Oct 21, 2021 10:43AM mara51506 wrote:
Peter, thank you for the info. I have no PCP but will as my MO when I see her on the 3rd.
Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.
Posted on: Mar 31, 2016 03:23PM
Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:
I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.
IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.
Posts 2371 - 2400 (2,436 total)
Oct 21, 2021 10:43AM mara51506 wrote:
Peter, thank you for the info. I have no PCP but will as my MO when I see her on the 3rd.
Oct 25, 2021 04:14PM mamacure wrote:
Oct 26, 2021 07:59AM mara51506 wrote:
I only have one breast left, on the same side as that picture as well. I did not go for reconstruction as I would have had to endure TE expander and that would not be great. I also am unbothered by being one sided. I wear a bra with a prosthetic silicone breast that looks real and that is more than good enough for me. I am fully comfortable going out without the prosthetic as well when I am cleaning the mastectomy bra. I did not have any special closing by a PS either, just what the breast surgeon gave me.
Oct 26, 2021 08:50AM mamacure wrote:
Same with me Mara, left breast gone, no plastic surgeon. I saw this character, Dr Sage on the Simpsons show & it made me smile. One of the writers on the show went flat too. I have been going braless with a jacket. Just got a soft winter vest. Hope everyone is doing well.
Oct 30, 2021 10:14AM - edited Oct 30, 2021 07:05PM by LW422
Hello all!! I'll just bore you with an update. I've completed 4 of my 6 weeks radiation treatment; so far my skin is holding up well and I'm praying that continues. (TravelText...I'm still using the Mepitel!!) I've been plagued with tightness and nerve pain along my surgical scar since the mastectomy and haven't noticed it getting any better or worse since starting rads. (9 weeks out from surgery) Really does drag me down sometimes, though.
Yesterday I saw a PT/lymphedema specialist who did the machine measurements of my arms (volume?). She also did other measurements and determined that I have no signs of lymphedema at this time, comparing those measurements to the baseline I had before surgery. I'm hoping this is a good indicator that the lymphovenous bypass was worthwhile!
She said my range-of-motion is excellent so I guess all those stretches I've been doing are paying off. I must say that after all the discomfort of a single Mx, I'm losing interest in having the propylactic removal of Lefty.
Hoping I can make it through my last 2 weeks of radiation, get healed, and get fitted for my foob. I can't believe it's been 11 months since my nightmare began. How time flies when you're terrified and going through hell, huh?? Thanks to you all for being there for me; I hope you're all doing well. Happy Halloween!!
Oct 30, 2021 07:01PM mara51506 wrote:
LW422, one tip re blood draws, if you only do the right breast and you've had nodes removed on that side, do NOT allow them to do anything with that arm including blood pressure, blood draws or anything with the pic lines. Always use the left assuming you do not have that breast removed. I say this that the risk of lymphadema is years long. I don't allow my right arm to be used except in cases of emergency where they cannot get blood from the left. I've been told by some departments it would be safe but I say absolutely not. In all the years, I had one blood draw but that was it and my mastectomy was almost 7 years ago.
Oct 30, 2021 09:18PM mamacure wrote:
Great tip Mara thank you. I am thankful that I have one good side/arm.
LW, so happy to hear that you are doing well with radiation! You are getting close to being done!
my arm swelled slightly but it’s better today. I have to wear the sleeve & glove all day long. It starts to hurt around the arm pits. Whole arm pit area feels really strange. I have an awesome PT who does lymphatic massage. It feels heavenly. She is in high demand so I see her whenever possible when she has an opening. I was so sad that I can’t do hot tubs or hot springs/saunas anymore since it might trigger lymphadema. I hope this is not true. What about hot baths? My radiologist said these beams can go right through walls!! WTF scary thing to say. I am eager & scared to get started and be done with radiation. Happy Halloween too
Oct 30, 2021 10:13PM LW422 wrote:
Thanks, Mara. The PT/lymphedema specialist gave me the list of "don'ts" for avoiding lymphedema. I'm considering getting a medic-alert bracelet for my right arm but so far, so good. Hope you are doing well these days.
Mamacure--sorry that you are having swelling even with the sleeve and glove and I hope that resolves. Do you anticipate having to wear them from now on? My PT/lymphedema specialist didn't do any lymphatic massage but was focused on "myofacial" massage and trying to loosen my scar tissue. She did show me how to do the manual lymph drainage exercises, though, in case I ever need them.
