A place to greet and meet newbies to stage III
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Good for you for being proactive with doctors. I had port inserted and 4 mos. chemo before surgery.
My surgery was 7/30. I started PT 3 weeks later for lymphedema prevention and to restore range of motion and had 3 appts after my mastectomy & ALND and before my exchange. It helped significantly and I really like the PT specialist. Looking forward to getting back to it.
To all - yes. waiting for results is tough. Distraction (to the extent possible) helped me - spending time with people, watching a movie, etc. Got one body blow after another in March-April with each test, then found out after surgery that 5/14 nodes positive. Of course I am worried. There is necessary mental processing and grieving to do, while trying not to have fears and other tough feelings (anguish?) take over. Be as nice to yourself as you can - I have found these forums to be a wonderful source of love and strength. Thanks to all!
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Hi all,
I'm a newbie here. Unfortunately. I've been doing a lot of reading the last few days. There are a lot of wonderful ladies here who are sharing their journey in cyberspace.
What I am really hoping for is that someone, anyone will have experienced something similar as to what I have. I already know there are no 2 stories that are the same but mine seems especially weird.
It's been a hard road for me. I'm young, only 43, and didn't have the typical presentation of bc. Last fall during my annual checkup, my doctor asked me if I had had a mammogram. I was 42 at that point and honestly, it hadn't occurred to me. I had been busy and it had been a very tough couple of years. So, I told her I would go, yada, yada. I felt fine.
A couple of months later, I started having some weird, vague symptoms in both my breasts, pain and swelling. It was more pronounced in my left but it was in both. I kind of worried about it but life went on. The pain continued here and there, my left breast seemed consistently swollen and felt like it did when I was breastfeeding my babies. I had done several breast self-exams, no lumps, no dimpling, no anything. Just swelling.
In May, I noticed that my left nipple was a little flatter than my right. I got a little more worried but hey, I had just started a new job, we were getting ready to move and my daughter was graduating from HS. I had plenty to do but made a mental note to schedule that mammogram! I kept checking my breasts for lumps but felt nothing. A few weeks later, I was in the shower and noticed a little blood from my left nipple. I freaked and called my doctor immediately. She sent me for my first ever mammogram. I honestly don't know what I was so scared of, the mammogram was easy.
Because of my suspicious discharge the radiologist looked at my slides immediately but didn't see anything suspicious. I felt a little better but then the next day I got a call where I was told that I had some suspicious calcifications and they wanted to do a biopsy, just to be safe. I was assured that the odds were in my favor by about 85%. It was a few weeks before they could do the biopsy and get the report back-by now it was early July but I found out I had a small area of DCIS with a microscopic bit of invasive breast cancer.
I was upset and shocked but dealt with it. My surgeon assured me that it was not a big deal and that I didn't have to do anything immediately. I could get a lumpectomy with some radiation and that would be it. I also went for an MRI which didn't find anything beyond that one spot either.
I felt like I had dodged a bullet.
I was enjoying my summer. We moved into our new house. My diagnosis was in the back of my mind all the time, I was kind of sad but felt relieved that it wasn't worse. In mid-August, at my surgeon's suggestion, I went in for a lumpectomy. All very routine. When I woke up from surgery, I happened to see the clock and knew that a lot more time had passed than was expected-I knew my husband had been waiting anxiously for me to come out of surgery. Something was wrong; I could just tell even though the nurses attending me didn't say anything other than to help me recover.
I soon found out that I had had a 6.5cm tumor removed from my left breast, at least 8 positive nodes and no clear margins--I was supposed to "only" have DCIS!
A week later I was able to get in at a major cancer center several hours from where we live. My reports were reanalyzed, I had more tests and scans and was scheduled for a mastectomy the next week.
I found out I had Stage IIIb cancer when I only thought I had DCIS. It was terrible; like I had to be diagnosed twice.
My mastectomy went very well--there is something to be said for going to a top-rate cancer center. No additional nodes were involved and had clean margins.
Now I face chemotherapy. I do not want to do this.
Thank you for reading. I didn't mean to make it so long but it was therapeutic to write it all out. All my doctors agree that my presentation was unusual-and serious. There was no suspicious lump and my mammogram was inconclusive. I think they only took a second look because of my nipple discharge. Otherwise, I think I would have been given a clean bill of health.
