Calling all TNs
Comments
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AL - so very happy to hear your wife's PET was all clear. I hope you get to the root of her symptoms and she finds relief soon.
Cathy - congrats on your first cancerversary!
Dizzy - 5 years!!! Huzzah!!!
Curly - seriously...another scar?! As Meadow, I also half smirked, but also half swore out loud at the computer. Like you give a rat's patoot at this point. Just get it out and give you the all clear, thank you very much! I hope this process goes quickly and you get that all clear asap! Sending you tons of hugs and good thoughts. xo
BanR - so sorry you're also having a scare. In your pocket. Please keep us posted. xo
So I'm not quite sure if I'm having a scare of not. About 4-5 months ago, I started to have occasional pain in my left hip (cancer side). I had just gone back to work 3 days a week (desk job) and figured it was all the sitting. With my new schedule, I was eating less and lost about 10 pounds. Wohoo right? Well, fast forward to today and I'm now down 25 pounds for absolutely no reason other than I NEVER have an appetite. I have to force myself to eat and even then I take a few bites and it's just not appetizing. And the hip pain is daily and nightly at this point...but oddly enough my right hip hurts once in a while now too. The old me would have freaked out months ago, demanding scans, but I've been pretty chill about it all. I had a physical a couple months ago with bloodwork and my thyroid and labs were great...other than borderline high cholesterol. I'm hypothyroid, so my synthroid dosage is good and that's not the issue. I've been under a lot of stress, and and I'm definitely the opposite of a stress eater. So I keep attributing the weight loss to that. I would think if it was triple negative mets, the pain would be intolerable by now, or I'd be showing other signs of something. My next follow up is early November. I'll be curious what they want to do. As for now, I take solace when the other hip hurts too lol. Hopefully this is just another new normal, post chemo, menopause gift...
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Stuck between protocols and processes!
have a query.
1>once a suspicious mass is established in the MRI what is the immediate next step?
2> How frequently can a mammogram be done ( per year)?
3> Is this the nation wide/ world wide protocol that without mammo, an ultrasound cannot be performed. Also, the sequence has to be, first mammo then ultrasound. Is the sequence so important, that if ultrasound needs to happen first, followed by mammo, the entire appointment stands cancelled?
Your experience on this please!!
The fact that I have a history of cancer and now living with a suspicious mass should make my case urgent anyway. On the contrary I am having to face all these. Absolutely disappointed with the service, suddenly feel like a customer and not like a patient.
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hi all, i'm new to this thread. i've recently had a right breast mastectomy about 3 weeks ago and my tumor biopsy resulted in a stage llB, nuclear grade 3 histopath findings. My hormonal assays were 5% ER+, 3%PR+, HER2 negative. From these results, shall i consider my case a Triple Negative Breast Cancer? My ER/PR are both very low but still positives. This somewhat confuses me. What treatment should i expect? Chemo or Hormonal therapy?
If there's anyobody here with the same or similar case as mine, may i please know what treatment was given you and what should i expect in the days ahead.
Thanks for letting me post here. God bless us all and take care.
gmmiph
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gmm, your er pr is mildly positive. You are triple negative in that case. Hormonal therapy is not for you since in your case the risks of hormonal therapy will outweigh its benefits
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Hi BanR
I can only comment on the UK NHS guidelines, but generally the checkup/follow-up procedure is 1-2 mammograms a year. I'm not aware there is a limit though on how many mammograms you can have in a year. There is no need to have a mammo before ultrasound. In younger patients mammograms are actually not that useful anyway due to the denseness of younger breast tissue and often if there is any suspect masses from physical examination, ultrasound will be used first anyway since it is faster and cheaper.
I would have thought if a suspicious mass has been seen with MRI, both mammo and ultrasound (probably with biopsy) would be done immediatley, but the order of this doesn't matter.
I hope you can have the appropiate scans done quickly and fingers crossed it turns out to be nothing.
Hugs and prayers
Tom
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Allydp, hi!! Sending you positive thoughts and hugs!
BanR, sorry I can't help with any info, I'm just finished with treatment myself. Hope things get sorted out and it's benign!! Thinking of you.
gmmiph, I've been treated triple neg, original biopsy was negative and my surgical pathology showed very weak ER+, 2%, and my MO is actually considering a trial of Tamoxifen, I see her in Nov and will know more. I had neoadjuvant chemo and a lumpectomy.
