IBC lounge: roll call, support and just a good place to hang out
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Oh Val, just so sorry! I am so glad you are recovering! Do you have any paralysis or effects from the stroke? Sending you the biggest hug ever.
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Sorry to hear of your recent stroke Valstim. Glad you are home from hospital now and wishing you all the best for your recovery. So pleased all other scans, tests are clear. X
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That's a bummer Val, but since you were treated in a timely manner you'll make a quick recovery from this event if you get right into the exercise rehab. At least that's what happened in my case when I had a massive cerebral haemorrhage ten years ago. While it may be minor compared to bc, treat it as a warning sign and be alert for future stroke symptoms. And, yes, positive scans are certainly great news.
Today I get the results from a prostate biopsy I had last week. Turns out that nearly 30 percent of males with bc go on to get PC as a new primary. What fun that would be! Not.
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Thanks so much everyone. I have a weakness in my arm, and my balance is a little off. Hoping therapy will help. I was dealing with some pretty awful rad burns on my neck, so this hit me by surprise.
argggh is all I can say.
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Traveltext, certainly hoping and praying for benign results, one cancer is plenty thank you. Keep us posted.
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Thanks Meadow and Hydranne. Following a MRI last week that clearly showed a growth on the prostate, my urologist did a biopsy and has just this morning diagnosed a medium-grade prostate cancer with a Gleason score of 7 and a stage T2 to 3. It's a primary, not a bc secondary thank goodness. On Thursday I'm having a PET scan to ensure the disease has not spread to other parts of the body. This is unlikely, but better to be sure. He thinks my BRCA1 gene, which was the likely cause of by bc, is responsible for the pc. I'm booked in for a robotic prostatectomy in a couple of months. I have an excellent surgeon for the job and I've complete confidence that I'll achieve a positive outcome. A recent study showed that 30% of men who get bc go on to develop pc as a second primary. As if I didn't already draw the short straw with IBC, now this. But, such is life.
I'll still be on this IBC thread, but will post a new thread on BCO to alert other bc men to the possibility of pc and perhaps record this new journey there.
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Dear Traveltext, what can I say? Sorry to hear your news. Hoping that the PET scan on Thursday is clear. I would like to follow the pc journey too so just let me know the page or link when you have it sorted. I have an appointment tomorrow so may get results then or next week. Trying to enjoy the rare bank holiday sunshine we have here today.
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Traveltext, sorry about how the news. As always, you seem to be handling it with wisdom and nerves of steel. You are no doubt going to get a lot of "my so and so had prostrate cancer....." so let me be the first here....my dad was diagnosed with PC last year, he is much older than you at 84, but be had a great outcome from his cryogenic surgery. His surgeon froze his prostate, and his psa dropped from 7, to 0. I expect a good outcome for you too. Sending you my support as always.
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Had my skin biopsy results....... Unfortunately it is cancerous. So I am having another bone scan, CT scan, echo cardiogram. The treatment plan will be chemotherapy and /or radiotherapy. I am devastated as I haven't even completed my original treatment plan and the cancer is spreading, and fast. And the thoughts of facing more chemo..... Ugh. This inflammatory breast cancer is such a nasty disease.
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Oh TT and minimoocher so sorry for your results. Traveltext I really appreciate your educating others and I will follow your other thread and hope you stay with us on this one as well.
Minnimoocher, I don't know what to say except gentle hugs your way. Please stay with us on this thread so we can give you support.
I'm doing ok, a little weak but have to work my way back and let my body heal. So much for vacation. It happened the morning we were leaving. Glad to be able to walk and get my thoughts together.
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Minimoocher, Likely the tumorous skin will respond to that treatment. Good luck with the bone scan.
Valstim, bummer re the holiday, but focus on getting full functionality back. All studies on strokes show that a quick return to normal leads tom a full recovery.
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Thanks so much everyone. It's hard as my DD is still typing for me. I can't get my hands and brain to connect along with some weakness. I start therapy tomorrow. Pretty intense I hear.