I am so afraid of lymphedema and I guess we are never out of the woods as far as that is concerned. I also have armpit weirdness; it just feels tight and awful...like something is bunched up under there though it looks pretty normal on the outside. I guess it's just nerve weirdness and the tightness from the ALND.
Radiation is not too bad, at least so far. The treatments don't hurt at all but the traveling to the facility EVERY DAY really gets old. (45 minutes to an hour each way) I'm hoping my skin won't break but I have two weeks to go, so who knows. I remember the chemo nurses coming in to administer AC, in what looked like astronaut suits with face shields while dumping the toxic chemicals into my vein. Well now the rad techs get me positioned for the death ray and then scurry out of the room when the machine takes aim on me and Johnny Cash is singing "Ring of Fire" in the background. Just a day in the life of a cancer patient!!
Oct 31, 2021 04:07PM mamacure wrote:
You are doing great LW! They need to change that music. I heard keeping scar tissue loose is very important, I looked at these bumpy sheets that you can put in your bra or under arms to keep them massaged. My compression sleeve really helped, my arm is back to normal. I have to wear it for 30 days as a preventative measure after surgery. Taking it off at night. After that I plan to wear it at least 3-4 hours a day, while walking, long car rides & flying. If we can catch it early, it’s reversible so I plan to check my arm everyday. I think with your bypass, your chances are very low. I’m wondering did u have to have 6 weeks of radiation even with PCR, because of IBC? Do you have the Mepitel sheet on now?
Oct 31, 2021 04:38PM - edited Oct 31, 2021 05:10PM by LW422
Hey MC... Happy Halloween!! Yes, as an IBC patient I got the full 30 rads, even with PCR. My RO did say that if I had not had PCR, I'd be having 2 rads A DAY for 25 treatments (or something like that). Also, younger women with IBC (under 45/no PCR) get more intense rads. Here's the Standard of Care table for MD Anderson and Dana Farber...
Yes, I have the Mepitel sheet on now; they put a new one on once a week. I don't have any problem with it staying in place, probably because I have a flat area (mid chest) where it's applied.
Oct 31, 2021 08:26PM mamacure wrote:
Thank you LW, very helpful info. I bought 1 sheet from Amazon to get ready. I'll put it on 2 - 3 weeks in and see how it goes. I have in my notes 200 .. Gy! I hope that is not true, I better ask my doc again. Some people do the Canadian method of shorter, stronger sessions. My treatment will be like yours 6 weeks, 1x per day.
Oct 31, 2021 08:35PM LW422 wrote:
MC--I don't understand the radiation dosage "Gy" thing. On MyChart it says my dose is "200 cGy" so I have no idea what that means. Gy versus cGy... ??? Then one area gets a higher dose (where the Mepitel sheet is) and then there are "boosts". I need to ask my RO about that because it says my "boosts" are to the chest wall and I thought they were to the surgical scar.
Nov 1, 2021 05:59AM shycat wrote:
1 Gy = 100 cGy
Nov 1, 2021 04:31PM LW422 wrote:
Thanks, Shycat! I get that, but then I hear stuff like "50 gray" and wonder what the heck that really means. I suppose it doesn't really matter but I try to figure stuff out. Hope you're doing well these days.
Nov 1, 2021 05:46PM Flo80 wrote:
Ladies anyone have experience with a lymph node in the neck that in ultrasound was normal. I have this node which the doctor after ultrasound said nothing to worry . This node has been there now for few months. I feel there is also one more node though not sure if that is a muscle. I go to ER always and get scanned. I don’t k ow the anxiety just kills me.
Nov 1, 2021 06:13PM LW422 wrote:
Hey Flo. Sorry you are still having concerns and I hope your headaches are better. Did your oncologist review the ultrasound or just an ER doc? Have you asked about a possible biopsy of the lymph node? I hate that you are worrying. Hugs to you.
Nov 2, 2021 12:47PM Flo80 wrote:
Hi thank you they did review the ultrasound I got few months ago. The headaches are gone. They said the lymph node does not look cancerous so they were not concerned.
She told me neck nodes are common. I have an appointment next week and will mention it again
Nov 2, 2021 02:45PM Traveltext wrote:
Hey Flo, less worry please. The last of my three annual ultrasound scan checks have shown a dodgy looking contralateral axilla node. They biopsied it the first time (negative) but the last two years it's just been noted.
Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
Nov 3, 2021 10:30AM mara51506 wrote:
I can definitely understand the worry. I have spots growing in my brain. RO unsure if new cancer, could also be scar tissue. Takes me a while to put it in the back of my mind. I am better than I was, walking helps a lot for me
Nov 5, 2021 10:03PM blue22 wrote:
Flo - I get the worry. It never ends. I won't think of cancer at all and then I will have something weird and worry it is much more. I think only people who have been through something like this truly understand.
