What would you do differently?
 

Becky’s post today about her rad onc got me thinking. If I had treatment to do over again, what would I change?

Of course, we would all change the results of the test that altered our lives forever, but that is not an option. My question is, after being told you had breast cancer, and knowing what you know now, what would you do differently? Hopefully some of the newbies can learn from our experiences.

Overall, I was extremely fortunate with my care. However, if I could go back in time, I would tweak things just a bit. For one, I would have made sure I had an onc who was a bc specialist. I absolutely love my onc, and it appears that she was right on target with my treatment plan, but she is a general onc and bc is not her passion. I want someone whose main focus is bc and is on top of the latest research and treatment options. On the plus side, I do appreciate my onc’s willingness to listen to my input and concerns. On the negative side, her breast exam is probably the worst one I have ever had. Fortunately, my surgeon and primary care physician give great breast exams so I feel I am covered. As much as I love my current onc I will probably end up switching by the end of the year.

Another thing I would change is, I would get a port at the beginning of treatment. I know that there are many of you that did not have a port, had the same treatment I did, with no permanent damage. For me, after the third AC treatment, my veins were shot. I finally got my port in time to start taxol and herceptin, but by then it was too late to save my veins. Now, trying to access a vein, even for a simple blood test, is like trying to find a needle in a haystack.

So, my question is, aside from not becoming a member of this club –

What would you do differently?

Gerri - What a good question!! I think this will give a lot of people information to consider in making decisions on their treatment. Hmmm...Let's see. First off, I wish I did not wait 2 months before I saw another doctor that told me the small, warm, scaly patch under my breast was "nothing." It was inflammatory breast cancer, and I was stage IV. I should have pushed for more aggressive testing at the time. I just wasn't thinking that I would have breast cancer at 36 (or probably ever). Second and very importantly, besides blood work every six months after achieving remission, I TOTALLY wish I had at least a yearly PET or CAT scan. I was totally floored when a simple cough turned out to be a reoccurance!! I KNOW that diagnostic testing would have caught the bc before it was in both my liver and the lungs. Maybe it wouldn't have been so aggressive??? Third - I would have stopped chemo (the second time) sooner than I did. For me, chemo induced leukemia (and don't think it can't happen to you - it happens more than you think). I desperately want a test that tells you how much is too much treatment. If there is a test telling you what chemo's will work, why isn't there a test that tells you HOW MUCH chemo to use. I've asked this question of several scientists. They just looked at me funny and didn't have an answer for me. Hopefully I've made someone think...

I know there are more things I would do differently, but there are some things I did right. I applied for Social Security Disability pretty much immediately. Now, not all people with breast cancer are approved immediately, but if you search the SSD site, it will tell you the qualifications. Stage III, IV and Inflammatory are pretty much qualified immediately. I did a lot of research for financial assistance (my bone marrow transplant alone was over half a million). Apply for everything!! The worst thing that can happen is that you get denied, but you may just be surprised at all the assistance that is available. Don't deny yourself pain or nausea medication and if your overwhelmed by this disease or the change in hormonal levels ask for anti-depression medication. After starting Tamoxafin, I became suicidal. I couldn't understand how it was that I worked so hard to beat this disease, and then I was having thoughts of killing myself. Find a support group! I thought I didn't need to sit around and dwell on cancer with a bunch of stangers, but I've learned so much and made some of the best friends a person could ever have! It really helps to have friends that UNDERSTAND.

I'm sure there is more, but I hope this helps someone. Thanks again for starting the thread....

THis is one simple thing that comes to mind which I learned around the time of my 4th round of chemo. Instead of drinking coffee before my tx which was first thing in the morning....drink plenty of water and if you need that coffee, drink it during tx. Reason....by the 4th tx or so it was getting very difficult to find that vein. I found by being fully hydrated, finding the vein was easier. Coffee is more like a diuretic and does not keep the body hydrated.

The only thing I would have done differently would be to have had a different surgeon. When I had my second mastectomy he left some breast tissue on the side near my armpit. I was not happy with that as the whole reason for the prophlatic mastectomy was to remove all the breast tissue. I constantly worry now about getting a recurrance in this area.

Walked more when I was on taxotere, exercised more after treatment
 

I would have walked more when I was on taxotere and exercised more after treatment since trial results suggest that this would have helped me avoid treatment-
related bone thinning. I had an anthracycline, FEC, but was too ill on that to do anything.

I would have paid better attention to my body, so I could have found out earlier. :(

Other than that, I had a complete resection (L) ax region in May, so nothing under my (L) arm anymore...no cancer anyway... Scans in Aug showed 2 Masses + lymph nodes in chest wall, and one possible small mass in plural space of (L) upper lobe of my lung. This is all new growth since May!!

