What would you do differently?

[Melissa]

Well............I second guessed eveything, and I do mean everything. But in the end, I need to believe and hope, I have done everyting possible to keep this hideous disease from coming back. I need this for my sanity.

[AlaskaAngel]

So many things...

Pink Girl is right about weight gain. I would have given very serious consideration to refusing the use of steroids with chemo because they can be a reason for weight gain, and for the first time in my life I gained 28 pounds with treatment. I've seen a number of posts by people who did refuse it and got through it just fine without it. (But I am not sure that would apply to the taxanes.) I would have exercised... if I could have, that is... like Christine MH-UK, I spent 6 treatments of CAF going between being too sick to exercise, or else at work as someone who is self-employed. Losing weight is not the same as it was prior to treatment, and that is a huge understatement.

I had the first treatment without a port and immediately requested one, as my livelihood depended so heavily upon having to use my arms and hands. I've still got it, since I never had trastuzumab (yet) and have draws anyway every 4 months for the CA-125 to watch for ovarian cancer.

Since I was diagnosed as stage I before Herceptin was considered a success I don't know that I would have tried to get it -- but were I diagnosed now, knowing the down side of CAF and tamoxifen, I would refuse chemo and find an onc willing to provide trastuzumab to me without chemo.

And Jean's post really rang true for me. Don't assume the docs know more than you do. I have learned that even the best docs I have had truly did not, over and over. I sympathize, Jean, because even though I too inquired, my onc failed to tell me about relevant clinical trials also.

I think the biggest difference for me would be that I would put a LOT more weight on the importance of evaluating the treatments, and much less confidence in the personality of the medical provider.

AlaskaAngel

[harrie]

I wish someone had directed me to this site at the time I was dx. I did not run across it until into my 2nd round of chemo and I could have really used the information and support a lot.

I do not regret taking the steroids before, during and right after chemo tx. For me it was a good precautionary measure to take against possible neuropathy problems.

[Patb]

Looking back I would have ask for a full body scan
as a base line even though that is not protocol for
no nodes? Now when I have a test we can't tell
if its new or was there all along as with the pulmonary
nodule. Now I have to be tested every three to four
months to check on that.
patb

[Louise O'Brien]

Alaska Angel - I can understand why you feel you'd prefer just Herceptin as opposed to chemo and Herceptin.

I went through that when I was first diagnosed and was very upset to learn I had to go through chemo in order to get Herceptin. It was chemo - or no Herceptin and I knew that was the drug I needed.

I was early stage, no node involvement , clean margins after surgery but one of the doctors said something that made it almost tolerable. The what if... what if a small undetectable cell had escaped and was lurking somewhere else.... chemo was added insurance.

So I went through it all and I don't regret it. If I had the choice again today - I'd still choose chemo with Herceptin.

And I learned another thing on my very last appointment when Herceptin was finally finished - that, according to doctors, I was just on the borderline - between no treatment at all after surgery and the full meal deal.

While I was presented with the choice as to whether or not to take chemo, I never realized I was considered such a borderline case.

But even if I knew that, I'd still make the choice for full treatment.

The steroids? I don't regret those either because I think it kept the nausea at bay. Our protocol was to take the pills two days prior to chemo and one day after. No longer. I moved a lot of furniture during that time.

Now - for the weight gain. We shouldn't beat ourselves up too much - remember how awful most foods used to taste? It was a miracle to want to eat anything and for some reason deserts and anything sweet was more tolerable. I don't regret that.

I gained about 10 pounds and some of it has come off. I've just joined a gym and plan to get rid of the rest of it - some motivation though. The plastic surgeon doing my Diep flap would like me to lose a bit more - but not too much.

[AlaskaAngel]

I really hope that what we are trying to do here is share information, and that the debate is (and stays) healthy and not divisive.