Hugs to all.
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hi banr & lifealoft,
thank you for your prompt replies to my query. this community is really a lot of help to those suffering from bc as it gives hope, encouragement, knowledge and timely advice to the many suffering and confused cancer patients around the world.
it is clear to me now that i am to be considered as a tnbc case as both of you have similar cases as mine. the only difference is that you both underwent lumpectomy while mine was outright mastectomy thru frozen section procedure.
i will be having my lab tests this week, blood, echogram, bone & ct scans before i go back to my MO to determine what kind of therapy and drugs i would use although she said during my previous checkup that i am likely to undergo chemo.
banr, sorry to hear your problem. i wish i have answers to your queries, but i am also new to this cancer thing. maybe what we could do is offer prayers for each other for God to give us answers and for our complete healing. this i will gladly do for you.
lifealoft, i can see that you already went thru 2 chemos, one with ACT & the other with carboplatin and taxol within only a 3-month interval. why so? was it really pre-planned by your MO? or was the first chemo ineffective hence the change. what was the difference between your 2 chemos in terms of clinical findings and succeding lab tests, if there are any?
i read that carboplatin is a new and very good complementary drug to taxol. was it effective for you? sorry for the many questions my dear. i am just so scared of the chemo's side effects & uncertainties, and becoz of the previous deaths (about 7 years ago) of my father and my cousin doc. my father died from stage 4 kidney cancer about two years after the operation and without chemo, while my cousin doc also died 2 years after having mastectomy and chemo. she died a year ahead of my father. i also have other relatives who all died becoz of this dreaded C. So now i guess it is my turn to challenge this disease and hopefully be the first one to survive in our family.
i think my post is already too long and i wouldnt want you to get bored with it, so this is all for now. i will let you know of whatever developments i may have in the future and i hope we keep in touch. it is comforting to know there is someone who shares my pain and cares.
again, my deep appreciation for your support and may the Almighty guide and protect us. no goodbyes please.
gmmiph
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gmmiph, I will send you a private message and hopefully answer some of your questions.
((Hugs))
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Thanks Tom (breastcancerhusband) for your prompt reply.
thanks lifealoft and gmm for the good wishes.
Called them up and pushed for an early appointment. The mammo was done first followed by ultrasound since this centre never does a diagnostic ultrasound without the mammo happening before it. No idea why. They couldn't figure out anything Next week is the MRI guided biopsy.
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Good luck BanR. Have you had an MRI guided biopsy before?
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hi lifealoft,
thank you for that wonderful & informative private message you sent me. that really gives me high hopes to look forward and plan ahead.
yesterday, i've had 2d echo and blood tests, today, i'll be having bone scan. tomorrow, ct scan. results will be completed next week and then back to my MO for assessment and possible chemo. i'll keep you posted for more.
hi banr, thinking of you and hope youre doing fine.
i'm praying hard for all of us here afflicted with this dreadful disease. let's all try to use the "power of group prayer" for our complete healing. the combined prayers of 2 or more persons is better than just being alone and knowing that somewhere in this world, someone is praying for us is certainly a big lift to our spirits.
keep in touch, God bless.
gmmiph
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I am praying every day for all of us❤️
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hi cathytoo,
thank you for your prayers. we definitely need it. God bless. A big YES to the power of prayers for all of us
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lovemy..
An MRI itself is scary enough. I can't imagine a needle going in, in a claustrophobic environment.
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BanR, they don't put the needles in while you are in there. You go in for them to locate the lump, pull,you out, put the needles in. Back in you go to make sure they are in the right place, then they take the biopsies. Make sure they use enough lidocaine.
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Me too, Cathy
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ACHES AND PAINS!...my last infusion was May 18th. I had no side effects but now I have shoulder pain that has progressed to waking up feeling stiff and in pain all over. I was fearful of a recurrence but saw a physical therapist who discounted this because the pain does lessen and/or disappear. He said pain from bone mets stays the same. But, my question is...have any of you experienced aches MONTHS AFTER chemo?
