Stage II w/Lymph Node Involvement
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A1B1.. glad to hear the score is low... always good news.
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Hi ladies! I haven't been here in awhile -- I hope everyone is doing well!
Waving Hello to BDavis, Special K and others!!!
I finished rads on Dec. 14th and had horrible, horrible 2nd degree burns on my neck, under my arm and under my breast. They were huge, open pink flesh wounds and all the skin had come off. As of now, the dark skin is starting to cover the pink fleshy areas. I'm african-american and really shocked that I burned so badly -- but it was only towards the end (last 5 days).
I'm worried about my neck because the skin loss there was huge and I have a huge scar that's the size of an orange.
( I'm using Vitamin E and Cocoa Butter and I pray it becomes less noticable over time. Scarves are my friend right now.It's weird to be done with treatment; I didn't start the Arimidex right away; I wanted a break as I had such bad burns from RADS, but I will start it on Monday. I just can't deal with more side effects at this point. I'm also doing genetic BRCA testing on Monday. My left ovary has "something" on it (has blood and tissue in it) and I have a 2nd ultrasound on Feb. 7th to see if there are any changes. I've been having twinges of pain too. I pray it isn't cancer. :O(
My cancer journey was a nightmare -- so many side effects, complications, issues and now I have the physical scars of rads. I don't know if I will ever feel normal. I just started work full-time yesterday since JUNE!!!! It's weird to be back like the last 7 months didn't even happen.
Everyone else seems 'fine' and I just had such a hard time. It's hard to deal with that emotionally -- I broke down and had to go on medication after thanksgiving, as it hit me hard so many months later.
In any case, I pray everyone is well and for those just starting this journey, hang in there.
xoxo, Crystal
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Hi Crystal.... I am so sorry to hear about your burns... That was one of my fears from rads and one of the reasons I chose mastectomy instead of radiation (which was an option for me)... You have had a really rough road, with the chemo problems and now radiation. I will be thinking of you with the BRCA testing and ovary scare as well.. but it is probably nothing major... maybe a cyst?? 21012 will be better for sure... so sigh and try to have some treatment amnesia
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Hey B: How are you doing hon? Are you doing better from your surgery at this point?
The surgican onc who did my hysterectomy 2yrs ago said there is blood and tissue in my left ovary (something is hanging off of it). He said a cyst would be fluid-filled. He did say it "didn't look cancerous", but that's why I'm having the BRCA and having a follow-up ultrasound next month. I pray it's not cancer, I really do.
Yes, my treatment road has been horrific; no wonder I had a nervous breakdown.
I pray better days are head, but with my luck -- it doesn't seem like that will be the case. Not being a debbie-downer, just being truthful. I really hope you are doing good! 
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Hey Chrys23 - OMG I feel so bad for you with the rads burns! I am so sorry! Like bdavis - I was anxious about rads and glad they were not necessary for me. I so hope that your BRCA is negative. I waited 3 weeks for my results (I was tested on the day of diagnosis because I am adopted and they felt the results would drive surgery decision making) and it was nerve-wracking because it was at the beginning when everything is super-scary. I also had a hyst/ooph ten years ago and they found a 3cm pre-malignant mass in my right ovary that was undiagnosed. I had always had problems with cysts, so I was not that surprised, but they were! Hopefully, whatever is there is benign and just being a nuisance. All I can say is wear your scars like a badge of courage - you have had more than your share of trials and it is time for a good turn of events for you! Sending you a hug!
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Chrys23- Gentle hugs coming your way to soothe your rads skin burns. Don't feel badly about breaking down--- I do it frequently & often. Sometimes, when the "veil comes down" I am in public---that doesn't stop me from having a good hysterical cry (I carry a supply of tissues everywhere). With everything we have had to endure, I figure if anyone has a problem with my emotional meltdowns---it is their problem, I am doing what I need to do to greive this major "lifstyle" change. Keep yor chin up and wear your emotions proudly-- you have earned it.
