81-year-old MIL waiting on biopsy results
First, I want to say that I found this wall and am so thankful for the caring and sharing I've read in the posts. My family was rocked last week with the probable diagnosis of IBC in my 81-year-old mother-in-law.
After years of trying to talk her into moving in with us, she relented last April and I'm kicking myself for not getting a better handle on her medical history. I first became aware of her breast complaints around Thanksgiving when I took her for a routine check-up and she told me I could wait in the lobby (I usually go to the exam room with her). She came out with a prescription for antibiotic ointment and said "I was hoping I wouldn't have to tell you...but I burned my breast in the shower several (6) weeks ago and it's infected..." I questioned whether or not our water was actually hot enough to blister her, but she was insistent that it was a burn so I dropped it, got the antibiotic ointment Rx filled, and she started trying to heal it. A few weeks later, when she ran out of ointment and needed a refill, she said that her doctor wanted to get a mammogram when the "burn" cleared up.
Finally, she felt the "burn" (that I still had not seen...another thing I'm kicking myself for...) was healed enough for the "routine" mammogram so we called the doctor to make the appointment. She had to wait a couple of weeks for what ended up getting called in as a mammogram AND ultrasound...and that was my first red flag. I asked her if she had a history of suspicious mammograms and she said no. She keeps files of all of her medical records so I asked if I could go through them...and sure enough, she's had calcifications for four years with a birads of 2 in November of 2010.
She had the mammogram and ultrasound two and a half weeks ago, and last Tuesday she got a call that the reports were back and both were suspicious for inflammatory breast cancer. I started researching and saw that it's very aggressive and fast growing, and started counting backwards to the beginning of her breast complaints (the first of September) and rushed her through the system, seeing a breast surgeon two days later (Thursday). He was great (Ron Lewis, Gainesville, GA) but the minute he started questioning her about the "burn" I knew it was going to be bad. She opened her gown and when I saw her breast (for the first time), I was sick. It had all the symptoms I spent the night before researching about...redness, swollen, lesion, inverted nipple, etc. Her poor breast looked like it had gone through a meat grinder. The surgeon was immediately concerned and did several punch biopsies and an excision biopsy. And now we're in the wait mode.
The first wave of results will be back by Tuesday and in his words, "...expect to confirm...what I suspect is IBC..." The full results will be back by the end of the week and she's scheduled to see him again on 2/14 to find out what's what, and what can be done. He said he felt confident in his diagnosis and was going to schedule her to see an oncologist the same day so treatment options could be discussed.
So why am I posting this? I guess I want someone to tell the future for me. Of course, I know that's not possible, but I don't have to tell you ladies what it's like to wait and wonder. I'm hoping the surgeon is wrong, but he has a very good reputation and he was very sure of himself. My husband has MS and I started a new job last May so have to be careful how much work I miss. I want to give her the support she needs, and am afraid. Afraid because it went undiagnosed for almost 5 months...which seems like an incredibly long time for IBC. Afraid because she's 81 and may not be strong enough to withstand treatment. Afraid because I'm the only one in the house working and need my job and don't know how I can work and take care of two invalids.
Please keep us in your prayers as we wait on the verdict and figure out how we're going to get through this.
Comments
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Biddy I am sorry that you and your family are going through this. You are in my thoughts.
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Biddy, if it is IBC, the main thing to remember is that CHEMO COMES FIRST. In other types of breast cancer, surgery comes first. There is plenty of information about IBC on the Inflammatory Breast Cancer Foundation website (www.eraseibc.com). There are also older women (I'm almost 70) on here, and I went through treatment for IBC at age 65-66. Today I'm NED (no evidence of disease or no expiration date) and hope to stay that way for many more years.
You might want to check with friends and other family to see about getting their help in getting your MIL to doctors' appointments, etc. You will definitely need some help. You and your family will be in my prayers, and I'll be glad to answer any questions I can when you have them.
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Biddy you MIL is lucky to have you on her side. I would be asking the "doctor" who gave her the antibiotic cream "did you look at her breast?" (Shaking my head...sorry).
Claudia is right, Chemo first. It also shouldn't take over a week to get biopsy results..*IF* it is IBC she needs treatment ASAP. Let's pray it is not.