Has anyone out there ever faced something similar? I feel alone in my hard road to my diagnosis. I'm terrified.
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Your cancer grew quickly. It wasnt on the mri. Things cant hide from mri.
I am sorry you are here. It sucks in beginning.
My story I had dx mammo at 42. Was so releaved when he said it was nothing. US wand was on rt upper breast. Next yrs mammo neg. I felt the lump about six months after that mammo. Read my reports then. It talked about this thing there. Cant remember wording they used. My radiologists failed me. I could have been dx at earlier stage. I was angry for long time. etc etc.
Hugs0 -
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Macy - I am so sorry you are going through all this. Feel free to express yourself as long and as often as you want. Getting it out helps. A lot of us have had the shock of thinking our situation was one thing - then we found out it's much more serious. We can totally relate. Chemo terrified me too but I made it through. If that's the course you decided to take just know you will make it too. Hang in there.
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Hey Macy,
Kaydee is on the cold cap thread too. I followed her here and that's how I ran across you on the other thread. Funny how we link from place to place and find each other! I hope she doesn't mind my passing that info along, but she could answer cold cap questions too.
Take care,
Lynne0 -
Macy, what a rollercoaster you have been on. I am also 3B and some of my symptoms were similar to yours. May I ask if your cancer was lobular? Because mine was and I also had that feeling of milk let-down on and off.
Chemo sucks, but it is completely doable, IME. I was scared silly before starting, and then I pretty much sailed through. You do get tired and somewhat worn, but I never puked or had any serious complications. Exercise helps. Try to get out for a walk, however short and slow, every day. When you feel well, do more. If people offer help, take it! Make them do as much of the boring, miserable stuff as possible. You can almost get away with murder when you are the cancer girl. Milk it and have a good time doing it. Don't vacuum, buy shoes!
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And drink lotsa water. I drank three 33 oz bottles a day. On last chemo, happened to notice my bottle had mold growing in it. I was germ freak. So wash that bottle more than i did. Constipation was my worst side effect
I finally came to terms with my situation. I now look at it like well if I was like stage 1 i would have prob just had lumpectomy and knowing me it would have come back. My life completely changed. I probably wouldnt do all i do to keep it away. I would have come complacent. So thanks Dr Patil
Anyone doing anything fun this weekend? I am sitting outside watching my new pup dig dirt out of planter. Work later, then housework. Something is wrong with this picture. My rooster is going to new forever home today. Going to be gaurding some chicks. So happy he wont be sunday dinner or cock fighter. My older dd wanted chickens. So i said what the hell this spring. Said same thing when other dd wanted pup. What the hell. Say that a lot now. Pup is 3 months old black lab/border collie mix. Rescue guy was giving her away at poultry swap last week.0 -
Aaahh, thanks ladies for reading my incredibly long, probably boring post. It helps to know that I wasn't completely alone in my experience. It has taken me a long time to come to grips with my diagnosis because we women are trained to believe that we will find a lump or that something will show up on a mammogram that will lead to our diagnosis. So not true.
Anyway, my next hurdle is finding a good, local clinic for my chemo treatments and getting a 2nd opinion. I want to understand everything first and more perspectives is helpful to me. My cancer center is 10 hours away so I will go there for the major stuff. I am still recovering from my mastectomy but I feel great!
I'm a runner so I plan to keep exercising as much as possible throughout my treatment. Even if I can't full-out run at times, I will walk.
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((((HUGS)))) Macy,
I am so sorry you are going through this! I had mamos regularly and they didn't pick up my BC. For YEARS I had sworn something wasn't right, but all the tests, etc came back "normal". One day, in the shower as well, I found a knot way inside my breast. Fast forward and damn if I didn't have multi centric disease in my right breast with my largest tumor being 6.5 cm as well! Wtf?
Chemo is doable Macy. Hard but doable. On my worst days I kept telling myself "this is only temporary"! Over and over. Get a good support system together, if you can, find a local in person support group (most larger hospitals have them) and of course stay in touch with us here. Nothing is off limits so ask away! We'll be here for you.
Sharon0 -
Ohio4me, thank you for responding last time I wrote and I think you are so right about protein, my 1st round I ate protein pretty good and only my WBC dropped but after the 2nd treatment I could not eat meat at all so my WBC and RBC'S dropped critically low, I saw MO I week after Tx and he moved to every 3 weeks of A/C and cytoxin instead of every 2 weeks so I go back next Thursday for Big Red #3. I will be making it a point to eat much more protein this time.
