Fill Out Your Profile to share more about you. Learn more...

IBC lounge: roll call, support and just a good place to hang out

Options
1235797

Comments

  • meadow
    meadow Member Posts: 998
    Options

    Moreshoes, I am thrilled for your positive response! And thanks so much to Hydranne for putting it in such clear terms.

    Traveltext, thank you for helping rebuild the informative part of this thread.


  • Valstim52
    Valstim52 Member Posts: 833
    Options

    Hello just checking in with everyone. Saw BS today Surgery (full mastectomy) is scheduled for May 24. Any tips? I've read the threads, and have joined the Surgery May 2016 thread. Because I no longer have the redness, swelling or peau de orange he thinks he will get good margins. Always something to worry about..Margins, path report , etc. Then I have rads.

    Val

  • mara51506
    mara51506 Member Posts: 6,172
    Options

    Best of luck on the surgery. Biggest things that come to mind for me when thinking about the surgery. Do any range of motion exercises they give you for your arms. It is amazing the difference having a mastectomy does with reach etc. They saved me a lot. I also enjoy stretching my arm out front too. Keeps it flexible and less pain while healing. Try to find a camisole that has pockets for the drains you will have. That was my biggest annoyance after my mastectomy and I only had one of them. You have done what I personally see as the hardest thing which was chemo and I am sure all will be well for your surgery. All the best to you. I have not been reconstructed so not sure to say for that. I plan to go flat when I am fully finished my active treatment. Still on Herceptin til Sept/Oct. Good luck with all.

  • peckjp
    peckjp Member Posts: 11
    Options

    hi Valstim52. Had a modified radical mastectomy (total) in October. Recovery at hospital takes a few days unlike the 23 hr gig for a simple. The great thing is it's cut out. They should give you plenty of attention and pain relief after. I'm assuming you're also going to have a plastic surgeon to do the repair work. I had a very large area taken. The surgeon found 34 cancerous lymph nodes. Yet today, thanks to a great team and radiation, I'm cancer free and so far no lymphodema. Try to go to occupational therapy before radiation. I muscle moved from my back to my front to replace the gap. You get pretty stiff and having stretching exercises before radiation was like warming up as an athlete

    Also know what you'll be going through is understood by this online gang but not all BC patients I didn't know I was to have a total mastectomy until my original surgeon admitted I was beyond his skill set.

    Like noted above,the whole package is the only way to beat IBC And a simple mastectomy is not in the cards My lesson learned, deal with specialists not generalists

  • mara51506
    mara51506 Member Posts: 6,172
    Options

    I should also mention that this would be goodbye on my end. Turns out after pinning down my MO and RO during the last visit to the cancer clinic that surgery was done because I apparently did not present as IBC. I got angry at being told this was what I had by both the BS and MO but can't do anything about it. I will still be around but will no longer be here. Good luck everyone still in treatment.

  • peckjp
    peckjp Member Posts: 11
    Options

    Mara. Saw your DX. Did they miss the IBC in March or did it pop up that fast?

  • peckjp
    peckjp Member Posts: 11
    Options

    Mara. What do you mean by being around but not here?


  • peckjp
    peckjp Member Posts: 11
    Options

    Mara. Find another surgeon and oncologist. I was told similar and found a surgeon who would do it It's not easy and you need a specialist. My original surgeon would not do the surgery. Not sure what you have access to in Canada. Here in Cleveland we are fortunate. Two good systems.

  • PurpleMinion
    PurpleMinion Member Posts: 110
    Options

    I think Mara is saying that her doctors decided that she didn't have IBC after all (which frankly, is good news for her). Mara, thanks for hanging out here for a bit and we wish you the best of luck!

  • traveltext
    traveltext Member Posts: 1,053
    Options

    Actually, I think mara is upset because she wasn't correctly treated for IBC. She had surgery before chemo and this is not the right protocol.


