December 2011 Surgeries - want to wait together?

yes Judy I am learning a lot about what medications work and what isn't. I am with you before this I barely took an asprin. I just feel like such a big baby. I read on here some of the ladies didn't even need their pain meds. All I can say is WOW! because I have needed mine desperately.

I am having a buring weird pain  down the inside of my arm. I am thinking maybe this is from the node removal? Would the PT be the one that would work on that issue? Has anyone been told not to have blood pressure or needles in the arm with the lymphnodes removed? I am worried about lymphodema. Do you automatically get a compression sleeve for precaution or do they only give those when you have it? 

4 to 6 weeks to heal???? I don't have that kind of time. I took this week off work, and no way can I do that again. I have never done nothing for so long of a time. My laptop is my friend to the outside world. I should be working on a novel or something, but can't think at times past the pain. I' hate living on pain meds.

It seems that some of the girls are moving on better than a few of us. Maybe because our surgeries were late in December. My ps said the drain should be out by Tuesday. I am laying low so it will come out and be able to drive and etc.

evebarry, didn't your BS tell you a time frame? If you are having a hard time with your healing so far then it may be longer. I just know my BS said I could not work or drive for 4 weeks and that he did not want me lifting anything or raising my arms above my shoulders for at least 6 weeks. I also know that the way I am feeling now 10 days out from surgery it may be longer than 6 weeks for me unless it all of a sudden changes.

I hope you start feeling better so you are able to get back up to speed.

Gabe

I wasn't told I would be out more than a week. I'm shocked it takes so long to heal. There is no way I can be out of work another week. I will go in two days the next few weeks. I will try to lay low...I am putting out about 40cc's a day. I am doing absolutely nothing. I am taking supplements and pain meds in order to heal faster. What about walking? It seems like we should be walking or doing more exercise?

Eve- It looks to me like your surgery was only 12 days ago on 12/27?  I had drains until the 14th day. The amount of fluid you are putting out shows that your body is still trying to recover from this major surgery that you just had. Are you worried about losing your job or not getting paid or are you going stir crazy at home?I know how frustrating it is to let BC take over your life but  it really is too soon to go back to work unless you have a very sedate job. My surgeon told me 4-6 weeks and that 4 was the minimum. For me the first few weeks were a daze and were spent in a recliner chair and mostly getting up just for bathroom breaks. Please be careful and take it easy. You can really hinder your recovery and also cause lymphedema if you do too much too soon.

Gabe- I got lymphedema and I only had SN removed on each side. You definitely want to avoid needle sticks and blood pressure on the side nodes were removed from if you can. I had them removed from both and most of my post surgery checks were on the left side which is where I now have LE. I do have a sleeve. I don't think they will give you one unless you have it but I really recommend seeing a LE specialist for an evaluation. It is good to have a baseline measurement to compare to if you ever develop it down the road.

Cookie- glad everything is going well for you.

gabe2011 I had the numbness under the arm last year and it completely mystified me as I was not told they were removing nodes. When I found that out, it made sense. It was definitely more the source of the pain than the mastectomy itself. Pain meds as needed. I am using Tylenol for a toothache and an arm-shoulder strain I got when faceplanting in the effort to dash across a busy street, but the upstairs-downstairs incisions of the DIEP are not so bad at 3 weeks.

Keeping alert and directing people to the other arm for IV and blood pressure is going to be an ongoing challenge because now that the initial numbess is gone, I sometimes forget. They say LE can start at any time, even years after the surgery, so worth being prudent. This recent surgery, they put a big piece of tape the length of my arm on the old node side saying "no IV, blood pressure, injections this side" so that there would be no misunderstandings while I was asleep. 

eve, I am with everyone else saying that 6 and even 8 weeks is the norm for mastectomy sick leave. The drainage for me was 2-3 weeks for mastectomy last year and one week for the recent DIEP. It has to reduce to 20 or 30 mL on two consecutive days or they won't take it out. (The target level seems to vary by surgeon.) I was trying to loosen up and do light movements last time, but this time, I have been deliberately idle. Surgeons who say go ahead, stretch, move, are not the ones with a drain poking them. Last time, I was putting away dishes over my head three days after surgery. I could do it, sure, but I paid. Not this time. (I will get physio to catch up the range of motion.) But I imagine the drainage can also be provoked by irritations inside the body like TEs. Fortunately for me, I haven't had that.

