Calling all TNs
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So, I feel is is about time to say Hi to everyone here. I've been lurking around for a while and I'm beginning to see the benefit of talking to people in similar positions, and not just scaring the willies out of myself by 'researching' on the Internet. I'm 39 and have been having yearly checks for BC for 10 years. This was due to having radiation therapy for Hodgkin's disease at 19, I was considered a slightly elevated risk of BC. Turns out they were right.
I was diagnosed with Triple Negative IDC at the end of April. 2 tumours, 1 x 2cm 1 x .8cm, both left breast. I've started AC chemo ( due to have 4), 3 weekly, with my third dose this week. After these I will change to Taxol for 12 weeks, with bilateral mastectomy planned at the end. I'm unable to have radiotherapy as I've had this in the past.
My question to you all - I am so terrified that the chemo isn't working. I can't feel the lumps as they are on the back chest wall but my breast isn't shrinking at all. In fact, it looks larger and is very tender. Also, my underarm and groin nodal area is very sore. Has this happened to anyone on Neo- adjunct chemo? Could it be the chemo working its way through the system?
Thanks in advance everyone. I guess my last question is - have I posted this question in the right area?
Cass x
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Cassy I'm sorry you had to come here but this is a great group of people. Your post caught my eye as my wife had stage 4 Hodgkins 17 years prior to her BC. She did not, however, have radiation for her Hodgkins. It affected her though, because she had had Adriamycin for her Hodgkins, which precluded her from having more Adriamycin for her BC. I think you definitely need to tell your MO about the tenderness/soreness in your neck/groin area. ALWAYS better to be safe.
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Welcome Cass. Yes you have come to the right place as we are all triple negative. I was going to suggest you post a message to AL Husband as his wife went through Hodgkins and would be the best one to help you. As AL said better to be safe and mention what is happening to your MO as soon as poss
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Jan, hey I've just thought of a good idea. What about Chloe as a sniffer dog. She would be great for you. All she needs is a big dog to chase (she's frightened of the little ones like her) and to be near a park. Let me know if she is of any use to you. lol
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Jan69= I met a lady who had a dog in the food store that could sniff if you had cancer,seizures,and other disorders. The dog sniffed my BF and did not react . It then sniffed me and it kept touching me. She said "honey are you aware have cancer" I had just finished my last treatment a week before. I told her I would inform my oncologist. Since then all my scans and test have been NED. So, I do not and did not put much credence in the dog. I think it was smelling all the chemicals in my system. Due to the fact the dog did not talk I was not able to find out what disorder I may have had. I already knew I had cancer. Please find a new MO not an animal.
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Hi Cassy, welcome to this group. You did post your questions in the right place. I had neoadjuvant therapy and my tumor and lymph nodes in my armpit got tender from time to time...usually a day or so after each infusion. I'm quite sure that it was sore from the chemo killing off cells. In my case, I could feel my tumor and it would typically swell a little bit and then shrink more each time it got sore. It would actually sometimes give off a stabbing pain while this was going on. I agree with AL and Cocker to let your MO know what you are feeling and where. Wishing you good results with your treatment. Have you joined the chemo group thread for the month you started chemo? It's also a good source for support and information. I still keep in touch with the ladies from my chemo thread group.
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Yes, Eileen, I'll get a human cancer detector. You make me laugh.
OK, Cocker, are you inviting me to New Zealand or are you shipping Chloe here? She would have a blast chasing birds, turkeys, skunks, foxes, bob tail cats, and all sorts of birds. I'd take that little snit if you came with her.
Welcome Cassie, this is a great place to land. Triple negative is not a death sentence. I'm 4 1/2 years since diagnosis and there are others who have been here lots longer.
I heard from the other dog sniffer place. They said they aren't looking for volunteers and said they don't think anyone should rely on dogs. Sounds familiar Eileen? OK, guess I'll call UCLA and see if they want to take on old worry wort who just wants a bit of follow up.
Hope you are all healthy, wealthy and wise. Jan
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Ladies & Gents,
Here is link that was forwarded to me via Facebook.
https://www.facebook.com/sadie.odell.9/posts/10152875241236366
Have a look.
