DX November 2014, An Introduction
Hello Everyone! My name is Joy. As suggested by Bride in another thread, I thought I would take a moment to introduce my self. I discovered my symptoms while on vacation with my family at Walt Disney World. We were visiting my daughter who was in the Disney College Program and having a dream vacation. It was my 21 year old son, my husband, my 23 year old daughter and myself. We had not all been together since my daughter was a senior in hs, and the trip was everything I hoped in would be. The day we were flying home I was showering and noticed that my left breast was swollen, the nipple was gone and it was red. It seemed to have happened literally overnight. We flew home and I called my doctor and requested an appointment for the next day. Of course I visited Dr. Google that night and convinced myself it was IBC. I had every symptom. Classic, textbook. My doctor sent me for an immediate Mam/US. That followed with a biopsy. With in a week a week I was not surprised to get a call that it was cancer. Invasive Ductal Carcinoma. Wow, what a relief I thought! I read all of the (old) information that came up in Google and it sounded like the odds with IBC were grim. From there I saw a general surgeon recommended by my PC doctor. She wrote down the word "Inflammatory" and asked if I had read anything about IBC. I said "yes, and I was happy that I did not have it." She never corrected me and was evasive. When I asked if my diagnosis was IBC she said yes. I was crushed. On to the oncologist. He seemed nice, but when I asked about IBC he asked me what that was. I knew that I needed to do something else. I called the University of Michigan Cancer Center, which is a leading researcher in IBC. In the week leading up to UM appointment, I continued with the testing that the local surgeon prescribed, PET scan, MRI, CAT scan, lymph node biopsy and had my port placed. While at UofM, my case was reviewed by the tumor board, I was examined by the Oncologist and Breast Surgeon assigned to my case and was presented their treatment plan. It was immediately apparent to my husband and myself that I should have my treatment at UofM. I scheduled my firstt treatment for the next week.
My treatment plan is as follows: 4 AC treatments, every 2 weeks. 12 Taxol treatments every week with the addition of Herceptin and Perjeta every 3 weeks, Herceptin for 12 months total. I will then have mastectomy (left side) followed by 8 weeks of radiation 6 days a week. Reconstruction will be down the road after radiation.
It has been an absolute whirl wind. I am having my 3rd AC treatment this week. I have tolerated the treatments pretty well with limited side effects. I will write more about the mental struggles and my experiences, but I just wanted to introduce myself to the group of wonder women here. For newbys my #1 piece of advice would be to get a 2nd or even 3rd opinion regarding your diagnosis and treatment. Don't stop until you are comfortable with your doctors and treatment plan. You really need to advocate for yourself and have a support system that does the same.
Thanks for listening! Joy
Comments
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Joy,
Glad you got to the bottom quickly of diagnosis. Sorry that it's IBC. I also have IBC, IDC & bone mets from the start in 6/09. Treatment is usually straight forward for IBC, chemo, rads & radiation. There are many living many more years than 2 with IBC and many more doctors are aware of it.
WIsh you the best with treatments & hope you get stable soon.
Hugs,
Terri
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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
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Thanks Bride.
Terri
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Thanks for the welcome! I am off tomorrow for my 3rd round of A/C chemo. I makes me happy as the treatments tick off that I am getting closer to getting my health back.
Hugs to all!
Joy
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Joy,
From your treatment plan, it sounds like you're triple positive, yes? Have you been staged yet (IIIB or IIIC)?
Although you're no doubt doing this, I'll repeat what I was told just over a year ago when I was DXed. Get folder -- I use a multiple pocket pastic folder -- and save every piece of paper you get. Your team should provide you with copies of all tests, labs, etc. In one section I've got my labs, one has all breast imagery and pathology reports, one has my cardiac echos (because Herceptin can do things to one's heart, I have an echo every 12 weeks), one has misc scans -- PET scans, bone scans, etc., one has my appointments because they also list my meds and current vitals, and one had my rad info but now has my PT info. I finally broke and got a second folder for my EOBs. I always carry a small notebook so I can write down questions. And I always drag my caregiver with me because she's calm when I'm not.
While I know you're obviouly wise enough to have gotten yourself the best care, don't forget that you're the most important part of the whole thing. For example, had I not told my RO that my SO wanted to do a reconstruction, I wouldn't have known that could be problematic.
Having said all that, here's my story in brief. Two days before Thanksgiving of 2013, the breast center in my very small town gave me a tentative DX of IBC. There was no one in my town who had treated a case of IBC in the previous decade. So I wangled my way into Emory, the closest NCI designated cancer center. By Christmas, I had been run through every test known, met with my RO, SO, and MO, had a port inserted and, on 12/27/13, I had my first infusion. There were lots of ups and downs, both physical and emotional. But, now, having completed all but my continuous infusions of Herceptin and starting on an AI, I have NED. IBC kicked my butt and I'm in PT to fight its effects. But I kicked IBCs butt right back -- and, thus far, I've won.
I can honestly say that there are good outcomes and hope your's will be as good as mine.
Also, this forum has been a huge source of support and information that I'm still learning from.
Medical, emotional, any issue can be addressed here. Just when I thought I had settled everything, I've got new questions about how long I should stay on Herceptin. Please don't think your only role is to welcome newbies, your needs are just as important.
bride
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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.
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Joy,
Just checking in to see how you're doing???
bride
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Hi! Checking in. I had my last AC on 11/27 (yay!). I will start my Taxol weekly for 12 weeks with Herceptin an Perjeta starting with first Taxol and continuing every 3 weeks. I am glad to finish AC. The effects seem to been cumulative and and have become worse each round (fatigue, dizziness, sore mouth, throat etc....). I am a bit nervous about the next round because I hear of allergies. I don't want anything to derail my treatment train! Onward! I am looking at mastectomy around the end of May. I am starting to read about IBC and mastectomy to know what I am in for. One thing I wonder about is if they take skin..what do they cover with? How is recovery? All in all, I am doing well. Trying to stay busy at home. I just filed my disability claim because I used sick time, vacation, holiday and then work from home days to transition my project at work. My work requires me to file for SSDI if I will be off six months or more, so I am in process of doing the online application. Thanks for asking about me my sisters. Healing thoughts for us all!
Joy
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Bon, Thanks for the great information regarding the mastectomy. I was really curious about the removal of skin. I have 12 weeks of Taxol with Herceptin and Perjeta before my surgery. I am being told surgery will be 3 weeks after last Taxol, so I am looking at late May. I will meet with my surgeon again during this next round of chemo. He already told me that any type of reconstruction will be far down the line, so I am not even thinking about that right now. Thanks for explaining about the range of motion as a necessity for radiation. I will work hard on that. I know I will be on a 6 day a week regimen for radiation. Thanks for all the helpful information. It is so nice to hear your experience!
Joy
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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
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Joy,
Oops, I forgot one thing. For over 5 years, I helped people with SSDI stuff. If you've any questions as to how you or your docs should speak SSA jargon, just PM me and I'll try to get you an answer.
bri
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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.
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I developed Gall Bladder Sludge while on Taxol. It showed up on the CT that was done on the day of last Taxol. I was starting rads the next week and Rads Dr wanted a new CT before starting. I was told that it's not unusual as Chemo has killed so many cells and they 'congregate' in the gall bladder. Either it will 'go away' ( can't remember the right word) or will form stones. Later CT showed that had formed stones in my case but I've never had any problems with them - just show up on scans.
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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
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