TT thanks so much for thinking of me with what you are facing.
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Oh no...I come back after a week and was hoping to read about Vals fun vacation and I read all these dreadful things.
Val, hang in there! We haven't been through hell the last months for you to get a stroke, okay? The therapy will work, I'm glad it was caught on time.
Traveltext, really bad luck! That sucks. At least there's a plan.
Mini, {hugs}. One step at the time. Hopefully all the other scans are clean.
Hydranne, congrats on the end of the rads. How are you feeling?
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The skin was peeling and there was fluid coming out of the wounds. But now it looks much better and it's not painful at all. We wanted a quiet vacation, well, we got it
It was so quiet with nothing else to do apart from eating, swimming and sleeping. The beach was almost private which was ideal for me cause I was VERY conscious about my non breasts. I could swim and there were no other people around apart from my family, so I didn't feel that bad. I'm so tired. 0 -
My mother was diagnosed a few months ago with stage 4 IBC with mets to liver and lungs. She completed 4 cycles of the Red Devil with under the circumstances(clearly this is chemo) besides a little sick and tired did fairly well. Had her first scan after starting treatment and was just told her tumors shrunk. That was it. Still haven't even seen the scans. When asked how many tumors its just answered with too many tumors to count(so yeah we just leave it at that I guess) She then started the Abraxayne(IM sure I misspelled that). This one seems to be worse on her. Her whole body aches and by the end of the day she can barely walk. She just had her last treatment of that one last week and she seems to be at her worst all while acting like she is totally fine. Yes, she is the one with terminal cancer but still has to make sure everyone around her is okay. Although she hasn't told me but I think she thinks it is getting close. She thinks it has spread to her bones now which in return is why I think she is getting depressed. Could this not be the case? Could it just be the more chemo the harder it gets? I just hate thinking or worrying about it not working or spreading even more before we take more scans. I just really hate everything about this stupid C word. A lot of my family members are latching on to the whole pink breast cancer thing and I have gotten to the point where the color pink makes me sick to my stomach. I can only imagine how my mother and all you strong ladies are doing it. i am not even the one fighting this beast and i can't seem to get off of this roller coaster that is spinning out of control...
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Thanks for posting your mum's cancer story here Lostdaughter.
Some of the group here have Stage IV experience and will likely respond. For help for you, there is a Stage IV family/caretaker forum: https://community.breastcancer.org/forum/144.
Good luck supporting your mother.
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POST OP, CHEMO ETC.. . WHAT NOW?
Hi all. . Cannot seem to work out how to start a new post. . So chose one and am replying but really wanting to ask about what follow ups I should expect? IBC diagnosed Dec 2015, 3 months chemo, mastectomy and 19 nodes removed. Radiation. And now. . Don't seem due for ANY follow ups except perhaps a mammogram on remaiNing breast. Seems a bit odd given how the threat of secondaries seems the big worry here. I live in new Zealand and went down the public health path initially but now in a position to go private if needs be. Can anyone tell me their own experience of what tests they had after radiation so I have some idea of what to ask for in this second world health system? Or is this 'wait til something goes wrong ' approach standard in America too?. Somehow I doubt it!
Also started having odd pains on scar site and wondering if this could be recovery of nerves 5 months later? I guess I should ask doc but seriously don't know how to access the oncologist. Or would it be surgeon? Still feel so ignorant of system after ten months of it!
Thanks for reading.
G rose ☺
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Hello GeraniumRose. Sorry you have to be here but welcome. I didn't see it in your signature. Are you triple negative? I am, and other than 3 month follow ups with my MO, and 5 month with my surgeon and radiologist, there is nothing scheduled as to further treatment. . I will only have scans if I have symptoms. Since I just suffered a mild stroke and had scans, I'm clear at least for a year I think.
If you have hormone receptors in your tumor then others can chime in as to follow ups and other treatments.
My Dr's have told me to recover, have my usual dr visits with my primary care physician. Oh and now onward to living life.
