DX November 2014, An Introduction

Joy,

Just a quick note to thank you for sharing your information. I'll write more ASAP, but have to rush to PT.

I know it's a whirlwind, but you can handle it -- everything you've written suggests that you've the courage and strength to stay on top of things.

More later,

bride

Bon...your story made me tearful.  I'm SO GLAD you persisted. 

I was finally given a diagnosis of "it doesn't quite meet criteria but it has IBC characteristics."  The pink spot of dermal lymphatic invasion was about 3 inches across, and it was an umbrella over a small lump of IDC that was very close to the skin surface. 

I saw the red spot after I got out of the shower one Friday morning, and I got a magnifying mirror to look carefully.  When I saw what I knew was peau d'orange texture, I immediately thought IBC.  I had a business meeting in another city that day and called my gyno on the way.  She wanted me too turn around so she could have a look, but I said Monday's soon enough.  When Monday rolled around the pink spot was not longer warm and red from the shower and she couldn't see anything, and she said, what's IBC?  But then she said something that probably saved my life...you saw something so we're going to chase it down.  She is a firm believer in women knowing their bodies better than anyone.

When the mammo/ultrasound/MRI showed the small lump of IDC and no other signs of IBC, everyone focused on the IDC.  No one said anything about the red spot until I met my MO, about a month later, after the lumpectomy, that had revealed surprising lymph node involvement.  She took one look at the red spot and said, let's get a biopsy of that.   

This is the reason that I recommend to anyone with a newly-diagnosed breast cancer to seek out the opinion of a medical oncologist before any surgery, if possible.  If I'd opted for a mastectomy instead of a lumpectomy, we would have never known about the red spot and I might not have received the treatment I needed.

Joy,

I'm glad you're doing so well thus far. Since I had just about every possible SE from Taxotere and was found to be allergic to it, I understand your concern. I'd remind you that very few of us respond as badly as I did. And even though I believed I'd never make it through chemo, I did. If Taxotere was ever suggested to me as my best option, I'd use it. Some stuff which might help. If you're drinking a lot more water than you were (I was told a minimum of 3 liters), watch your sodium levels. If I had to do it over again, I'd start out with Gatorade or its equivalent. Watch your potassium as well. It's important for muscle stability.

Flexibility is important and so is walking. Walk as much as you can.

This is strange but true: wearing shoes, more specifically, running shoes whenever you're not in bed decreases your chances of getting PN and minimizes it if you do get it. Strangely, gloves don't have any effect on PN.

Let your RO know as soon as you can about what skin expanders you'll have. Skin expanders can make rads more difficult. I used Miaderm during my rads and had no skin issues. Course, a lot of rad problems are related more to skin type and genetics -- I was chagrined when I had thought my religious use of Miaderm had saved from rad induced skin issues and was feeling quite smug till my RO said, "so you've got good genes for this.

And, although this way too soon, I'd recommend that after you finish your rads, you meet with a lymphedema therapist. My RO thinks everyone should do this.

Please keep checking in.

bride

We are all so unique that there is no one way that all will react/experience along this journey called 'life'.

My TX plan was different than most have. I did 4 DD A/C neoadjuvant. 2 weeks later had mod rad UMX. 3 weeks after UNX started 12 weekly Taxol. A week after last Taxol started 25 rads. A week after starting Taxol, I started Femara (it was not yet available in generic letrozole then).

From what I have read from many, it seems that if A/C is 'nasty' then Taxol will be easier and visa versa. For me A/C was not bad - did not slow me down at all. Taxol was nasty though - I was completely and utterly exhausted on it. I did start feeling better a week after the end and continued to feel better all through rads.

On my first Taxol, I did have a bit of a reaction. My BP dropped drastically but some more IV benadryl and slowing down the infusion took care of it and never had any other issues. I was always COLD on it with temp always being between 94 and 96 so I got one of the glass enclosed cubicles with a bed in it and with it's own thermostat and a lot of warmed blankets piled on. I had been given oral benadryl before A/C with no reaction but with Taxol it was IV. I would go 'nighty-night' within seconds of it starting but I would wake up about 20 minutes before the end of infusion with no lingering effects. As fast as I would go to sleep, I would wake up with no lingering effects. 1/2 way through Taxol, my K (potassium) levels plummeted. Had to go on mega doses of K to keep it in the 'normal' range - I still, after 5 yrs, fight low K levels without supplementing a lot.

I did not have recon so know nothing about it personally - I was told recon could not be considered for at least a year and when that year passed, I had decided no way was I going to do any unnecessary surgery and possibly developed issues that might limit my very active life. My rads Dr said that he wished no one had recon before rads as it complicates TX and can effect the recon. I used the creams my rad Dr gave me - had no skin issues during rads. After was another story. The morning after last rad the entire irradiated area was open and weeping. I have 'good' scars to prove it. I never developed any infection and what finally dried/healed it after 3 months was Domoboro soaks - wish had started them a lot sooner. But it's done and past and I'm doing great so that's what matters to me.

UMX (for me) was not what I expected from reading posts of others. I had read that ROM would be so limited that button shirts had to be worn - wrong. While it was a slight bit less, when I left the hospital the next day I wore my 'winter uniform' - a turtle neck and pull on sweatshirt (whatbInhad worn in) and not the button up shirt I had with me. To me it mattered to walk out as I had walked in. I also did walk out on my own - hospital regs said an RN had to walk with me and have a wheelchair 'just in case'. Drains - I had 2. The first came out at 2 weeks with no issues. The second was still putting out a lot at 4 weeks, surgeon thought that perhaps it was causing irritation so removed it. Unfortunately, a very large seroma developed. It was still showing up in CT scan at 6cm when I started rads after 12 Taxol.

Do not be surprised if you developed Gall Bladder Sludge ( yes 'sludge' is a medical term) which may or may not go on to be gall stones.

Get a referral to a LymphEdema Therapist before surgery so that a baseline can be established in case you do developed LE. Unfortunately, many Drs are not very knowledgeable about LE.

I had gallbladder problems as soon as I started chemo. They found a 2cm gall stone and put me on panthoprazole, which I take daily to keep the acid reflux and pain away.

Terri