IBC lounge: roll call, support and just a good place to hang out
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Blue22 did the one punch biopsy they did turn out to be effective
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The one punch biopsy before treatment showed cancer.
The one punch biopsy after treatment did not show cancer, but that made me nervous. I didn't understand why they didn't do more biopsies, considering that cutting into skin with cancer is dangerous.
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Missmom79: I guess for legal and insurance claim reasons and so on, your radiologist didn’t perform skin punch biopsy because she is not certified for it, and she was trying to direct you to the most efficient path. A surgeon can do skin plus mass biopsy and order MRI, might have good knowledge and network of oncologists should you need one. If you can, please find a therapist to help you, especially one that had BC before.
Flo80: it’s great to hear you got visible response to only 3x AC. My oncologist was using caliper, but mine looked and felt the same every time, so she had to order MRI and PET/CT to see the progress.
LoriCA: so glad to hear you got the cramps and spasms under control!0 -
Hi Leslie for me when I was getting scanned and MRi suggested for punch biopsy I could not wait and asked my family doctor to do one and she did it but just one. When I saw the surgeon he was the one who diagnosed me with IBC as everyone else said I had IDC. Then my oncologist said and still thinks it’s IDC but they said they will treat me with the same IBC protocol as it involves skin.
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Thank you Leslie and hope Taxol will work too as I still have half the mass left after three rounds. I think getting MRI is a good idea and will ask one for to see the progress
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Lori, I have an appointment with a surgeon tomorrow. Why would they send me to surgeon? I looked him up and he does lumpectomies and core and punch biopsie too. I was diagnosed DCIS as you know. I hope they don’t think they’re just gonna give me a lumpectomy without doing a punch biopsy. But as I was reading through I seen where you said you can have IBC symtoms but another cancer there that is creating it (the symtoms) i mean as far as I know DCIS doesn’t cause and symtoms but somewhere on here I read that a woman had redness of her breast with DCIS. And everywhere my DCIS is located is only where the rash is. It’s been a month and hasn’t change. They should’ve have done the punch biopsies instead of wasting time. It’s creating a panic. I don’t know what the surgeon is gonna do tomorrow. If she would have just done the punch biopsie in the first place then maybe if they found out it was IBC wouldn’t I see an oncologist first
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missmom it is likely going to be just a consult, where the surgeon examines you and discusses your options. You typically wouldn't be referred to an oncologist for DCIS because
it usually doesn't require chemo. Since DCIS does not metastasize, it does not require systemic treatment. You can ask the surgeon about doing a punch biopsy. The surgeon may do it herself or she may refer you to someone.Remember that IBC symptoms typically progress very rapidly. If your primary symptom is the light pink you described in other posts and it hasn't gotten dramatically worse in over a month, it could very well be caused by something else. Discuss your concerns with the surgeon and ask for the punch biopsy so you can get it resolved one way or the other. If the surgeon suspects IBC, she will not want to cut into your skin before you've had chemo to reduce/eliminate the skin infiltration, and she would recommend the punch biopsy. But also no doctor will recommend chemo if they believe it is unnecessary (if biopsies show only DCIS) because chemo is very toxic hard on the entire body.
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LoriCA - copy and pasted from another thread-ok so if any of you have been reading my threads I went for a diagnostic mammo and ultrasound on 8/12/19 and the radiologist told me that had inflammatory breast cancer. Symtoms that prompted me to go was pinkness and thickening. 8/15/19 go in for a biopsy so they can find something invasive. 10 core biopsies and only DCIS high grade 8/17/19. Went and was referred to surgeon who said they were trying to find something invasive to see what is causing my thickness shown on diagnostic mammo because the surgeon said that DCIS does not cause thickening. So on 8/23/19 I have an MRI. They seen a 1cm spot around in the area where the DCIS is. I am scheduled for another guided US biopsie on 8/26/19 this Wednesday under another guided US of the 1cm spot. My thing is if the 1cm spot turns out to be DCIS AGAIN and nothing invasive then what? Because with IBC you have to have chemo BEFORE the surgery and not the other way around. DCIS only calls for surgery and radiation correct? I just don't want them to make a mistake and treat me wrong. And I dunno why the radiologist would tell me that. You can diagnose without having cancer (invasive) under a microscope.