Praying with you that there are better days ahead.
Keep us posted on your Armidex journey. We are all there with you.
bdavis- Intersting that you had an mx & no rads. I had BMX & opted for chemo & rads followed by 5 yeas of Armidex (6 out of 10 positive lymphnodes). They staged my bc as high risk stage II. I guess it is true that each of us has a tx plan to address our very unique BC
I am looking fowrad to treatment amnesia! Bring it on!
SpecialK- Thanks for sharing your hyst/oop story. Before my bc diagnosis I had a d&c & it was repeated when I had my BMX in Oct 2011. Some uterine a-typical cells so they recommend a complete hyst. They wanted to do it between chemo & rads but I opted for a D&C at that time when I have the TE exchange. I am going to wait until after my BC tx is complete, unless the D&C turns up with cancer cells----I just can't face more surgery now.
A big shout out for wearing our scars as badges of honor. We are all warriors in this battle and we will ovecome! I'm kicking butt & taking names.
Love, hugs & prayers to all
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TexasRose... I had one micromet, so for me it was either lump plus rads OR MX... All the doctors thought the MX was overkill.. but all agredd that if I had the MX I did not need the rads.
Crystal... I should add that I had a CT scan last summer (in preparation for my recon) and it showed something in my uterus... so I needed a D&C... oh that was fun... not a true D&C, but a scraping... anyway, it was nothing.
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Hi Chrys23- Sorry to hear of your complications. I, too felt that way many times...ie after dmx, the doc says "lymph nodes looked good...one week later, I find out I have not micromets but macromets in a couple lymphs" ..I could go on with the complications but you need to know that it all takes time to get back. Sometimes, and most of the time, its not back to normal but a new normal.
As for the ovary situation. i had the same thing. If its filled w/ blood etc, its called a complicated cyst. It can come and go. Mine was from tamoxifen. I recently had it removed when they removed my uterus and all is well...as yours will be, too!! Hang in there and plz keep us posted. 0 -
CP418,
I've heard great things about this facility specializing in things Pancreatic.
http://pancreasmd.org/
A friends husband is an Onc there..
Best wishes for good news!
Marcia0 -
Just saw this thread so thought I would add my story. I was diagnosed at the end of 2003, stage llb, grade 3, ER/PR+, HER+. I was treated at Dana Farber. I had minor lymph node activity, but neverthless, lymph node activity (one node, and one with micromets). I also had multifocal tumors. I had neoadjuvant chemo - I was in a clinical trial (herceptin and navelbene) and it shunk the tumors but the day before my scheduled lumpectomy, my surgeon called to tell me the end of my tests and just come in and they were recommending mastectomy. Best thing that ever happened to me by the way. I had the mastectomy followed by A/C, 33 courses of radiation, and then a year of herceptin.
A year and a half after my mastectomy I decided to have a prophylactic mastectomy of the remaining breast. I did it for two reasons - one is that I was going to have reconstruction and with radiation, your options are limited. I didn't have enough fat for a DIEP and was afraid to be under that long anyway. My PS told me that with lat flap reconstruction, any weight gain or loss would cause the other breast to be a different size from the reconstructed breast. Since I wanted even reconstruction I decided to go ahead and have the other breast removed. The second reason is that I was always nervous when it came time for my mammograms. So I thought it would be pretty cool not to have to worry about mammograms anymore!
A year and a half after finishing radiation, I had reconstruction. When I finished my year of herceptin I took arimidex for the next 6 years. I started a clinical trial of lexatrol but didn't like the side effects (I didn't have any with arimidex past the first 6 months, plus I never had hot flashes with it) and so I quit the trial.
I am healthy as a horse and intend to be around for a long time to come. I don't regret one stick of the treatment that I had and would do it all again if I had to. My bc was agressive so my treatment needed to be aggressive.
Best wishes to all of you.