Patti Bradfield
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Biddy,
Just want to let you know I will be praying for you and your Mother-in-law. I had surgery 1 year after being stable. I'm ER+ and on Zometa for the bones & Femara. I'm doing well and hope your Mother-in-law does well also.
Terri
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I am sorry to hear this story. The first thing that comes to my mind is that she may not want treatment. With her breast being that bad, the doctors had to of told her what they thought and she just didn't tell you. My parents are like that and that is something they would do. My mother is 65 and will not do chemo. It is in her living will that she made 10 years ago.
The doctors are usually correct in the dx without test results in a situation like this. Sounds like the surgeon is on top of things with having her go see an oncologists right away. That means he has chemo in the plans asap. She may also need a pet/ct scan to see if it has spread and to see if chemo shrinks the mets. If it doesn't, then they change it. Tumor markers will also probably be done. Don't look at the markers for the first 6 weeks of chemo, as they can be fasley high because the body is getting rid of dead cells.
I am 48 with ibc and not doing well. I think the older your are when you get dx the less aggressive the cancer. I also hope she comes out ER+, there are a few medications for that with little side effects compared to chemo.
I can also understand the need to work and pay bills. Maybe they can make the appointment in late afternoon or early morning. When I had radiation, I went after work and did not miss any time.
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Biddy, I'm sorry that your MIL and your whole family are faced with this, and all the practical issues around the possibility of a diagnosis. Looking at the Paying for Your Care section of the main Breastcancer.org site, among the resources listed was the local offices of United Way and the American Cancer Society. A search at the ACS site for the keyword "transportation" turned up information from many states about free transportation to treatment. For example, this one from California.There are also local service organizations, church and other faith-based groups that offer help.
The social worker or nurse navigator at your MIL's hospital or doctor's office may be able to direct you to other resources to help with everything from home care to financial assistance too.
Please do come back and let us know how the next steps go.
Judith and the Mods
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Biddy, I'm sorry your mother-in-law has to go through this. She is very lucky to have such a kind and sensitive daugher-in-law. The waiting is awful but don't beat yourself up that you 'should have' got on top of things sooner. MIL obviously knew that something was not right and chose to deny it to you. Glad that the surgeon is knowledgeable and moving quickly and hope that if it does turn out to be IBC that any treatments she may have will be tolerable. I'm in my 70s and doing very well It is very hard on you taking care of everyone and working full time so make sure you look after yourself as well.
God bless. Kathy
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Wow -- thank you all for the prayers and concern. We expected a call tomorrow, but it came early...it's Stage 4 IBC. The doctor was in surgery but wanted his nurse to let us know right away and get scheduled for a PET scan ASAP, so I'll be setting that up tomorrow. I didn't ask about the ER+ that Ma111 mentioned. I'm still not up on the various acronymns and will have to look up what that means. Her surgeon wants her to see him next Tuesday, as well as the oncologist. Then he also wants her to see a radiation-oncologist next Friday. According to the nurse, he's thinking it'll be both treatments simultaneously. Have any of you heard of that? Everything I've read about IBC is that it's chemo first, then mastectomy w/lymp node removal, THEN radiation. I haven't read about anyone having both treatments simultaneously. And, of course, all of this is dependent on the PET scan results. I feel so bad for her. What can I say or do? All she says is "I was afraid when I finally decided to move and be closer, something like this would happen...I don't want to be a burden..." She is the sweetest woman on earth and doesn't deserve for this to happen. But her son is also a precious man and didn't deserve MS. But then again, God never promised us life would be fair so I just need to keep my faith and turn it over. If any of you can tell me what I can say to her to reassure her (without giving false hope?), please help. I just don't know what to say to her except "I'm so sorry Mom...I'm glad you're here instead of alone in WV..."
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Biddy, it sounds as though the doctor is moving to get your MIL's treatment underway without delay. Other members will be along to give you more of their personal experiences with IBC, and there is an Inflammatory Breast Cancer section on the main Breastcancer.org site with more information.
Judith and the Mods
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Biddy, I have heard of chemoradiation as they call it. The radiation to the breast will help calm down things locally while chemo does it's systemic thing.