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Missmom I don't know what to tell you. With IBC the cancer cells are in the skin, it is the cancer cells blocking the lymph vessels that causes the symptoms - redness, swelling, and heat. If they think you have IBC I don't understand why they would do another biopsy of breast tissue and not a biopsy of your skin. The standard is to perform a minimum of two skin punch biopsies whenever IBC is suspected to confirm the presence of dermal lymphatic invasion.
Skin thickening can also be caused by non-IBC locally advanced invasive cancer (LABC) - with IBC the skin thickening tends to be diffuse, covering a large portion of the breast. Skin thickening and redness caused by LABC is focal, in one area near the tumor. So while skin thickening and redness is a primary symptom of IBC, IBC isn't the only thing that can cause it (there are benign causes too, but since you already have a diagnosis of DCIS we'll leave them out).
If they don't biopsy your skin and the biopsy shows dermal lympatic invasion of cancer cells, it's going to be a judgement call on the part of your doctors based on clinical symptoms because you won't have pathological confirmation of IBC.
You said the pinkness is going away and that's a good sign. IBC typically progresses very rapidly and the symptoms wouldn't ordinarily go away on their own.
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Lori hope you are doing well. I am getting some needle like pain in my non cancer breast and also if I press on the side I feel a little hard thing but not sure if that’s the bone or the glandular things in the breast. By pressing it hurts hard. Few weeks back I had itching in the same breast and a red spot which went away. Being on chemotherapy I feel weird psin
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Hi Flo, I am feeling much better because the muscle relaxers have done a good job of reducing the muscle spasms, and that seems to have eliminated the daily headaches. It's good not to feel like a painful pretzel knot all day long! Thanks for asking.
I used to get strange pains in my left breast during chemo too, and I thought for sure that the cancer had spread there, but there were never any cancerous masses in that breast. I never found any good explanation why I was feeling pain in my non-cancerous breast, but chemo damages healthy cells too, and depending on the chemo drug it also causes (usually temporary) nerve damage. Neuropathy in hands and feet is the most common, but nerve damage isn't always limited to just hands and feet, so strange pains could be nerves reacting. All of my scans showed that everything was normal in that breast despite my fears. If the hard lump you feel is a swollen lymph node, it could be your body fighting the cancer.
I think we become hyper-aware of every little sensation in our body when we are first diagnosed and start chemo, at least that's how it was for me.
What chemo are you on? How many more rounds do you have to go before your next scan?
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Thank you so much Lori. I am so happy that you are feeling much better now. I have just become crazy these days and any pain I get makes me worry. In my cancerous breast I still have pain in the tumour area and the normal breast seems to be okay for a while. I have finished 4 rounds of dose dense AC chemotherapy and will start 4 more rounds of Taxol. I have four more rounds of Taxol before they do another scan before surgeryIt's always so nice to hear from you and thank you so much for taking time and replying to my posts and that too in so much detail. Thank you so much once again. They will do a scan only after the chemotherapy
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Dear Flo80, my wife also had pains when her main tumor was dying very quickly, also on some days she had it in another breast...
Dear Lori, I am so sorry you have to go through all these cramps in addition to everything else but your awareness and knowledge are exceptional, you shine here, you are the one to beat it all, I absolutely feel it. Please know we are all here with you. I want to post here more often but usually I just run run run, so spend my free minutes simply looking at the sky and dreaming...
So for the news, my wife healed super-well after mastectomy (was performed on 22nd of July), the surgeon said that although margins were slim (pathology report, they found a 9 mm tumor and the skin around aureola was also cancerous), surgery went well. Now we had to fight for radiation: although we were referred to radiation department for consultations, the head of it demanded that we first do inner organ MRI to prove that there's no progression. I was mad because last MRI was of June 6th, so pretty recent, and another one was foreseen only in the middle of October. In the end we did not want to argue, payed 250 Eur, had an MRI in another place, then had 2 days of scanxiety, and after these 2 days were back in radiation department with the MRI report saying NED! They were a bit shocked to see us come back so soon:) but everything went fine and today my Sandra already had radiation planning which will start on the 9th, i.e. in one week. Let's hope everything goes well...