I should explain that as a stage I, I would refuse the chemo not based on the nausea and vomiting (which I had anyway regardless of the steroids, and which Zofran, compazine, and lorazepam did more to help with), but rather because of the permanent damage the chemo did to the immune system. I don't mean just the possibility of leukemias down the road 10 or 15 years, or the combination of added risk for that with radiation, but the damage upon completion of chemotherapy. My blood counts have never normalized, and were excellent prior to chemotherapy. I now have chronic anemia. Even the smallest wound takes ages to heal, whereas that was not the case prior to chemotherapy. That inability to heal increases my vulnerability to disease.

But there is a deeper issue involved that is not obvious, especially to physicians since they are not the ones who are dealing daily personally with the damages from therapies.

For one, the ability to desire and perform intercourse has been significantly lessened or lost. Doctors uniformly either avoid telling patients this in advance, or they minimize it after the fact instead of dealing with it honestly. It is much easier for them to stick to advising patients to "use more lubricant", or "try dilators for the vagina" or "it now can take more work to achieve intercourse than it did before".... than it is for them to understand that those things are less effective than they think they are. It is very easy to justify sacrificing intimacy to save lives, without putting any real effort into better answers for dealing with the problems created by therapy.

Chemotherapy changed my metabolism drastically. It doesn't happen to everyone, since some gain weight and some lose weight with chemo. I seriously think physicians should reevaluate the need for steroids and the amount of steroids they prescribe. While they may act to help deal with the uncomfortable effects of chemotherapy, they also act over time with repeat doses to cause muscle breakdown. With repeated therapy treatments, one has much less muscle tone TO exercise effectively, and in addition, has to try to exercise for the first time with all the extra weight piled on, AND has a much slower metabolism to work with in taking the weight off.

Again, it is easy for the doctor. He just turns his back and says "eat less, exercise more", and goes on down the road to save another life. But what I think is becoming pathetically obvious is that by encouraging weight gain with the steroids in the first place, they are pretty oblivious to the result. In effect, through the added weight gain they are actively predisposing patients to greater risk for recurrence from the extra fat gained from treatment itself.

http://jco.ascopubs.org/cgi/content/abstract/26/24/3958

"Compared with women who were inactive both before and after diagnosis, women who increased physical activity after diagnosis had a 45% lower risk of death (HR = 0.55; 95% CI, 0.22 to 1.38), and women who decreased physical activity after diagnosis had a four-fold greater risk of death (HR = 3.95; 95% CI, 1.45 to 10.50). "

http://jco.ascopubs.org/cgi/content/abstract/26/6/907

"The exercise group also experienced a significant decrease in hip measurements, with no change in weight or body composition. "

I believe they can and should do more to help so many of us to avoid the weight gain in the first place.

AlaskaAngel

Hi all;
One thing I'm still grateful for: I traveled to a big city breast center for my surgery and had a surgeon who specializes in breast surgery. I still travel for my checkups and don't at all mind the expense or inconvenience. It has been worth it in oh so many ways.
Linda

[Louise O'Brien]

Alaska Angel:
I truly hope my comments weren't interpreted as challenging or divisive - that wasn't my intent.

I didn't explain myself properly I'm afraid. What I meant to say was - in Canada - we have no choice when it comes to chemo and Herceptin. If you want to take Herceptin which is provided free through our government health care system, you have to go through chemo. Can't have one without the other. That lack of choice was something that upset me a great deal at the time.

[AlaskaAngel]

Not at all, Louise! The topic just can get very sensitive and I too don't mean to offend anyone, and especially not those whose diagnosis is much more complicated than that of a stage I node negative HR+ like me. Again, since the vast majority of those diagnosed in the US at this time are diagnosed with early stage bc, I try a little harder than I would otherwise to discuss the options from that point of view.