  • mara51506
    mara51506 Member Posts: 6,172
    Options

    Actually Purple Minion is correct. I was told I had IBC before my mastectomy. I had the peau d'orange look and the inverted nipple. That came up in the couple of weeks before surgery. It was my BS that told me it was IBC which still confuses me because if he thought I had it, why did he do surgery. Since I will NEVER get an answer and have responded well to treatments so far, I am working to let it go. When I was told the cancer was invasive after my mastectomy, the diagnosis was never clarified to me and I just assumed (bad to do I know) that's what I had. The only reason I know differently is I asked both my MO and RO why I had surgery first since IBC is treated chemo first and sometimes after mastectomy. I am glad I don't have it. Still stage 3B, still grade 3 so was agressive and am still doing Herceptin. My treatment is appropriate for NOT having IBC. I am definitely not out of the woods with Her2 positive. It was this topic that got me thinking and questioning more. I DON'T have IBC and feel like I should go to topics that fit me instead of intruding here. I wish everyone the best of luck. Valstim, good luck on your mastectomy and everyone who is in treatment, I wish you well.

  • peckjp
    peckjp Member Posts: 11
    Options

    Mara - what a great relief. Good Luck to you.

  • Valstim52
    Valstim52 Member Posts: 833
    Options

    Mara good luck. Peck, yes they told me from the beginning I would not be having a simple masectomy That Ibc requires they take it all

    Someone correct me if I'm wrong but isn't ibc more a clinical diagnosis? The look of the breast? Nipple etc, and you can have a lump as well? I did, along with some of the IBC symptoms?



  • MoreShoes
    MoreShoes Member Posts: 179
    Options

    Valstim, thank you for asking these questions. I'm also interested in the answers. I don't know when exactly but I'll have a double mastectomy in May. It's school vacation here and the docs are on vacation!! Now I worry cause I have a swelling at the collarbone. I'm afarid that the cancer in the neck started acting up. I'll call the hospital tomorrow and see what they'll say. I hate it.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    Options

    Hydranne, my own presentation was a smallish circle, about 3" in diameter, of peau d'orange that was an "umbrella" over a very small solid tumor of IDC. The peau d'orange skin had tumor emboli in the lymphatic channels and cancer was found in multiple nodes. The solid tumor showed up on scans, the skin umbrella did not. My surgeon called it IBC. My oncologist said nope, it doesn't meet ACS clinical criteria for IBC. When I asked why not, she said "some things are simply a matter of semantics."

    My treatment was the same, no matter what we called it. High-test chemo, mastectomy, rads, more chemo.

  • meadow
    meadow Member Posts: 998
    Options

    Thank you hydranne for the above information. Hello to all!

  • traveltext
    traveltext Member Posts: 1,053
    Options

    Good post Hydranne. Hi Meadow, You two and others from the old "This Ain't Facebook" topic might be interested to read the only pages captured in archive.org, aka The Wayback Machine, the digital memory bank that records pages that have disappeared from the Internet. The other 80 pages weren't recorded, so are lost, which is too bad.

    Page 2 HERE

    Page 3 HERE

    Page 5 HERE

    Page 7 HERE

  • peckjp
    peckjp Member Posts: 11
    Options

    I'm still trying to get my arms around IBC. You all on this post seem to know so much. It's very helpful and frankly comforting to hear from others in the same shoes. Few BC patients understand the difference we are dealing with. When a doctor is dealing with something so rare (4,000 out of 250,000 of BC are IBC annually) they should be required to move you to a specialist. In my case I was fortunate to have access to specialists (especially the surgeon) and my situation went from hopeless to hopeful once I took the initiative to seek advice from specialists. IBC needs its own code so the protocol with insurance can be set up differently. PET scans not CT scans need to be in the mix as IBC is in the tissue and not a lump/tumor. There are currently 17 studies being done on IBC 5 at mdandersen and 4 a DANA Farber.

  • MoreShoes
    MoreShoes Member Posts: 179
    Options

    Hydranne, Traveltext, Peckjp thank you all for the great information you provide. (Hydranne, thank you for putting my scan results in a beautiful mathematical way :-)

    I really don't know what's happening with my surgery. Everyone is giving me different information. MO said: DMX, get rid of the lymphnodes in the armpit and neck. MO in the specilized hospital said: DMX, radiation for the armpit and neck. Today the nurse was telling me about the team discussion: left breast MX, the right one can stay.

    I'm confused. I've tried to arrange for an appointment with the specilized hospital and discuss once again the options. I saw in my online file what they suggest and it's different from what the local hospital is suggesting. It's about me and my body so I won't sit back and wait.

  • traveltext
    traveltext Member Posts: 1,053
    Options

    MoreShoes, could you detail your treatment to date from your previous DXs. That way we can understand what's happened to make comments that may help you decide what's best for the future.