Sincerely, Saulius
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Saulius I'm glad to hear that she has healed well, but sorry that you had to fight for radiation and pay for another MRI. You may remember that I had radiation only after my IBC recurrence was proven to be chemo-resistant, and I too had to have back-to-back scans to prove it so I understand the frustration. NED is wonderful news!!
Radiation isn't easy to get through, especially if they use a higher dose than standard like they often do for IBC, but hopefully it will kill any stray cells left after her surgery and she'll be NED for many years to come. Best wishes to both of you!
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Wow, Lori, thank you so much... I am the person who usually smiles and is happy but I am not today like I used to be (which I hate) after very hard past two years. But your message made me so happy and I am smiling! Yay, we take your future plan you painted for us!:)
On the other hand, being sick and tired, stage IV people have to go through corridors, have to open 10 times more doors to get something that "early stage" people get so easily - this is so frustrating and so crazy:/ Every time you go somewhere, you once again have to prove that you are "eligible" for this and that. I am so tired of this. The system does not work for us, it works for itself...
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Saulius I'm so sorry that you are going through a hard time right now and I'm glad I could make you smile for a moment. I understand how frustrating and tiring life can be at Stage IV, it can really wear you down and sometimes it's hard to find the strength to keep going, but somehow we keep finding a way to do it. Your wife has many positive things going her way - she had a good response to chemo, surgery went well and she healed well from it, and most importantly, she is currently NED which is a major accomplishment after everything she's had to deal with. Everything is going her way right now, try to embrace all of those good things. Stay strong my friend, hugs to both of you.
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I think I had mentioned that my last two PET scans showed an increasing number of lymph nodes throughout my body showing metabolic activity, and my MO was hoping it was just my body fighting the cancer. Well, the supraclavicular node on my non-cancer side has been very swollen for over a week now (big enough that you can see how swollen it is without even having to touch it) and MO now believes it is the cancer spreading through my lymph system, so we're scheduling another PET scan to see how extensive it is (and see if it's spread anywhere else we're not aware of yet) and decide if we can treat locally with radiation or if I need to try another chemo drug.
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That's crap news, Lori. How long before you'll have a plan do you think?
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It's not unexpected TT, we've known all along that rads was only moderately successful and that my treatment would have to change soon anyway. The number of lymph nodes showing metabolic activity has been drastically increasing with every scan, so I wasn't surprised when the supraclavicular swelled up. I'm only on Herceptin/Perjeta right now, and all of the new mets are resistant to it (while all of the old mets are still resolved). I think we've run with Herceptin for as long as we can because the cancer keeps popping up in new places.
Will probably be a couple weeks before I know for sure. waiting to hear from imaging center to schedule the scan, I have my echo this week too, after PET scan report is in I need to schedule consult with RO and then MO. We're not in a huge rush this time because the nodes aren't symptomatic, so it's not affecting my QoL yet. If the tumor messing with my brachial nerves is larger than it was in June (which I suspect because of the numbness in my hand), or mets have popped up in another organ, will likely have to do chemo instead of rads. Kadcyla is Herceptin with a chemo, so if my echo is good that's what would be my next line.
Just frustrating that some of my cancer responds well to Herceptin, but resistant mets keep popping up even though biopsies say it should respond to HER2 treatment. And of course the scary part is that cancer spreads through the body in one of two ways - either through the blood or through the lymph system. Having cancer in the lymph nodes throughout my abdomen increases the likelihood that it wlll spread to another organ like my lungs.
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I am so sorry about this Lori and I hope and pray that you get well soon
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Thank you Flora! I actually don't feel too bad right now,all things considered. I'm keeping my fingers crossed that we can just zap the pesky node and postpone going back on chemo for another couple months.
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Oh no, Lori, what a crap:/ Do you think it is worth to wait or better try TDM1 asap? Maybe to go for another opinion? I know it is a huge dilemma but... big big hugs, Saulius
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Saulius, if we can treat it locally and postpone moving to TDM1/Kadcyla for a few more months, that would be my preferred option. Once I move on to Kadcyla I'll be on chemo for the rest of my life with no breaks, not something I'm looking forward to. Herceptin is much easier to tolerate.
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Pesky node, begone! Crap, Lori, I'm sorry about this new development. I know you're fed up with scans, tests, imaging, bla, bla...Gentle hugs, friend, and prayer that all you need is a concentrated beam of lightning to make this go away.
