My (perhaps controversial) thoughts as a "newbie" to CA.

I actually purchased a product called pink pockets which attached with adhesive to the inside of your shirt. I also got a lanyard to hang the drain on when I showered.

I love my recliner for after any type of surgery. Once you are tucked in with pillows and whatnot, you can't really toss around and accidentally roll into some position that will hurt, which I think helps you relax and sleep better.

Something about general anesthesia that you don't hear mentioned often (and about which I wasn't warned): once you are under, they often administer a powerful muscle relaxant called succinylcholine (“scoline" in med-slang). But the way it works is that first it causes all your upper body muscles to tense up violently for a second before it completely relaxes them. When you first awaken, you won't notice any effects from it and probably still won't the next morning. But by evening of the first full day post-op (if you were given scoline) you may notice your upper body muscles--upper abs, ribs, pecs, delts, even neck and biceps--begin to feel stiff and sore. By two days post-op, you may feel as if the night before, you'd gone to the gym and used every Nautilus machine in the place at full resistance. It hurt like hell to breathe deeply and I couldn't turn over to sleep on my non-opersted side, nor even get up out of bed without screaming. As I wasn't warned, I was terrified that something was terribly wrong--so after I took my temp and reassured myself I wasn't coming down with anything, I Googled “post-op upper-body soreness" and found entries for “scoline syndrome." I messaged my bs' nurse and she replied that's exactly what I was going through. It peaks about night #2 or 3 and then fades much faster than it came on. So don't freak out if you feel like that when you think that your post-op pain is supposed to subside....it will in a few days. But there's not much OTC you can do about it in the interim--they prefer you not take NSAIDs for at least three days after surgery, lest you develop bleeding. Ask your surgeon, her or her nurse, or the anesthesiologist before you “go under" for a scrip for a generic muscle relaxant (diazepam worked for me).

BTW, I had some extra diazepam and a couple of Norco left over from a previous injury. Good thing, as I wasn't even given a scrip for a painkiller--in fact, after the initial bolus of Fentanyl in my I.V. as I came too, all they gave me were a couple of regular--not extra-strength--Tylenol! Needed one Norco the first night to get to sleep, and half a diazepam each of the next two nights.

Dear Newbie in CA: I was diagnosed with Stage 2 breast cancer at the age of 68.. Had a lumpectomy and they removed two ducts. One had cancer cells. Much to the disappointment of my doctors, I flat out refused chemo.

Family members with breast cancer died after five years even with both chemo and radiation. I informed my surgeon and an onocologist that family members died even though they took chemo. She then shared the following with me. One third of patients who take chemo receive NO benefit from the chemo. Since that seems to be the history in my family, I felt even better about refusing it.

I did take the radiation, which cause me so many medical problems - one would think I WAS on chemo. It took six months for the major symptoms to dissipate. I am still dealing with intense fatigue and memory loss.

I currentlyhave blood work done every six months to check my cancer markers. It has been 18 months and all is good. Mu pet SCAN came out negative. They found no clusters of cancer cells in my body. They also put us on a chemo pill for 5 years after our treatments. Some of the pills have up to 35 potential side effects.The side effects are what I experienced with the radiation. My Ono doc said I was so sick she would not even try to convince me to take them. I had refused them along with the chemo at the beginning of my diagnosis anyway. So don't feel perplexed or as if you are making bad decisions.

Also my Ono doc said many insurance companies have stopped paying for chemo because the the percentage of patients that it does not benefit, along with the outrageous cost of the treatment. I am meeting more women diagnosed with breast cancer who are also passing on the chemo. Hope my story helped you some. Big hugs and an uneventual journey for you.

Listing age is so basic to the analysis of each person's situation in so many ways. It cuts out a lot of the "noise" for those who are age-young or age-older. The massive amount of detailed analysis for each situation is so overwhelming at the time of D&D (diagnosis and decision), just for starters. At such a time it is especially difficult to "keep track" of the relative value of relevance of each factor when making comparisons with other patients.

Sexuality changes much more gradually with aging that isn't accelerated by chemo destruction of ovarian function and hormonal balance and natural immune response. Where I personally believe we all have missed the boat in terms of cancer prevention and detection is that medical science hasn't included the collection and creation of a factual database of lab data acquired for each of us throughout the life cycle, to be able to effectively "track, detect and manage" our endocrine and metabolic systems in particular. We do roughly track changes in weight, but we don't track them in direct relation to our hormonal balance. We get off track through a variety of hereditary changes, dietary changes, exercise changes, and even medication changes without any constant awareness or focus that it is happening until we show up with a disease. And even then, we don't have that background data to manage the problem. I think having that kind of information might provide a clearer picture for what influences such things as triple-negative bc, and for IBC, etc.

What stands out about that to me in particular as a strongly ER+/PR+ is that when I used genuine logic after treatment to try to deal with the runaway train of weight gain after completion of chemo, rads, and just less than 2 years of tamoxifen. To my way of thinking, the whole process was targeted at changing my hormonal status as a form of protection, so, ergo, I was hugely baffled that essentially no preliminary testing was done specifically at time of diagnosis of my endocrine system or my metabolic system, as the initial scientific step in keeping a clear picture of that invisible "part" of me -- especially when the cancer appears to be so hugely related to those systems. I was even more puzzled that there was no such testing done throughout treatment, either.... and none done following treatment. I still am floored that the ONE part of us that gets zero specialized medical evaluation is our hormonal system. Why wasn't there any evaluation by any specialist such as an endocrinologist at time of diagnosis, tx, and since then?