Trisha
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Soccermom ---- THANK YOU!!! Running into some insurance denials trying to get a MRCP scan done which is like an MRI but more specific for pancreas. The radiologist who reported the pancreatic cyst from prior abdominal MRI said return in 6 months for repeat scan ----- so now Horizon BCBS is denying pre-approval to get MRCP done sooner. My PCP and new oncologist see the need for the scan so will have to get them involved to fight with the insurance company. I've decided to pursue going to a specialist preferably at a Pancreatic Dx Center to get evaluated instead of waiting for cyst to get bigger. Morphology looks like IPMN type where some have strong malignant pathology. Maybe the way colon polyps are evaluated and removed before they develop into full blown colon cancer. So why would anyone with a high risk pancreatic cyst want to wait 6 months to see if it grows and spreads to nodes?? This cyst is new since my breast cancer dx and was not present on any CT scans previously done. Curse on these insurance companies practising and controlling medicine....... End of rant. I sincerely thank you for this information. This is a vertical learning curve all over again like I went through with breast cancer. Ha Ha and they say to avoid stress. Too funny.
Joann0 -
Chrys23 - I just peeked back in at this forum and saw your recent posts. I am So SORRY to hear you have had such a horrible time on ALL your treatments. Sending hugs and prayers your way for good healing and speedy recovery SOON!! Hugs Joann
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Trisha...thank you so much for your story. It always does wonders for me to see ladies that are years out and doing well! God bless you my friend!
Tori
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Tori, you are more than welcome. And I LOVE your avatar. I live by that philosophy! When I was diagnosed I decided that:
1. It was just the luck of the draw, nothing more nothing less. (I do not have any of the BRCA genes.) If one in eight women are diagnosed with breast cancer, why not I?
2. It was just a bump in the road, a temporary situation that I would get past. I looked at it as a minor inconvenience. (There has to be something wrong with me, right?)
3. I WAS going to beat it and so anything I needed to do to attain that result, I was willing to do.
I was SUPREMELY lucky to be treated at Dana Farber because I believe they are pretty cutting edge and had all of the meds I needed to keep me from getting sick. I lost my hair of course but found a wig that was pretty much like my own hair. And when I was past A/C, my hair grew back.
Temporary!
Temporary!
Temporary!
God bless and keep up the good work!
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Trisha- I loved reading your story. It was inspirational and comforting to know that others walked this somehwat unpredictible walk before us and are still going strong. Thank you
Love hugs & prayers
Rose
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Trisha, thanks for your encouraging post. A friend of mine is newly diagnosed and everything just came all flooding back. It helped to read what you wrote.
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Thank you Trisha!
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Texas Rose, Reen, and Proud Mom - I am so happy if I helped out at all. When I came here for the first time I was overwhelmed by the support given to me by other sisters who had already walked in my shoes. I found them so inspirational. I'm sure that helped me in my journey. Keep up the good fight and remember that for every bad day you have, you are going to have a hundred more that are good. Don't ever beat yourselves up for down moments. But also believe that all of the treatment you've gone through (or may still be going through) has done what it's needed to in order for you to be on the winning side. Believe it! Also, read the research on curcumin. I take it every day.
And please let me know how all of you are doing. I will make it a point to read this thread faithfully (and help out whenever I can). I believe in giving back.
Love to all and God bless.
Trisha
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HappyTrisha - Thanks for your story. I am going to my last Herceptin on Jan. 19th and my diagnosis is very similar to yours. As many do when ending the last phase of active treatment my mind wanders to what the future holds - thanks to your story I am reasurred that the future can indeed be bright! I already knew that of course, but it always helps to see it in print!
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Special K - will you be in some kind of treatment after that? I notice you are ER+ and that usually calls for 5 years of either tamoxifen (if you are premenopausal) or an aromatase inhibitor - arimidex, letrozole, etc.
That's been shown to be very effective in preventing recurrences. I certainly hope your onc is recommending that!
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Happy Trish ~ You memtion curcumin~ I take a product called CuraMed. This is a high-potency formula providing superior support for the body's natural ant-inflammatory response, a healthy immune and cardiovascular system, and resistance to free radical activity. Of course I take this with calcium, vit D-3, and a multi Vitiamin.