I would have not done the surgery, and enjoyed my summer. Either way, I would have been on chemo now....which I started Tuesday.

Obviously I would have had a second opinion on rads just to be sure.

The number one thing though is I had 3 medical oncologists' opinions (all the same treatment). I ended up going to the onc that was closest to my home versus the ones I would have clicked with better. I even told my husband, I like the other 2 better but Dr. XXX will be fine. It ended up not being fine. And your onc and the relationship you have is very important and worth the drive (because this began my problems and issues and was the first doctor change I ever made (unless I moved and had to switch)). Second, I also would have gotten a port as my veins are shot. Third, if I had known - I would have tried to find an independent onc that would have given me Herceptin off label with the taxol (like the trial). I was lucky to be able to get it late but I got it without the chemo.

I also would have tried to walk more during Taxol as I had incredible leg and foot problems but it was winter and I wasn't a big exerciser then and wasn't in the mood.

Since switching oncs, I also switched my primary care and gyn (and now, probably rads onc because I can't envision if I showed up there what would happen. My husband says he would examine me and then recommend I find someone else anyway).

Main point - find your doctor soulmate via second opinions - ask around etc. Switching around is not something you want to do.

I would not taken the opinions of 3 of my 4 doctors, as gospel, on the pet scan results.
I would have insisted on getting a follow up bone scan much earlier, so I wouldn't have had to go for 7 months thinking I was Stage 4, when I was really Stage 3.

What a great thread!!!

I'm soaking it all in!!!!

Gerri great thread, thanks,

For the NEWBIES:

Get 2nd even 3rd opinions....very important.
I did this, my only regret is I wated too long to
move my a## out to UCLA and see Dr. Salmon.

NEVER take no for an answer....follow up on everything.
NEVER believe the dr. knows more than you.
Do your reserch and ask as many questions as it takes for you to feel confident. If the dr. is annoyed or does not have the time....fire him/or/her.

Remember two /three heads are better than one.
Don't be afraid to check over what you are being told.

Ask about Trials....that are going on in the facility and discover if you could fit into it.
While I was a perfect patient for a bone biopsey along with my lumpectomy (it was a trial going on at my center) my surgeon did not tell me about it and I would have certainly wanted to be part of it.

When an onc. advises about chemo treatments make
sure that choice is the best one for you.

Not something that I would have done differently, but a tip on a resource for the newly diagnosed:

After I had completed most of my treatment, I got a letter from my insurance company (Aetna) saying that there was a nurse case manager available to me that I could use for help with specialists, referrals, second opinions, etc. Great timing, but it may have been a new service they instituted. A friend of mine who was dx in 2002 was given a case manager early on by her insurer, and she said it was a tremendous help to her, having someone to assist with organizing a lot of things and keeping everything on track.

So, my suggestion is, check with your insurance company after you are dx, to see if a nurse case manager is available to you to assist with all the other appointments, etc., you will need down the road for your treatments.

Hopeful

I agree with the second opinion for every doctor. I had a second for surgery and med. onc but not rad. onc. I would also recommend going to a major cancer center for second opinions. I did not do that until my local recurrence. I went to UCSF and paid around $350 out of pocket but it was well worth it. I think most insurance plans will cover second opinions.

Tonya

Terrific question.
When I was originally diagnosed in the US with DCIS, I asked about being HER2+++, they said not to worry I was completely cured, my cancer wasn't outside the breast. but 5 years later it was. I would have insisted on Herceptin. but looking back is hard. looking forward is what we all must do.
thank goodness for this site.

What great advice. I did interview 2 oncologists. I clicked better with one but agreed with the treatment plan of the second so I called the first, explained my reasoning, and he agreed to follow my preferred plan. I start on Wednesday -TCH. I also pushed to get a port and, after 8 sticks!! for the MUGA I know I am right. Port goes in on Tuesday!!!. I encourage those even newer here than I am to read these posts - I was empowered by them and feel much more confident in my own opinions!!!

I would have gotten a second opinion before being rushed into everything the way i was.

I would not have changed any of my treatment. It all, somehow timing and everything, turned out for the best.

I would have changed a few things however:

* not bothering with the wig. it was an uncomfortable mess and it was just to make others more comfortable anyway. Took me two months to let it go and I was so much happier in a bandana!

* not worrying about what other people thought of my situation (pity be damned)

* reached out to support groups (like this one) sooner


I did think outside the box, or really my geographic area, for my reconstruction choice. We did not have any DIEP surgeons within 4 hours of us, but the drive was worth it.

Margerie, looking at photos I had the same thought the other day about the wigs. I wish I had not bothered. After a short time, I was just wearing scarves of some sort. Or nothing.

I wish I had understood my pathology report a little better. Some gals here on this board tried explaining it to me. But, in the end, I made the right decision for myself...