So I managed to get a referral to one. It was almost impossible to get any appointment with one in the major city of Seattle when I went to try to book an appointment. They are booked solid just dealing with diabetes, thyroid, pancreas diseases, etc. I did finally see one. I had been following the early info about using metformin with bc patients. The endocrinologist understood my questions and was willing to provide me with that medication as long as I monitored with testing. I don't use it steadily or at normal dose, and take a tiny dose only when I think I need it.

But I digress.... I just believe that logically that is where the boat left the dock and sank so many patients.

Where I am a bilateral mastectomy is a day surgery. I had to stay overnight because I have sleep apnea and do for all day surgeries. I had the surgery in the late morning and had to stay in recover 4 hours (again because of the apnea) and by 4pm changed my Facebook status to "rackless".

I only needed plain tylenol and by day 2 did not need that. I live alone and was fine alone. My sister did come from across country to assist but I basically just enjoyed being with her rather than needing her.

I did prop pillows but only because of discomfort and not pain.

I had a complication because one drain was not situated properly and that caused infection... and because of a hematoma but otherwise it was basically all just nuisance because of the drains...arranging showering without getting them wet.

I had 6 lymph nodes removed and did not develop lymphedema. I also never noticed any difference in either side. If I hadn't been told that the axillary dissection had taken place on the left I wouldn't have been able to tell. I also did not do any post op exercises (guilty) and have good range of motion.

Basically I feel it could be uneventful if you are lucky and I think that when it all does go smoothly people don't come to forums to talk about it. They seek out help and support when it is not going well most of the time.

I think the biggest factor for me was psychological. The death fear when told you have cancer is huge and fear of recurrence also makes having support like BCO essential.

Regarding age difference. When you are in your 60s especially late 60s you have probably already spent a bit of time wondering what would take you out and what the remaining years would look like. When you are diagnosed with cancer you think "Ah, so this is what will get me" and you adapt to that reality. In some ways it is nice to be able to appreciate each day and have a good look at your life and make the best of the rest of it.

I actually think I might last longer because of the cancer because I sought out integrative cancer centres when I couldn't have treatment (chemo complication) and now have a healthier lifestyle than before. I would probably have had a stroke or heart attack by now because of obesity and inertia. I am no longer on blood pressure or blood sugar medication. My A1c is normal for the first time in many years. My fatty liver has also cleared up. My blood work is finally all in the black.

If you are younger it is a different story. You haven't lived your life and it is jarring to think it might be taken from you before you have had a chance to finish your story. I can't relate to younger women with a cancer diagnosis and don't think I would handle it with as much grace as I have witnessed. The unfairness of it happening to young people (including 50 year olds) makes me angry whereas with older people I just find it to be "normal" in the way that getting old means bodies change and decline in some way.

Trill, I hope you are one for whom the ordeal will be without complications and that you sail through and keep writing and loving each day with your Pantaloon. Take care.

Janet2014

Although I'm certain that my reaction at time of dx is rather uncommon, I've never once felt death would be the consequence of cancer for me -- in part because there were so many women in my family who'd had it and did not die of it, and in part because I had work experience that had demonstrated to me that very few early stage patients recur, and in part because I have maintained a low-risk profile in regard to general health practices throughout my lifetime.

So for me, the impact was focused on suddenly having to choose something so toxic as chemo, with health care providers who essentially still don't have any established method of measuring one's lifetime general health practices that is applied as part of the risk analysis at time of treatment recommendations. In addition, as I pointed out to my BS during our most recent visit together, medical providers carefully ask about family history of cancers, but miss out on reality by never asking the logical next question... "How many of those who have had cancer in your family DIED of it?" as part of the process of estimating risk. Only one single person with bc died in my family -- back in the 1950's when it was diagnosed much too late to do anything for her.

I don't subscribe to the belief that chemo's primary action is to kill cancer cells, because it is the stem cells that are thought to be the key component for recurrence and it is my understanding that chemo doesn't work well on those cells (perhaps because stem cells are so able to become any kind of cell). It did a great job of wiping out new hair cells that I didn't particularly want to wipe out. And the mental image of chemo killing cancer cells is an effective one in convincing people to sign up for applying the biggest hammer they can find to their cancer.

As an ER+/PR+ the main result for me was metabolic. I believe that chemo simply acts to slow down the metabolism, which then includes slowing the metabolism of cancer cells, which then provides more time for them to undergo natural cell death. Perhaps that includes cancer stem cells. I still had an active sex life after chemo. It was the tamoxifen that put an end to that fun, within 2 weeks of starting to take it, and that never recovered for me. Back then, there was no forewarning about that provided to me.

I've never had trastuzumab, BTW, although I do support the use of trastuzumab for others. I believe it would be more effective without chemo (in order to make the most of one's natural immune responses and do the least damage to one's general health), as long as some other method is used in conjunction with it that will slow down one's metabolism permanently.

Trill,

Managing the drains at night is part of comfortable positioning in bed and stashing the drains in the pockets so you don't accidentally pull on them. You are getting some great advice (and humor). I have really enjoyed reading this thread. I am a cat lover as well.

“One gal was making her mandated eight-gore circle skirt out of dark brown wide-wale corduroy that you could smell across the room, her ambition raising a few eyebrows (none of the finished product's seams matched--from a distance it looked like a muddy winter field plowed up by drunks on motorcycles...)“

I just HAD to read that with a mouthful of cappuccino, didn’t I???!!!!

Disappointed, many of us are not doing chemo because the Oncotype Dx test tells us it will not be of benefit, and recommends hormonal treatment. Which brings me to ask, are those "chemo pills" that you mention taking for 5 years actually anti-estrogen meds?

I was able to figure out what Disappointed was referring to. For some the correct terminology is not as important as creating good relationship and compassionate exchange in a chat.... as long as what she is talking about is understood. Since I am not that quick I bet others figured it out as well. :-)