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Haha, yes this past year has been very trying, and tiring, for me. Playing whack-a-mole is starting to get old, I was thinking to myself this morning that I'm starting to feel like I'm on a hamster wheel. But the truth is, I'm really in good shape for someone who has as much active cancer as I do, and I'm very grateful for that. My metastatic support group friends have less cancer but are in worse shape, some of them much worse, so even though it can be tough at times, I am very happy with the way my MO has been managing my Quality of Life. Now that the cramps and spasms are under control, the daily headaches are gone, and the fatigue has greatly improved, I am feeling "almost" somewhat normal. Just really sucks that I'm finally feeling okay again for the first time in a year, and now here we go again....hahaha!
Thanks for the hugs and prayers SB!
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I just wanted to make sure, guys, that I don't have IBC. What they called it, I guess, is a rare presentation of mets to the skin, confirmed by incisional biopsy, below my breast and another biopsy in my neck. But they sure look angry and red sometimes. I failed Ibrance inside of three months. It's in my bones, too, and also my liver although she neglected to tell me that at first. "good news', she said, 'it's only in your bones and skin, neither of which can kill you!' .....Hmmm.
They are as big as the tips of my little finger, and the first started on my neck, like an ugly necklace you couldn't take off, and where the bra goes around you. And on my labia. and in my axilla and on my anus. And on my shoulders. pretty much wherever you would find a bunch nodes, too.
And about a month ago, I asked her if these little bumps around my eyelids / eye sockets could be metastasis's, she barely looked, barely ran her finger over them and said no, not possible. Well, I felt better when she said that. Until I finally got to see my eye doctor. I am getting 'frozen eye' from mets there. He was great, and his assistant found and made me an appointment with an 'ocular oncologist' for the ninth of September.
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Hi Tomboy! Yours definitely sound like skin mets that can result from advanced breast cancer, not IBC, mainly because IBC starts in the dermal lymphatic system of the breast before spreading to other areas. The fact that yours started below your breast and on your neck, and aren't on either of your breasts, points toward typical skin mets, which is really just the cancer breaking through your skin. Also, IBC wouldn't typically appear as nodules they way that non-IBC skin mets often do. There is a thread for Skin Mets in the Stage IV forum, and you'll see that there are several people there with non-IBC skin mets.
There are quite a few research articles that say 20% of all people with metastatic breast cancer will develop skin mets. Also the research I've done suggests that especially in HER2+ people, the skin is an "immune privileged sanctuary" for cancer cells, and there is a barrier similar to the blood/brain barrier so most chemos can't get at them in the skin. I noticed that everyone on the Skin Mets thread was HER2+, which is why I started looking into why so many HER2+ were developing skin mets.
You really have my sympathy. skin mets on the breast is bad enough but you have them in some really horrible places. I can't even imagine what you are going through. And F the doctor who said that it's good news because skin mets can't kill you. Skin mets are the one of the most emotionally horrible types of mets to have because they are visible and deforming. I'd smack any doctor who tried to tell me there was anything good about it. And one of the biggest worries with skin mets is that if/when they ulcerate (fungate), they are highly susceptible to infection, which can kill you.
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Dear Lori, I can for sure understand your concerns regarding TDM1. You know more than I do about this drug, so I am confident in your decisions. Sure, if local treatments are available, they mostly will be easier than systemic chemotherapy. I am praying that you can fix this quickly and go on for much much longer than few months with H/P. Saulius
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Dear Lori, Tomboy... I sometimes also suspect my wife had skin-mets on her breast, as no doctors have ever told us or even mentioned it is IBC... sure, both cases are very scary...
Some patients experience very good response to these with TDM1 only (https://www.frontiersin.org/articles/10.3389/fonc.2018.00581/full). As Lori said, I also have an impression from everything that I read, that skin is a place where chemo does not reach very well:/0 -
That's the tough thing about diagnosing IBC, especially secondary IBC since LABC can cause symptoms that are similar to IBC. Unless a punch biopsy confirms that there are cancer cells in the dermal lymphatic system, best they can do is decide that it clinically presents as IBC and treat as if it is to be on the safe side.
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