While I was on the computer the same day as mastectomy and working "full time" hours throughout my recovery, I was ridiculously inefficient. The surgeon clearly said 6-8 weeks absence. I required 6 after lumpectomy and 8 after mastectomy to do the physical parts of my job that involved prolonged standing, prolonged talking, animated arm gesturing, carrying materials, and taking any interest in things other than my own physical condition. During the 6 weeks, I did correspondence and other writing, advising people, compiling information etc. and attended the occasional sit-down meeting after a few weeks. This time, with DIEP reconstruction, I was *in hospital* for almost a week. Mastectomy and especially reconstruction is much more physically demanding and the longer the surgery, the longer the fuzzy head from anaesthesia. Anyone who said it was a one-week recovery is out to lunch.

Eve, your comments about what your BS said about your staging spurred me to look into this more. How to determine the accurate size of a tumor for staging purposes is definitely a confusing topic. Whether the tumor size should be determined based on only the largest sample retrieved (whether from the biopsy/preliminary surgery or from the final surgery) or the combined size from all procedures isn't always clearly stated. It seems that one concern in combining the size of all tissue samples is that it can't always be determined if the cancer mass retrieved from all procedures was part of the same tumor. But certainly the objective is to base the staging on the total size of the largest single mass of cancer that was in the breast.   And generally the articles that discuss staging say that the information from both the biopsy (or previous surgeries) and the final surgery should be considered together. 

- Pathologic staging

• Uses information from the clinical staging supplemented or modified by information from surgery and the pathology report   www.cancerstaging.org/staging/PPTs/breastcase1.ppt 

Quite often, there are several tissue samples, biopsies, or surgical resections for one cancer. When staging a cancer, it is important to review all pathological reports for the clinical diagnosis, gross description of the specimen and postoperative diagnosis.  The gross description of the specimen should include the total size of the tumor.   http://training.seer.cancer.gov/staging/sources/pathologic.html

Biopsies and imaging studies give a close ballpark measurement of your tumor. But you need the actual tumor size in order to make the best treatment decisions. Your surgeon will use the information from previous tests as guidance when removing your tumor. After a lumpectomy or mastectomy, your excised breast tissue will be combined with your biopsy tissue, and a pathologist will examine the actual mass. The pathological measurement of your tumor is the gold standard for tumor size.   http://breastcancer.about.com/od/diagnosisdetails/f/tumor_sz_actual.htm

It will be really interesting to hear what your oncologist has to say about this.  

Gosh, I was a big baby after I got home from my BMX on December 5th. I never, ever got my pain under control in the hospital (refused to push the PCA containing morphine) and I hated to think I needed to take the narcotics around the clock, but I did.

Many ladies here - AND my awesome PS - told me that. So it was two Norco every six hours, around the clock. DH got up at 4 a.m. just to make sure I got my meds.

Some days all I did was lay in bed and cry. I was so happy for all the sisters who had come home from surgery and took just a Tylenol, but I felt like a failure because I wasn't one of them.

I could only sleep for maybe an hour or two at night, so of course, I had zero energy during the day.

I did try to get up and at least walk around the house, or in the back yard, so I wouldn't get blood clots.

Everyone was saying "Give it time!" and I was thinking "I already have!" I just hadn't given it enough time.

Last week, almost a month after surgery, I had my first set of fills (which is amazing in itself, as my TEs had felt like they were on fire inside my chest from the get-go) - and - incredibly - my first day without pain!

DH and I try to walk around the block, but I still shuffle and lose my balance. It's exhausting. We're up to two times around, though, and we plan to keep increasing it.

Going back to work isn't an issue for me; I'm retired. But I know I would never have the energy to go back now, and maybe not even in another month. I think doctors tend to underestimate the time it takes to recover; it's usually the nurses that set you straight.

Beesie, In the past the final pathology report is what I've posted. I pretty much in the past only considered the final path report. I went to a emaging center where they aggressively biopsy out at least 2 C  usually all the calification areas. It seems as if the breast surgeons consider the staging by the last path report only...perhaps the oncologist consider both...especially since mine came from the same tumor. Since I've never really had an oncologist it will be of interest to how she stages me. I could go from a 1a to 2?