Interesting
Had MO 6 mo checkup. Ok but for my peace of mind doing PET on Monday. She is great. Glad ditched the first one.
See surgeon for his 6 month check on Thursday. I feeling good except for sinus allergies.
Best to all
Marsha
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By all means DO NOT RELY on the sniffer dogs - I was going the medical route at the time. The thing is that cancer-detecting dogs are just another potential tool to use in the fight. As more of them are trained and the accuracy increases (through legitimate sources), it could prove beneficial for people to help in the decision whether to have a biopsy or not. I wouldn't judge the entire program by a lady in a food store with a dog. I also wouldn't base future treatment decisions solely on cancer-detecting dogs. Sorry if I misled anyone to think this was a 100% proven science.
Doreen
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Why a dog? They can train pigs to find truffles in France! Maybe we need a cancer sniffing oinker! We can name him "NED"!
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DorMac You are so right! I'm just so frustrated my MO that I was dreaming of some other way to get checked out.
ALH I could get a piggy, name him NED and watch him root around. Or head off to France and sit out in the fields and see what happens.
Guess I'll stick to modern medicine. Just don't know where to find it. Thanks for your help folks
Jan
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Hi Al husband and everyone, thanks for the advice, I am seeing my specialist tomorrow. Al - it appears I have many similarities with your wife. Not only did we both have Hodgkins. I've just taken a call from the doctor and I have tested positive for the brca2 gene. I'm not sure exactly how/ or if it will effect my treatment plan but I will discuss this with my MO tomorrow. My head is spinning.
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cassylou=Good luck tomorrow
Has anybody had the same problem as me. I had the BIG C from chemo. Still having issues. Went for GYN check up today and occult blood sample positive for blood. Told me to go get colonoscopy. Said probably a hemorrhoid. So,now I am thinking colon cancer. Happened to have a check up today with my GP. He ordered a endoscopy and colonoscopy. Also,full battery of blood work. He said my hematocrit would be low. Told him I had blood draws every week until 2 weeks ago for months due to low WBC. So, I am thinking I would have known something was wrong from my blood draws if I had rectal bleeding due to colon cancer. Tomorrow eye MD check up. Pray he does not give me any more fun news. Got appointment in 3 weeks to meet gastro and then he will schedule test. My GP said no to waiting that long. Too much anxiety. Gave me an office to call tomorrow to get in sooner. I really like him. Trying hard not to be anxious. Not one of my strong point. Now thinking maybe the dog knew something else was wrong with me.
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Oh Eileen, You have certainly had an exciting day. I'm so very sorry for all the stress that has been piled on you. I'm ready to pack up a dog and a pig and head for Vero Beach.
I'll be in your pocket or hold your hand. Your choice. Keep us updated. You have many friends here who care. Jan
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Eileen, I'm so sorry you're having a scare. You'll be in my prayers. Please keep us posted
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Eileen, - my mom had bc when she was 68, her father had colon cancer when he was in his 50s. In her 80s, she had bleeding and was SURE it was going to be colon cancer, and didnt even want to go to the dr. I finally convinced her to go, and it was, indeed, an internal hemmoroid (sp?), and she was FINE. (Lived to one month short of 99!)
Take a deep breath and TRY to keep your imagination from running away!
Hugs from NYC
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Hi ladies, I had to take a break from the forums for a while to help work through those darn recurrence fears. I'm happy to say I'm getting through most days without dwelling on cancer at all. I still have my moments, but I feel like I've finally turned a corner. I spoke with a therapist a few times and realized not knowing if I was stage IV or not back when I was initially diagnosed left me with some very, very mild PTSD symptoms. I kept replaying the moment my BS told me they'd found tumors on my sternum and spine, and the following two days waiting to find out if they were metastases or benign. It was much more traumatic for me than I allowed myself to think or feel. At the time I was trying to be so strong and stay in that fight mode, so I downplayed it. At the suggestion of my therapist, I pushed for one final follow up MRI on those tumors to ensure there was no growth. That was last week and although they are still "atypical" in appearance for benign bone tumors, there's been no growth or change. I feel good about putting the issue to rest and finally moving on. I turn 35 this Sunday and then get to celebrate my 1 year cancerversary in August. Very excited about both!