  • kicks
    kicks Member Posts: 319
    Options

    I have seen it said that IBC is a 'clinical DX' - not what I was told by my Drs. The Radiologist who did my new mammo, US, and biopsies told me he thought IBC but could not state a DX until he had the path. report on the enlarged lymph node and a 'suspicious' area the next morning. At 8 the next morning, he called with the path. report - IBC.

    'Rash/redness'/skin issues are not how IBC always presents. Mine first presented with an enlarged lymph node under arm. I never had a 'rash/redness' but did developed peau d'orange in the 17 days between DX and starting neoadjuvant A/C.

    iBC is unique. IBC is rapid in presentation/progression while it is possible for other types to have been present for years. IBC forms as a 'nest' or in 'bands' which have no clear margins. Neoadjuvant Chemo is done to get the area to shrink and form into a 'lump' with margins. Neoadjuvant chemo is done to shrink the cancer and get it to form into a 'lump' with margins as opposed to a 'nest' or 'bands'. I did neoadjuvant A/C hoping to get the 'nest' to shrink and form into a 'lump with good margins' so surgery had a good chance of cutting it out. It worked as planned - it had shrunk/formed into a 'lump' with good margins for surgery. Then after surgery, I did adjuvant Taxol to attack any cell(s) that might still be lingering. Then did rads as another backup. Worked for me - 6+ years and still NED.

    As IBC is rare there has been such little research done - unfortunately that means that there is no definitive 'answers' as to what 'it' really encompasses. 'It' can present so differently and respond differently - if/when actually researched and information is gotten, there is a large possibility that 'everything' being lumped together today as IBC is actually not all the same.

    The time someone will spend in the hospital after a mod. rad. mast. is not set by the surgery but by how the individual reacts/responds to the surgery. I had a mod. rad. mast. one morning and went home the next morning and definitely was ready to go home. But, of course, for others more time may be needed/imperative. Also different Drs have different 'ideas' of what is appropriate. I had read that had to have button front shirts to be able to put on after surgery so I took a button flannel and a zip hoodie with me to put on to go home. Wrong - did not need them at all. Had no problem putting on the shirts I had worn in - my 'winter uniform' of a pullover turtle neck and a pullover sweatshirt easily. I also walked out of the hospital on my 'own 2 feet as I had walked in. Hospital policy necessitated an RN go with me and take a wheelchair 'just in case' and to varify that someone other than me (Adult Son) drove me off of hospital grounds. There was no problem of not having more than enough pain meds - I tried to get the morphine drip stopped before it was (at midnight) to no avail.

  • Milwmama
    Milwmama Member Posts: 84
    Options

    Kicks-May I ask how long it took to get your arms over your head? I am to have radiation after surgery and trying to guesstimate what I'm looking at. Thanks.

  • Valstim52
    Valstim52 Member Posts: 833
    Options

    Does anyone know how long after mx you start rads? I met with RO early on in the process.

  • traveltext
    traveltext Member Posts: 1,053
    Options

    Valstim52, the time between mx and rads will depend a lot on how quickly you heal from the surgery. I had a nasty seroma that took a few weeks to go down enough so that the rads (which depend on accurate, acute angle rad beams) could be properly delivered. I was close to my perceived outside time limit, but the treatment has worked for me to date.



  • Valstim52
    Valstim52 Member Posts: 833
    Options

    thanks traveltext. Not sure how fast I'll heal.

    Milwmamma, I'm wondering the same thing. Was told to get button front shirts, and a shirt to hold drains etc? That I would be in hospital a few days, etc.My BS says 2 days.

    I had a lumpectomy (other breast) 24 years ago, and it was like not having surgery at all, except for the nodes being taken. That hurt worse than the breast surgery. So, I'm wondering as well . Especially the lifting you arm etc..

  • kicks
    kicks Member Posts: 319
    Options

    My TX was different than most other IBCers as I did both neoadjuvant and adjuvant Chemo while most will do 2 different Chemo neoadjuvant.

    I started rads a week after last adjuvant Taxol . UMX had been 2 weeks after last neoadjuvant A/C. Started adnuvant Taxol 3 weeks after UMX. Started Femara (it was not yet available in generic form - letrozole - then) a week after starting rads.

    I had no problem with getting my arm up to where the rads machine could get a good shot at my axillary and a bit around to a small part of back. They did pad under elbow a bit with towels as it was more comfortable that way. Even with the 'head pillow' I had to have neck support (towels) to be comfortable thanks to the upper back arthritis. Bottom line is if you are uncomfortable - tell them - THEY need to AND can make you comfortable even it takes a few more minutes.