Fitzdc I understand the drain issue. One of mine came out after two weeks and still have one in. PS told me I need to be at less than 30 ml over 24 hr period. The side where 5 nodes taken out is taking longer. can't wait for drains to come out, and can't wait to sleep on my side and stomached again someday. You sure need patience with this process. I just look at others 2-3 years down the road and see how well they are doing and look so good and I know we will all get there too!

Eve- that is good that you are the boss. Just listen to your body and if you feel like it is too much then take some more time. As many have said; there are so many complications that can arise if you are not careful. I definitely have feeling on the skin. My BMX was last June and for a long time it was a sore, prickly kind of feeling but it has gotten better with time.

Fitzdc- I can't imagine having a drain for that long;mine was 2 weeks and that was long enough!!

Beesie, what is ridiculous about staging is that there are so many variables in staging that can make a difference in treatment plans. For example, last March with low grade 1, IDC mucinous, 1 C I was staged 1. It was a very slow and favorable type of cancer. The cancer I had last March rarely goes into the nodes or mets. This time, my bs stage me the same, except this time I'm IDC 2 C by 1.8 C grade 3 with the HER2+++(only surgical pathology). Both are stage 1a, but very different cancers.

The lumpectomy alone with wide margins was enough for the grade 1 stage 1 cancer. But, the recent dx due to idc, grade 3 and the her2+++ factor "standard care" is chemo/herceptin/tamoxifen.

Same grade 1a, but one is not so serious and the other one serious?

The very first dx when I was told I was stage 0, I did not take it seriously because I was told they got it all and it was noninvasive. I was given the impression that the odds were I would not have a recurrence. The first thing my bc surgeon said the other day, good news it's only stage 1 and no mets. The mx got it all. This is what I want to hear...stage 1a and no need to worry about recurrence.

I struggle with this because I am told the cancer I have isn't really that serious. It's good news I have stage 1 cancer. It's no different news than the last stage 1 cancer i had last March. I shouldn't worry, should I?

I was also told by my oncologist that 75% of stage 1 after surgery will not have a recurrence. And, 10 of the 25% left even with treatment will have a recurrence anyway. Also, I told that 1% of those who have a mx will have a local recurrence. So, the odds are stage 1 with the mx I won't have a recurrence.

Of course we both know that my luck hasn't been the best. It was a very difficult decision to do the mx, but I hoped it would be the treatment to finally rid me of recurrences. So yes, grade 1a gives me hope that I might not need to do more than surgery. And yes, I didn't take it seriously the first time around because it was grade 0. That first grade 0 because it was grade 3, and second time around multifocal grade 3 also grade 0 should be a higher grade than 0. I am now convinced that even DCIS higher grade and multifocal will recur if it's not all removed...just don't know when. And for me although margins seemed clean the first time around, they weren't. That's why rads and if you aren't comfortable with rads then mx is the best way to go. If I knew what I know now, the first time around with grade 3 I should have done the mx.

My opinion, they should take more into consideration in staging as not to give false hope to women that have the HER2+++ and if its higher grade or multifocal by lumping them into a lower grade based on just being idc.

sigh...my updated diagnosis shows my mixed emotions after my pathology came back.  Although it is smaller than they initially thought (2.1 cm compared to 3.7) the grade increased to 3, one positive node and a total of 20 taken.  My onc said because of my age, the 3.7cm and a grade 2 that I would need chemo so I've been preparing for that even before surgery.  Although I'm very happy it is smaller, it is the one positive node and 20, TWENTY that were taken that is freaking me out.  I had hoped to just heal until my next onc apt on the 18th and put this out of my mind.  I have to admit I've been reasonably successful but usually that means staying out of the forums for awhile otherwise I get obsessed and start getting ahead of myself with the diagnosis and treatment (but I do kind of miss you guys and want to hear how you are healing).

 I'm very happy for all of you with the positive patholgy reports and happy to hear that most of you are doing well!  Everything ahead is doable, one thing at a time

onc appt last Friday went well. she's ordering oncotype test hopefully on both cancers, but said insurance may only pay for one...  if oncotype comes back low-no chemo! she is "suggesting" Tamoxifen, but I have a history of blod clots in my legs and a family history of depression and strokes, so we may look at an alternative

Glad to hear so many of you are healing and feeling better, my caring thoughts to those who are having a more difficult time.