I think about you all so often and hope you're all doing and feeling well!
Shari - how are you doing? You were recently diagnosed when I had to step away and I've thought a lot about you. I hope you're feeling good. You look beautiful in your profile pic by the way!
Eileen - I'm so sorry you're having a scare. Sending you lots of good thoughts.
Meadow - hi lady! I hope you got my message. Sorry again for missing your PM a while back.
Cassie - I'm so sorry you're getting more news to deal with and process. I'm also BRCA2+. If you have any questions or need someone to bounce anything off of, please don't hesitate to ask.
Hugs to all
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Ally, You have found a way to push those recurrence worries to the back burner, and I say congratulations. I'm in a worry stage right now, for no particular reason. So glad you can really celebrate your birthday and your 1 year anniversary. Jan
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Eileen, we have deep pockets for you
Breathe, breathe------- will be praying for youAlly, wow, all great stuff! Your sharing made me sure stop and ponder, so thanks for that , wonderful to see you again!
Positive thoughts and gentle hugs to all
Kath
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Ally I'm so happy to hear your able to confront those fears and move on. This is a difficult thing for most of us. After TX, we are left to somehow enter survivor mode with no guidance other than follow up checks. Its difficult and daunting and each of us has to find our own way. I'm glad that you were able to get an MRI and better yet, no progression! I'm doing well, halfway through my chemo with the usual nausea and exhaustion. I'm battling my own feelings dealing with this recurrence and for some reason I just don't have confidence. It's taken awhile but I've come to peace and just plan on making memories and living my life. I'm sick of worrying about cancer- it's taken too much of my time and I can't change things. Hopefully this chemo gets rid of any 'strays' and for now I'm enjoying each day with new vigor.
Eileen thinking of you and hope you get answers soon- waiting is the worst.
To the newbies, this is the best place to be, full of wonderful smart inspirational women, welcome
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ally. I have some funky bone shadows on scans, really hard for me to accept but similar no growth in 2 yrs. I take regular breaks from the board, it stresses me out... like everyone else's anxiety amps me up. I think the 1st year is the hardest.
Nowadays, although my huge scars are a constant reminder, i only think about it when i geta new pain.
My stupid back right hip pain is back headed to MO 7/8 to order scans.
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Eileen, I hope you can get your colonoscopy soon. Not knowing what is going on is the hardest part. I've voting for hemorrhoids. It makes the most sense given the constipation from chemo. It's like voting for fat necrosis on breast biopsies. It's funny what we wish for after having cancer.
Ally, so nice to see you back! I'm glad you pushed for another scan and got good news. It helps so much to know exactly what the status is of something. I know I had PTSD for sure right after my diagnosis. I wish that it was better addressed with new cancer patients. I also went to see a therapist about my PTSD issues. I don't think it ever goes away completely, but it becomes more managable once we acknowlege it for what it is and take steps to address it. Good for you for doing that!
Jan.....I'm keeping my fingers crossed for you. I am fully expecting that we will be able to have a huge celebration for you next January. ((hugs))
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Oh...don't tell me I'm gonna have to write a poem about hemorrhoids. What the hell rhymes with hemorrhoids? Fat necrosis was tough enough!
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Ally I like your new picture--you look great!!
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AL - I'm trying to take a break from the site for awhile, but I just had to thank you for bringing a smile to my face. You are the best! Good wishes for your lucky wife.
Paula
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Starboards, rheumatoid, asteroids, castor oil, mastoid, opiods...just a few that I thought of.
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MO wants to do xray vs scan or mri...thoughts??
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AL here you go.
If you have carcinoids, anthropoids, alkaloids, humanoids and adenoids. then you get paranoid,
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I'd prefer the MRI or an ultrasound.
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Ladies my wife has been having some fairly persistent bone pain in her pelvic area. She is going in today for a bone scan to rule out mets. Please say a little prayer that that's exactly what happens and mets are "ruled out" definitively. I'd sure appreciate it. Thanks
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