LW - how is the radiation going? By now you should be someone in the flow of things. Have you made buddies with other women in your radiation time slot? I also used the Mepitel sheets, but I think it might have been a bit closer to the end. I had all sorts of creams, solutions, bandages etc. in the end provided by the Drs. and nurses, even medical grade honey. It was not fun, but you will get through it!
Nov 5, 2021 10:23PM LW422 wrote:
Hey Blue; how are you? I have a week of rads left; boosts to the scar. So far I'm doing OK; just a bit pink and "sunburned" feeling. I'm more bothered by residual surgical discomfort... a LOT of tightness and underarm weirdness that's making me crazy(er). I was hoping that would finally resolve but apparently it's going to take a long time if ever. I've had a couple of PT sessions that didn't really help but I keep working on it.
Hope everyone is doing well.
Nov 6, 2021 08:39PM mamacure wrote:
Hi LW, you are almost done with radiation! I start next week, had to delay simulation due to poor ROM. I hate those zingers in the missing boob area. I over did it with walking the other day and got tired & sore. Otherwise my energy has been good! I am rubbing manuka honey cream on my scars & it smells sweet like honey. My RO is total old school, won’t provide anything except for hydrogel, told me to use ivory soap ( no thank you so drying). Have a wonderful weekend & let us know how you do next week!
Nov 7, 2021 04:28PM LW422 wrote:
Hey Mamacure! Dang, I can't believe your simulation was delayed; work those stretches, girl!! I'm having "phantom nipple" in my missing breast... when I get cold it actually feels like both nipples are responding. So weird. I'd also like to remove my armpit with a kitchen knife but that's another story. (I just know there's a bag of golf balls under there.)
I just have one more regular rad treatment and then 5 boosts. My RO said I could have 2 boosts a day but they'd have to be 6 hours apart... um, no. So I will officially be done on November 15. It's going to feel strange and a little scary to be cast out of active treatment and on my own!!
I hope you are able to start rads on time and that you have an easy time of it. Let us know how it goes.
Nov 7, 2021 07:43PM Flo80 wrote:
I hope you are feeling better Mara. Wishing you lots of happiness and good health. I have an upcoming oncologist appointment and will mention about the lymph node. I feel I have another one below it too. I just recovered from cold. May be there is a relationship, will see
Nov 7, 2021 08:52PM blue22 wrote:
Hi LW - I know the phantom nipple sensation. My MO looked at me funny when I mentioned it. I have it much much less now, but I still sense it from time to time. I remember my RO gave me Gabapentin for the nerve pain and issues, but I felt loopy on it and stopped. I also have tightness and have to stretch and massage daily, otherwise it gets much worse. My husband is always worried I will start massaging my chest while on a work Zoom meeting! I think I did not jump soon enough after radiation to do physical therapy... partly was thanks to Chemo Brain making me forget, and then Covid hit.
Flo - the worry... days go by and I am fine, I don't think much about cancer, and then something feels off and I don't know what to think. It is frustrating, it is depressing. I know we are all at high risk and sometimes it just feels inevitable. But I am in a better place now than maybe a year or so ago.
Nov 8, 2021 08:08AM mara51506 wrote:
Yep, I am feeling better. Realizing that part of the issue for me is the Herceptin gives me a very drippy nose and I also have 2 cats. Does not matter the dusting, vacuuming, steaming of the bed linens, they also cause some nose dripping. Thank goodness no carpet here. I thing the postnasal drip is a lot of the throat issues, my oncologist was not worried about it at all. I do feel better and will walk in the fresh air as well.
LW422, it will be scary I imagine to be off all treatment but celebrate it, go day by day. Realize you've been through a grueling treatment plan over a long time and look forward to some time off and feeling better once everything is done. Fill your days with pleasure after all the appointments with rads are done, maybe a really nice dinner somewhere or really good delivery food to celebrate. I imagine in some ways it is normal to worry about recurrence but spend all days until told otherwise doing what you could not while being treated and surgery and everything.
Nov 8, 2021 04:59PM - edited Nov 8, 2021 05:06PM by mamacure
LW finish strong! Hope your arm pit will feel better after radiation. Imagine all the free time away from driving to MDA!! I like Mara's advice of enjoying day by day.
Anyone else’s bladder shrink after chemo? I used to be able to hold it all night but nowadays, have to wake up early to go. Maybe just getting old…