    As I said, I had no problems putting on my pullovers the morning after surgery - probably at least 75% ROM. I never saw a PT to 'work on' ROM as I always push myself to move. In fact, even after wrist surgery I never saw a PT. Dr suggested I see one but my LET guy said NO - she'll do better than any PT can do - he knows me well.

    I would suggest to all who are looking at surgery - before surgery be sure to get an appt with a LymphEdema Therapist (not just some PT who claims they "know everything" about LE. An LET which will be either be an OT or a PT but with education in LE. This will give you a baseline and education about LE. Unfortunately - many/most Drs really have no clue about LE.


  • traveltext
    traveltext Member Posts: 1,053
    Options

    Two more things on rads. Common for IBC rads, and used on me, was a bolus (read about it HERE). This item lays on your chest and concentrates the rad beams closer to the skin. Obviously this is best for IBC patients. Second, you could ask if they will use a plastic film with the trade name Mepitel, which is fitted before you lay down for treatment, and which reduces the chance of radiation burn. It was used on me and the results were amazing according to the radiation oncologist.


  • meadow
    meadow Member Posts: 998
    Options

    gosh, thanks Traveltext! I miss Bon terribly. I just am at a loss about why she was so very upset. Please Bon, if you are lurking here by another name, just join us again. I know some times we get upset, react, then regret. We just want you back, want to be with you in your journey and have you with us on our journeys. I cannot even Private Message you, so my only hope is you may read this post. You have so much to give, you are special. Love to you!

  • Geeper
    Geeper Member Posts: 91
    Options

    Hi everyone- I am sorry! I haven't been on the forum for awhile. I just read the threads and I am glad to hear that everyone is doing okay. I am doing well. I will be having my 17th Taxol treatment on Monday. I am still having minimal side effects with the exception of mild neuropathy. I have been icing my hands and feet, and taking B-complex per MO instructions and that seems to be helping me out a bit. I will have scans in June to check to see if the chemo is working. 

    Scwilly Thank you sharing your story. I am TN and stories like this give me hope. I love your positivity.

    PurpleMinio… It's good to hear that you are stable.

    Hydranne So, glad to hear that you are having surgery on May the 2nd. I hope that the side effects have eased up a bit. I see that based on your signature line you were dx at stage 4 IBC over a year ago, you give me hope. I hope to one day get surgery, when all margins are clear. I am wishing you a speedy recovery. 

    shycat Congratulations on getting your home, how exciting!  

    Milwmama welcome! So sorry you have to join our group. Just letting you know that you are not alone. I was also diagnosed during the holidays, it seems like most of us are diagnosed during the holidays. 

    Sherlocked Thank you sharing.  It is so good to hear positive stories.

    Valstim52 I am so glad to hear that you completed Taxol treatments. Whoo,hoo!!!! I am happy to see that you are moving on to surgery in May and then Rads.  I think that the feelings you are having are normal. This whole ordeal is such an emotional rollercoaster. Sending hugs your way.   

    peckjp welcome! Thank you for sharing your story. I am glad to hear that you are NED. 

    Noor46 so happy to hear that you are NED. Thank you for sharing your story. 

    MoreShoes I am glad to hear that you are moving to the next phase of treatment. Your CT scans showed great improvement.

    Hello Meadow, Traveltext, and kicks :)

  • MoreShoes
    MoreShoes Member Posts: 179
    Options

    Traveltext, I'm trying to save the info in my sig but apparently I'm doing something wrong.

    2008: IDC left breast, 2 nodes affected, lumpectomy, rads, chemo (FEC 6x)

    2012: IDC right breast, 0 nodes affected, lumpectomy, rads, chemo (FEC 6x)

    BRCA1 uknown mutation, got rid of ovaries in 2014

    2015: IBC left breast, a spot in the right breast, 1 node in the right armpit affected, 1 node in the neck, chemo (gemz/carbo 6x)

    I'm not stupid, I also understand that mastectomy is the only solution. I might want to save my breast (whatever is left from it, anyway) but it's not realistic. The confusion is about what to do with the nodes. I go with the specilized hospital which says to do rads. (Although MO said that it's too much rads, so I should have the operation). All the radiologists agree that I need hyperthermia and that would make an eventual reconstruction impossible.

    Thanks for the tips about the rads.