Thanks, neighbor, for such courtesy,

AlaskaAngel

[Debra]

As far as treatment goes, I don't believe I would change anything. I was aggressive all the way. Both breasts removed and a hysterectomy at age 40. I guess I decided to go gungho with everything so I have no regrets if this bugger comes back and no "what ifs"; just a personal choice maybe not the best but it worked for me.
I know the one thing I wouldn't have done and that is spend $900.00 on a human hair wig!!! It was not worth it. My $40.00 synthetic one was much cuter, more comfortable and looked more real! I will never do that again. The synthetics out there look great and don't need to be styled. Save your money and go synthetic would be my advice.
I guess I feel comfortable with my treatment I received. I am still scared as heck this thing will come back as everyone else knows that feeling but nothing will change that.

[Alice]

Just bumping this back up. I think it canhelp a lot of the newcommers.

[DanaRT]

I would have not wasted time and (a lot) money trying to find the perfect wig. I wore it once and felt silly in it. I preferred plain ball caps from Lands' End.

Because of this thread I am going to finally insist on a CT scan so I have a baseline.

There are moments that I wish I would have had a mastectomy. At times I think that I feel a local recurrence...it's distracting and disturbing.

Dana

[MJo]

If I had to do it again, I would not be given adriamycin, which caused me so much trouble, because treatment has changed. That's a wonderful thing.

I would take into account that I have seasonal affective disorder (SAD). I started treatment in late December without antidepressants or anti-anxiety meds. The worst time of year for someone with SAD. No wonder I thought I was going crazy. Thank God my Internist started me on Lexapro and gave me Xanax for the worst anxiety.

I would stay out of supermarkets and drugstores during chemo. I would beg friends/family to shop for me. Too many cold viruses-flu bugs floating around.

Otherwise, I would be just as aggressive with treatment. I also gained weight but have managed to lose it. I still would live on ice cream and grilled cheese, if that's what I craved during chemo.

[Jackie07]

I would have insisted on having bilateral mastectomy in 2003 and not get talked out of it by the surgeon. She's a good doctor, according to many; she just didn't understand how cancer-prone I am and how vicious Her-2 breast cancer can be!

[fauxgypsy]

I think this is a great discussion. I am going to bump it up.

I have several things that I would have done differently.

I would choose my doctors much more carefully.

I would not have let fear rush me. My surgeon told me that the lump had grown between the mammogram and the lumpectomy and urged me to act quickly. He did his best to scare me.

When my first oncologist discounted my doubts and said that we didn't need a biopsy of my liver, I would have gotten a second opinion.

I would have had a breast specialist do my mastectomy and not a general surgeon.

I would have filed for disability immediately instead of being so damned independent. It would've given me time to heal instead of worrying so much about my business.

I hope I have learned from this. I hope this helps someone. Don't let fear affect your choices.

Leslie

Leslie

[Rich66]

Can someone point me to SS disability links for cancer?

[Joe]

Rich,

If the person is considered Stage IV then disability is automatic. Heres some advice, call your congressmen for assistance in filing. They have staffs just for that purpose and can cut corners.

Regards
Joe

[hutchibk]

You might also try calling Lance Armstrong Foundation/LIVESTRONG SurvivorCare toll-free, 866.673.7205, Monday through Friday from 9:00 a.m. to 5:00 p.m. EST to speak to a case manager. They should have helpful hints and info about SS disability and cancer patients.

[hutchibk]

What I would do differently is to have learned a little bit more about my dx in the beginning, but I was so intimidated for the first 6 months. I thought I learned all I needed to know, but in retrospect I was so naive. I would have fought harder to find a way to get into the Herceptin phase 3 trial (I wasn't accepted outright because we saw something on my liver in scans that turned out to only be a hemangioma).

I am thrilled, though, that I did not get radiation at the outset or at all to the breast area, and would not change that decision for anything. I did do my research about that early on and am very happy with that decision.

[adrien]

*that I'd had a mastectomy the first time I ws diagnosed—not a lumpectomy
*that I'd pushed for a biopsy when the radiologist said the spots were benign 5 yrs after first diagnosis
*that I'd had the skin mets surgically removed immediately
*that I'd had a CT scan earlier when markers rose (found mets in lungs and liver and groin eventually)
I wish...