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GRose, welcome. Your question is a common one on BCO. Where I am, biannual trips to the onc and/or breast surgeon are standard follow up with scans only if you report symptoms. Are on hormone blockers such as Tamoxifen? Or AIs? If you can get your medical treatment details into your signature people here with similar diagnosis/treatment will likely chime in.
As to pains in your scar side, these are very common for months afterwards given the nature of the surgery. But your breast surgeon would be the best person to consult on this.
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Hi everyone, saw my oncologist today. So my treatment plan now that I have recurrence so soon after diagnosis is to go on TDM1... Kadcyla once every 3 weeks. Hopefully this will get the skin mets under control. So radiotherapy on hold for the foreseeable future.
Feel better now I have a treatment plan. Hope you all doing ok. It's such a rough roller coaster at times.
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Thanks Traveltext, and for posting the links. I am reading up about my new treatment and yes, thankfully, it shouldn't be as gruelling as the docetaxol. Having lots of visitors at the moment so enjoying my altered life.
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Good luck with your infusion Hydranne.
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Hi Hydranne, just back from echo cardiogram and CT scan, had bone scan last week so hopefully see oncologist next week and start Kadcyla on the 20th of September. I had Herceptin and Perjeta treatment but that's being discontinued. I found them much easier side effects wise than when I had them with the docetaxol.
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Haven't been on here a long time but with my seven year anniversary coming up, wanted to give a positive outcome story! I was Stage IIIC with multiple node involvement, 9cm tumor. After chemo , double mastectomy, complete node removal in right side, radiation with second degree burns and a year of herceptin, here I am. My doctor gave me a two year chance, that was in 2010! I do have neuropathy and a few other side effects but I'm dealing with that. Just wanted to put my story out there
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Thanks so much for coming here and posting Missy80129.You give us newbies hope.
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Hey all, it's been a while since I was here thanks to some confusion with my dx. Had mastectomy first when should have had chemo, then rads then mx as normal practice. Long story short, turns out I had the mastectomy since the IBC was dx while doing the biopsy. Finally got all straightened out my my onc a while ago. Wanted to say was sorry about Purple, sorry to hear about your stroke Valstim and your prostate cancer Travel.
minimoocher, I am also sorry to see you joined the Stage IV club as I did not too long ago. I am glad to hear that you are getting Kadcycla and hope that destroys the little bastards in your skin.
For myself, I had one met in my brain. Had some partial seizures that I confused with vertigo since I did not lose consciousness. They started happening more often. Finally on the 3rd trip to ER, a scan was finally done finding the giant tumour in my dura. Luckily, it had not fully invaded the brain. Got some steroids, a craniotomy and have just started whole brain radiation today. Will lose hair but will soldier on with hope. I am NED below the neck for now and am glad for that. Will take it as long as possible.
Hope everyone else gets a decent week as well.
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Thanks for popping in with your positive story Missy.
Good luck with your treatment Mara. Had to google dura:
Dura mater or dura, is a thick membrane that is the outermost of the three layers of the meninges that surround the brain and spinal cord.
I must be pretty dumb, since I had to google craniotomy, too:
craniotomy is an operation to open the skull (cranium) in order to access the brain for surgical repair.
Well, it all sounds doable, so go with the flow and keep in touch.
Mini, just one week till you start Kadcyla. According to BCO his is just the drug for HER2-positive mets, so I'll be sending positive thoughts your way for a positive outcome.
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Hello all,saw my oncologist yesterday. Bone scan clear, echo cardiogram fine. CT scan not back yet but I am to turn up on Tuesday as planned for 1st Kadycla. So I am escaping for a break with my hubby to Wales! Even better we have September sunshine.
Missy, so good to read your post. Inspiring.
Mara, I smiled when I read about the Kadycla blasting "the little bastards in my skin".
Hoping your brain met is brought under control too.
TT, thanks for the positive vibes. I had a great visit from my brother who lives in Bulli, NSW, last week. We had a lovely time and it was good he could see me still upright, breathing, laughing. It's hard when loved ones are far away.
Take care everyone, x
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