Enjoy your day ladies~
Balsie
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Balsie, thanks I am definitely going to check it out. I believe in doing whatever I can to give myself an edge!
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Hi all, just thought I would post my experience.
I had mamograms every year and never had a problem, although, now looking back at it, the reports always specified that I had dense breast tissue. I know now that that was their way of saying that they really couldn't tell anything. Anyway, in Dec. 2010, I got a call back for an ultrasound, apparently, nothing was showing in my breast, but one lymph node next to my breast showed on the mammogram as swollen. So, I had the ultrasound and was told they couldn't find a tumor, so it must be an infection causing the lymph node to be swollen. The radiologist suggested that I call my primary care doctor and get a prescription for antibotics to take for 6-8 weeks and then have another ultrasound to see if the lymph node had shrunk. That didn't sound right to me as I hadn't been sick (and my sister had previously been diagnosed with DCIS and my aunt had had stage 1 breast cancer).
I went to my PCP and she suggested getting another ultrasound at another facility. (So in Jan 2011 I went to a radiologist that specialized in breast imaging. Best decision I ever made. They saw the lymph node and biopsied it two days later. I got a call the next day that it was cancer. Later, an MRI showed two areas of cancer in the breast, one was about 3 cm and the other less than 1 cm. I also had a PET scan which showed the cancer in the breast and a small area just outside the breast in the lymph nodes. Although the PET didn't specify a number of lymph nodes, my oncologist said she thought it was one or two. She suggested I have neoadjuvant chemo because I wanted reconstruction and she was worried that if I had surgery first and then had any infection from the expander it would delay the start of chemo. She wanted to stop the cancer before it could spread.
I am so glad that I did this. I had TAC chem, 6 infusions. It was tough, but at the end all tests, mammogram, ultrasound and MRI, showed no cancer remaining. At surgery, six weeks after the end of chem, there was nothing. Nine lymph nodes were removed and they were all negative. No remaining tumor cells in the breast. In fact, they could not even find a "tumor bed", the area where the tumor had been. It gave me hope that I might beat this thing.
I now feel great and am looking into a DIEP reconstruction in lieu of the implant I had originally planned.
When I heard that I had cancer in my lymph nodes I thought I was doomed. Now that I have discovered this site and read others experiences, I feel very positive.
Best wishes to everyone on their journey.
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barbme- Thanks for sharing your story. I know I have & I am sure others have experienced a few bumps in the road on our BC journey. It is comforting to hear from a long term survivor.
Gentle Hugs & wishes for continued excellent health coming your way
Rose
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Thanks so much for sharing your story barbme! Sometimes I think mammograms are practically useless. Anyway, it's great you are doing well now. My scans after surgery also indicated no evidence of metastesis! YAY!! I'll still be nervous when the next scans are due. I don't think that fear ever totally goes away.
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Has anyone ever heard of Indole 3 Carbinol (I3C)? My new Oncologist highly recommended I start taking it. He said it is showing great results in preventing recurrance. And, it is over the counter.
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Never heard of it
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It is also referred to as DIM. This is a natural supplement that many holistic woman take in place of tamoxifen. It is made up of cruciferous vegetables like cauliflower. It helps control estrogen levels. I, myself, tried it once in addition to my Tamox but I think my body went on overload and started having hot flashes, insomnia etc. Not to say its not a great supplement, I believe it is but it may just be too much in addition to our biological therapies. Try it. Whatever we can put in our arsenal, the better. Also, search DIM on this website and you will have lots of conversations to review. Good luck.
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HappyTrisha - I am post-meno (had a hyst/ooph 10 years ago when I was 45) and I started on Femara about 6 weeks after I finished chemo.
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A friend of mine just gave me a bottle of indole -3- carbinol and said it would be good to take this. What are your opinions? I take arimidex would this compliment this or not ?
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