Macy, I am so sorry your journey has been so difficult, but you have come to the right place for support and help, I have been spending most of my time on the August chemo thread but I feel a little more at home here as most ladies there are stage 1&2. My story differs from yours a bit but I know your fear and how hard it is to comprehend it all. I am 50 years old, I have had many negative mammo's and no family history. I went for my routine mammo in May of this year and then I was called back for more films and an U/S, next day Bx and the radiologist told me it did not look good, so the next day he called and confirmed that I had Invasive Lobular Carcinoma and it is aggressive so call your PCP right away and get a referral to a surgeon. I knew who I would go to for my surgery and I did a lot of research, my BS and I were totally on the same page about doing BLM as ILC is sneaky and tends to be B/L. I went into surgery thinking I was going to get tissue expanders in but during surgery My BS and PS spoke with my husband and they felt is was best to delay recon due to 2 nodes coming back positive. I woke up to no recon and I was scared to death and I knew something was wrong, I think they made a good call because they did not want to delay my treatment. I will try to wrap this up quickly, so I see BS for a 1week f/u only to find out 15/15 nodes came back bad, so now I have to do chemo and rads. After my 1st chemo my shingles flaired up really bad in my low back and I ended up in the hospital and they want to do CT scan and MRI and find some very small mets in my spine???????? I had a PET scan 3 weeks prior that was all clean except I had more node insolvent. So at that point I lost it, 4 months ago I did not even know I had cancer now I find out it has gone to my spine, Holy Shit, I have been so scared and emotional ever since, MO said the spots are very small and the chemo should get them but we will have to do another MRI with the PEt scan after chemo is done. I feel that BC is always a scary thing to hear but when we hear so quickly that we are a stage 3 it is very hard to wrap our minds around, but these boards have been so helpful for me, please keep us posted and if you have any questions please feel free to PM me, I don't know a lot but I have been thought a lot in a few short months and I can help at all I would love to. May God bless and keep us all.
Shary🍂0 -
Macy,
These woman have been a life line for me since being dx on the eve of my 43rd b-day. 2 years of mammos missed my cancer; 9 months before my dx, I had a thermogram and my annual checkup - both missed it too. I have been working through a lot of anger issues related to it being missed.
I was terrified of chemo but got through 5 months of neoadjuvant and now a week out since my mx.
Hang in there - you can/will get through it.0 -
Shary, your picture is beautiful I think red is definitely your color. Get you some protein shakes. They might help.
Macy welcome. Im sorry you have to be here but im glad you found us. I was 42 at diagnosis and my mamo didnt show mine either. I have Ilc. I dont think I had time to grieve until I was through with treament and surgeries. Sending healing prayers to you
Fredntan, I bet you are excited to get your nipples. You did tats right? Did it hurt? I was suppose to have an appt with my ps this past tues. to talk about getting tats but cellulitis put me in the hospital last Sat and I dont think I will get them for a while. Im hurting too much and my ps now wants me to go to pain managment and get an intercostal nerve block ugh. That doesnt even sound fun. Lol
Healing hugs to all0 -
The tats didnt hurt at all. I dont have any feeling in boobs. I did have him cover up rad tat. Owch that hurt.
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Where were your rad tats and how did they cover them. I think i have about five of those.
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Thank you, ladies for all your kind words of encouragement!
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I had a CT Scan to check for mets on 9/10 and was waiting for my 9/19 appointment with the MO to find out the results. This morning my Gynocologist's office called to schedule a pelvic ultrasound. She has not been involved in this process so I was surprised by the call. I told the scheduler "OK, but how come?". She didn't have the answer but would email the Dr who was not in the office today and find out some details. We laughed together as we were trying to put the pieces of the puzzle together. I checked my email when we hung up and got a notice that there was an update to my health chart and it happened to be an email from my Dr that she sent really early this morning. So now I have the "how come". They saw a small fibroid and some ovarian cysts but there were no concerns. However, there is about a 1/2 inch of something suspicious in my right ovary. They suggested the ultrasound to evaluate it further. She also said it was likely that I would be referred for genetic counseling.
My ultrasound is scheduled for Thursday.