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Hello Biddy: I`m so sorry you`ve received this devastating news. It is hard to know what to suggest to say to your mother-in-law but you are so loving and kind and just being there for her is the best. I can understand her not wanting to be a burden but just to keep reassuring her that you are happy to have her living with you. Life does not seem fair at times.
I had chemo and radiation at the same time after my pathology results were so bad. It wasnt too onerous until I got very badly burnt with the radiation in the last week and it all blistered (sorry, not very nice to have to tell you this) but the good thing is that it does heal and it doesnt happen to everyone. But that is down the road after you`ve discussed all options with the surgeon and oncologist next week. We`re praying that the PET-CT scan will be clear. The biopsy would have shown if the cancer is Estrogen and Progesterone positive or negative (ER and PR). If it is Estrogen positive then it`s hormonal and there are medications (such as Arimidex) that may block the estrogen from feeding the cancer. Also if it shows HER2+ then Herceptin can be a treatment course. Too much to think about, your head must be in a spin. Keep in touch, we`ll help when we can.
God bless, Kathy
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Thanks ma111 and Kathy for confirmation that such a treatment does exist...chemoradiation... Sounds like it's something that's done when things are bad, but it's obvious from talking to you ladies that bad may be bad, but it certainly doesn't mean it's time to call Hospice. I'm so thankful to hear from you Kathy, with you 12/2009 diagnosis that's similar to my mother-in-law's (8cm+ Stage IV IBC). You're so right about it being too much to think about. But I'm a fast learner, and am hoping for positive ER, PR and HER. The surgeon was pretty blunt that it has probably spread, so please keep praying that the PET scan either proves him wrong or at least shows that it's manageable.
Does the cancer itself make you tired? She's 81 and has been napping a lot since she came to live with us last May, but I just put it off to her age. Now, since she was diagnosed, she's napping even more. I ask her if she's tired, in pain, etc., and she says no, not really. She occasionally has a stabbing pain to the breast, but other than that, she says she can't tell anything's different. I'm just wondering what the physical symptoms of more advanced IBC are. Can anyone help?
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Biddy her body will be trying to fight the cancer on it's own and that will make her feel exhausted so sleeping more at this particular point in time is normal. Wether it is advanced IBC or some other BC, sometimes there are no other symptoms it just depends on the person and where the mets are and how far they have spread. If she is having no other symptoms at the moment that's a good thing but later that may change.
I hope your MIL reponds well to her treatment and she is very lucky to have you to care for her.
Love n hugs. Chrissy
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The cancer itself does make me tired and I nap alot and I am only 48. The radiation is the easiest part of the treatment while the chemo is rough. Keep posting questions so that we can advise on side effects and such. We are more then happy to help.
You are a fast learner hoping that she is ER/PR+, I will pray that she is. One good thing that comes to mind is actually her age and hopefully that means a less aggressive disease process.
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Just remember that there are a lot of us here who can answer your questions and also give you some emotional support. Keep us informed and we'll help out any way we can.
There have been a lot of women in my IBC support groups who were not correctly diagnosed for 5-6 months, and they're still around and some are NED (no evidence of disease) even though they are stage IV.
I still get sleepy and want a nap some days...so I just do it! I'm lucky I'm retired and almost age 70 and can "do as I please". LOL.
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Thanks Claudia, Ma and Chrissy. I guess I'm in the holding pattern now...waiting to see the doctors Tuesday. As I mentioned in my original post, my husband has MS and can't go to the doctor visits with us. There are two more sons that live within a 3 hour radius, and one of them can come to one of my MIL's two doctor visits Tuesday and wants to know which he should come to. She sees the surgeon in the morning to go over the pathology reports and PET scan, then sees the oncologist in the afternoon. I'm thinking the oncologist would be the better of the two since he can only attend one but wanted to ask you ladies. I would hate to recommend he come to the oncologist visit and then the surgeon change routes on us and say let's do the mastectomy first. What do you ladies suggest?
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Usually the medical oncologist is the one that recommends what treatment comes first. So, have him go to the oncologist visit not the surgeon. You are correct about what you read about chemo first, surgery then radiation. However, keep in mind that medicine changes all the time and the Internet doesn't always reflect that. A mastectomy can be done after radiation. I think the chemoradiation is best for her to kill a lot of it upfront.