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Cathy, it is very common for bc patients to get a locked shoulder. Not sure why, but it is a "thing". I had a locked shoulder after treatment, and had PT to improve it, and it did improve a lot. A yes, aches too! I hope you get some other responses too. Hang in there.
Ally, so good to hear from you,
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Meadow...does it seem strange to you that this would happen 2 1/2 months after radiation? It is my right shoulder and it was my right breast. Radiation position was very painful for me. I guess I should have a bone scan or MRI, but I just don't want to keep chasing cancer. I have had body aches and pains before (I'm in my 70's), but breast cancer changes everything! I'm hoping that exercising in a hot therapy pool will make a big difference. Just thinking about that pool makes me feel better
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Cathytoo, I think the long term side effects of radiation are downplayed. I haven't vetted this site, but it mentions shoulder pain and restrictions in movement. I've had an encapsulated shoulder for years and know it will be a problem for radiation. I was surprised to see where the radiation itself can cause a second cancer in 8% of patients. I thought of that complication as very rare, butt almost 10%. Radiation is recommended routinely with lumpectomies, but YIKES!
http://www.thebreastcaresite.com/after-surgery/rec...
Lyn
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Hi Cathy
My wife still gets aches and pain from chemo - she finished treatment May 2015. She never had radiotherapy, but like chemo it can takes an age to recover. I hope your aches and pains get better soon. Long hot bath!
Incidentally, are you really in your 70's! You look way way way younger in your picture!
Tom
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Chiming in on the aches and pains. I have chronic hip and back pain ever since finishing treatment. I think the hysterectomy made my bones very weak. I noticed that after a weekend of really playing with the kids hard my back hurts a lot. I had a scan recently and it was fine, it was clear. I also have a lot of right shoulder right chest locking up after all these years. It's definitely a real thing.
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Surgery scheduled for Monday... whatever "it" is has received an eviction notice. And the wait for pathology to come back starts Monday. Just curious, has anyone heard of someone TN that has bmx, 6 rounds T-AC, 32 whole breast rads that has a local recurrence? I have looked thru the boards and have not found any.... But it could be I'm not looking hard enough to give myself a false sense of hope that it is unheard of to come back after all that!!!
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I would be so totally surprised if it is a recurrence, Janet. You did everything to keep it at bay and trust that this is simply a pesky little benign thing. I have not heard of a local recurrence after THAT much treatment!
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Speaking of aches and pains.....I had left sided rib pain - all up and down my left side and into my shoulder blade. Now it is completely gone from there but now my neck- both sides- feel so stiff and tight and painful. I think it is all the stress of overwhelming fear for a month. I feel exhausted!
Any one else get a major scare of metastasis and then your body screams out at you from stress in a totally different place???
Janet
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((CurlyQ)) Sending you best wishes, a speedy recovery, and benign findings.
Anyone's MO put them on Zomeda? Mine wants to do a bone density test, then depending on the findings, maybe put me on Zomeda. She says it would give me a percent or two protection from recurrence.
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BanR, when is your MRI? Thinking of you.
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I'm sorry it's been so long since I've posted anything. My Husbands sister passed away June 14 and that was a lot for the family to go through. She had breast cancer that had metastasized to her lungs, liver, and bones. She was one of the bravest women I know. My last catscan was normal the 4 mm module is still there but it hasn't changed so that is good. I get my next catscan in january and hopefully it will be fine as well. As of this past September 25th I am cancer free 1 year!
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Banr, thinking of you as you get your biopsy. I hope all goes well.
Curly....hoping that sucker is benign when that get it out.
Ally, I'm in the same boat with you with hip pain and no appetite. Like you, the old me would have been banging on my MO's door to find out what is going on. As it is, my appointment with my MO is in mid-November and I'm fine with waiting. I'm pretty sure mine is bursitis or some such thing so I've gone so far as to request an appointment with a sports medicine doctor. I hope everything turns out to be okay for both of us.
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simplelife4real...I have had continuing aches and pains for the past month. Some days worse than others. I did see a physical therapist for an evaluation and asked about bone met possibility. He said that he saw no "red flags" during the evaluation. I've been doing the prescribed exercises, and I do see improvement, but I'm not "ache free". I'm just one year from diagnosis so a recurrence is upper most in my mind.
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