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Hugs and prayers headed your ways Pam. I know waiting even a couple days is tough. Best of luck. Lynne
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Mel I only had 1 tiny rad tat in center of chest. Hecovered it with flesh colored ink. Have to really look for it now.
Good luck Macy0 -
I am reading new book
The whole food guide for breast cancer survivors.
I knew about the vit D thing. Had never really heard about iodine deficiency thing. Very interesting. He has website with same name as book. Had seaweed chips at lunch0 -
Pam358..just wanted you to know I am thinking of you tomorrow as you have an ultrasound on the 1/2 suspicious spot...hoping it nothing for concern! Please keep us posted.
Macy...thank you so much for taking the time to share your story. I can relate as my BC was missed on two mammograms. I am sorry for all the difficulties, but thankful you went to a major cancer center. Have you started your chemo yet? Please know so many of us also did chemo and still here to speak of it...you will get to the other side of chemo and your hair will be back!! Plan something fun for your good days between chemo! Also drink lots of water.
Gavinsgrandma..yes, you have been through a lot in a few months. Breast Cancer doesn't give mush warning and it most often is a shock. Hoping the chemo takes care of those spots on the spine and your next Pet scan shows all clear. I know this is a scary time, so please ask any question as we have some of the wisest woman on here. Please keep us posted on how chemo is going for you!!
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Good luck Pam! Go kick butt and take names!
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Thanks for remembering my appointment tomorrow (or actually later today, guess I better go to sleep). Big day - MO, BS and ultrasound. Let's hope having the Ultrasound with a full bladder is the worst part!
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Pam-- I have had those busy days with back to back appts! Wears you out! I asked my ultra sound tech if I got a cigarette when she was done with me! Felt good when I got to pee. They found a fibroid too
Hope you get the most boring results ever!0 -
Hi Ladies. I am an oldster and come here to lend some support to you newbies.
Macy, My story is similiar to yours. I was almost 50, and at first told I wad probably a stage 1 BC. During my lumpectomy, I actually heard the surgeon say I really " lit up", meaning my nodes were affected. Sure enough when I awoke from Surgery I had 12 positive nodes (out of 14) extraencapsulated, lymph and vascular invasion, IDC, with lobes ,and nipple spread, NO clean margins and my tumoe was er/ r negative and later fund out I was also HER2 positive. Holy Crap!!!
Shary, I was diagnosed with stage IIIC almost exactly 8 years from your diagnosis. Although I don't have ILC, I do know ILC is highly reactive to the chemo regimen you are receiving.
Pam, since you are ER/PR positive, they need to look closely at your Ovaries. You may be BRCA positive, which kicks up the ante for ovary removal. Try not to be too worried. Your docs are taking good care of you,
Dear Ladies, Back in the first days of my dx (almost 8 and 1/2 years ago) there was bad new after bad news. I never got clean margins from my final surgery and my had to present my case to the tumor Board as my prognosis was so dismal. Please remember this was over 8 years ago, and the landscape pf BC tx is truly getter better.
I have now just returned from my 6 mos check up (I was actually 5 months late!) and am FINE. Please hold on to the fact that it is a rough ride, but you will get through it. Come here often for support and accurate information. It was so reassuring to me that I wasn't alone in this stage III journey when I was on these boardd daily. There are more and more ladies out there just like me. We keep in touch and all have moved into a wondrous world post BC.
I wish you all a gentle ride and a soft landing on the other side of BC.
God Bless.
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lkc~~Thanks for sharing. We love and need to hear these positive stories. I had scans before chemo (looking for bone mets). They were repeated before rads, and onc intends to do them again in Dec. ( about 5 months post treatment). It feels like she's going to keep looking until she finds something. I really like her though, and I'm glad she's aggressive, but this constant looking for mets makes me nervous.
Paula0 -
Ikc, thank you for sharing with me, that is very encouraging to hear that you are 8 years out. congratulations, are you doing good still? Have a great day😄
Shary🍂0 -
Lkc thank you so much. I'm so grateful for people who come back and share their successes with us. It's truly uplifting and helps us get through the dark days. Your support is much appreciated.
Kay0 -
The chemo is working: shrunken beyond rcognition the doctor said after yesterday's ultrasound! thankful, V
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HVV -- that is such awesome news heading into the weekend. Congratulations!
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