. Oftentimes, when I ask that question I get a better answer.  All of my doctors, except the breast surgeon, said they would probably do the mastectomy.  But, they didn't offer that information until I asked it that way. My breast surgeon didn't give me an answer.  She simply said she supported my decision whatever it was and would do her best surgery.  This is a tough decision, I know.  It would be so much easier if there was just a straightforward plan that was black or white. 

Happy Friday!

Friscomom--your story sounds exactly like mine...smaller tumor (mine was 1.6 cm) with little possibility of LN involvement, etc....so my BS suggested go for the lumpectomy. Which I did.  Unfortunately, there WAS LN involvement, I had to have axillary node dissection, and a further revision of my surgical margins, and now my breast looks exactly how you have described yours (except I am --ooops WAS--a B cup). My right breast is also caved in on one side and my nipple is also facing to the right (not front and center). They tell me that it will "fill in" but I think thats bullcrap. I also had the similar experience of finding a new (but benign) lump while being on chemo.

I wish now that I had gone with a mastectomy instead of the lumpectomy. So now I have my little deformed breast, I really don't like the way it looks, and when I questioned my BS about maybe some kind of recon or plastic surgery in future, he kind of waved off that idea and said to wait to see how I do after rads--something they told me I would not have needed had I opted for the mast instead of the lumpectomy in the first place.

Again thanks for sharing advice and experiences I'm really taking it all in when making a decision. It looks like most women, including those outside this support group, opt for either a uni a bi even when a lumpectomy is an option. I'm really confused by this because it seems like the experts (oncologist, breast surgeon and plastic surgeon) recommend the potentially least profitable(lumpectomy) option.  With my slanted view on the cancer industry, I wonder what what is in it for the docs. Yes I know deep down inside they put the patient first and actually care about our outcome.  This decision is harder than thought. My husband and kids  say they will support my decision either way.  So this is why I'm really appreciate everyones input. I feel like those who are not in the trenches cannot fully understand what is going on in our heads. 

Today I went for my weekly herceptin and taxol.  I could not get taxol because my liver enzymes are too high.   I guess taxol is extremely hard on the liver too.  When I got home from the infusion center I broke a tooth while chewing on some food.  Bummer. I need to have my dentist and oncologist get together on Monday to determine what level of dental work will be ok while on chemo. I guess it is a good thing I could not get taxol this week in case I have to have major dental work next week. Oh yeah I also have some GI issues requiring a colonscopy. yipee  Oh and my boss thinks I pushing myself too hard at work and said I should think about cutting back. I should be glad, but I enjoy playing the wonderwomen "this cancer thing won't get me down" role. On another note since I'm feeling like crap, I had to cancel my son's 18th bday party that was scheduled for tonite. I think he understands but he is still bummed.   Yes I'm having pity party. So thanks for letting me vent. Too bad I kicked the wine habit when I started chemo because I could sure use a glass. 

Hi MSLRG,

Well, I can see you work for a school district.  I assume you are under some kind of contract?  If so, what are the terms?  Ours are annual (which are renewed in March each year and stipulate separation terms).  Do you belong to a union? If so, they must be negotiating separation terms - do you know your rep? Are you out on official Family Medical Leave or just on sick time? The FMLA is federal law and takes precedence over state terms or your employers terms (except they can cut jobs if there are financial issues - but there are regs around that too). Do you have a disability insurance plan at work?  Is there a person that you trust in the HR department that can help guide your decision making and give you options? 

I totally understand your panic.  But, this might also be an opportunity for you as well to get the time and rest and recovery with some income.  You are entitled to Social Security Disability because you have breast cancer and couldn't continue working - that is some income there and it's a formula entitlement.  Or, if you get laid off, you are entitled to unemployment compensation benefits - which are must longer right now than previously because of the bad economy.  How much you're entitled to depends on how much income you've earned the last year.  I don't know your financial needs, but I am assuiming your health insurance is through your employer as well and that is also a big deal. So, I totally get keeping your job for the income and benefits.

As for the overpayment - that's THEIR MISTAKE and you should play hardball in  negotiating the payback terms over a longer time. 

But, all in all, it sounds like you guys (there must be others besides you in this boat) need some legal representation to help you negotiate best terms of separation or coming back.  Among your friends, any civil attorneys who might take you on pro bono right away?  (Another way to ask for help when we're sick).  My experience is that those represented by attorneys are treated differently than the masses.  And, you need someone pretty fast to represent your best interests.

And, I wouldn't feel bad about retaining an attorney because school districts do not (in my experience) think about the individual - they are political entities who have other agendas.  It won't hurt you (like people getting mad and you and then taking it out later), it will help you instead (like they won't so readily mess with you - they will be sure they are willing to spend legal $$ on whatever the issue is).

I don't know if this helped but I also send hugs out to you, because feeling physically bad doesn't help us do our best thinking.  When it rains, it seems to pour.  But, it doesn't pour forever - the rain lets up and the sun shines through eventually.

 And, I was severely anemic and my onc had a bag of iron infused each week for 3 weeks to build that hemoglobin back up to a moderately anemic level. Now I get an iv bag of iron every other week to keep it up.  That helped, plus I ate lots of organic egg yolks, spinach, and organic calf liver to help my levels.  I'm also neutropenic which is why I've been getting the Neutopen shots every day.  Taxol did a number on me too.  I've been able to avoid the blood transfusion so far.

Pat

Nkrun - How frustrating!  I was telling someone the other day that it just wasn't right to have the stupid little things happen like dental, sickness, car breaking down, etc. when we are already having to deal with this bc!  So sorry about your son's bd.  Hugs and keep going!

mslrg-Wow!  I agree with what pagowens said about making the money  pay back on your terms.  Hugs and hang on!

 11ty..I get Taxol DD and mine went down to 1.2.Now I have to get the shot. I wish you the best!

Hi 11tyBillion,

I'm on the same schedule as you - 12 weekly Taxol.  My WBC tanked around week 4 - I've been getting Neupogen shots (2 to 3 per week) to keep my WBC up since.  I get #8 of the 12 on Tuesday.  I don't know why he hasn't done that.  I don't think there is anything else that can be done, except a blood transfusion, to address it (ie nothing you can eat, excercise, etc.).  You can't do the Neulasta with the weekly chemo.

Call your oncologist and find out why he's not using the Neupogen.  If there's some chemo reason, please share.

Thanks,

Pat

During the initial conversation with my medical oncologist, she told me about both neulasta and neuprogren shots.  She recommended that I automatically receive the neulasta shot the day after each chemo round.  I did some research and then agreed.  She also told me that if my WBC reached a certain number, there would be no hesitation in admitting me to the hospital and receiving blood transfusions.  I knew all of this before chemo ever started.  My target was to keep treatments on schedule and to not have to decrease any chemo. 

I really never thought I would need blood tranfusions but after my final round of chemo, I became ill very quickly.  I became faint and then very, very nauseated.  Additionally, my temperature rose.  In research, I learned that very few die from chemo itself but more so from the SEs.  On the way to the hospital, this did scare me. 

My oncologist went over everything very thoroughly before chemo ever began.  Please do not be frightened to ask questions...it is your body and your health.  I have learned I need to be my own advocate when it comes to managing my health.  Good luck and I would certainly make that call on Monday morning.