Also keep in mind that my situation. I was not surgical when first dx as I had distance nodes. Had chemo which got rid of distance nodes and down to one pulmonary nodule. Still had the subpectoral and axillary nodes. Had axillary surgery and they could not reach all the nodes. Radiation killed the nodes they could not reach. I am still here. I am saying that I will be around long as now I am very advance, but for 2 and a half years I have had a decent quality of life with presenting with advance cancer.
My rash did not show up for one and a half years, so no mastectomy for me. They did not recomend it. I found it in my axillia when I was shaving.
You are doing very well with this. I think what you are already telling her that you are glad she is here not by herself is about the best thing to say right now.
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Ma, this is a stupid question (or at least it seems so to me), but how can they guage the node involvement until they biopsy the nodes? Maybe from the PET scan? And yes, I am so thankful she's with us and tell her that frequently.
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PET or CT. They did bx my nodes to figure out what kind of cancer I had, then I started chemo 2 weeks later. No question is stupid. They kept scanning me to see if the chemo was working.
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There is no "one treatment fits all". We are all different and our Drs are different. Her overall health can also come into play on treatments.
I was DX'd at 63. In my case I did chemo (4 Adriamycin and Cytoxan 2 weeks apart), 2 weeks after last A/C had a Mod. Rad. Mast., 3 weeks later did more chemo (12 weekly Taxol), a week after last Taxol started 25 radiations and week after first rad started Femara (ER+) -
Hello Biddy: Good luck with your visits tomorrow. It's great that your son can go with you and probably the Oncologist visit would be the best. The Oncologist can also review what the surgeon has told you -- and don't forget to ask for copies of any reports or results so that you can read them yourself and take them home. It's hard to take in everything at once when the doctors are talking. A note book also helps. Have questions written down for him to answer, we forget when we get into the office as it's all overwhelming -- and don't allow the Oncologist to rush you through his recommendations They are always busy but you and your family deserve his time too.
With regard to feeling tired and falling asleep, you MIL is getting older too. I could never understand my husband always taking power naps but I can sure take advantage of them myself now, I can fall asleep at the drop of a hat. It's also the emotional toll which wears us down. Your MIL is worried but she doesnt want to worry you so she's holding it all in -- and that is very very wearing.
Your MIL is lucky to have such a kind and caring daughter-in-law. Just keep reassuring her that you're glad she's with you and you're not worrying about her hundreds of miles away, which is worse.
God bless. Kathy
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Thanks everyone for the info and prayers. We just finished a day of back and forths...first to the surgeon to hear what we already knew from the pathology report and PET scan. It's inflammatory breast cancer, and is ER-, PR-, and HER2+, Stage 4, Grade 3, with one node involved per the PET scan and no metastases noted.
They're going to get an echocardiogram Thursday to see if her heart is strong enough to handle chemo. Then we go to a chemo 101 class next Tuesday, and get a port put in ASAP (will hear when tomorrow) and get chemo before the end of next week. The oncologist was still thinking about what "cocktail" to give her and wants to see her echocardiogram before he decides. He also might go ahead and do the first treatment without the port if she can't get into surgery to get the port placed as quickly as he wants.
So please keep us all in your prayers. Thanks again!
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Hi biddy,
I will keep you and MIL in my prayers. Sounds as id the are moving things along for her. Best wishes.
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Hi Biddy: Thanks for keeping us updated. I've been thinkng about you and wondering how things went with the doctors. It's great news that MIL does not have metastases. Good luck with everything, it's such a lot to take in all at once. God bless. Kathy
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Yes Bon, she has multiple open lesions -- one covering her entire nipple and 4-5 additional. Her breast is an oozing mess. But the node involvement was in the axilla, so is that good?
She'll be getting the port placed tomorrow morning so we spent the afternoon doing pre-op and also getting an echocardiogram. During the preop EKG, a left bundle branch was noted and the nurse and tech acted like it was a big deal. Then my MIL said "Oh yeah, I've had that for years...I've had 3 surgeries since it was noted..." This was the first I heard of it, and the surgeon and oncologist also aren't aware. The preop nurse made a copy of the EKG and had me take it with me for the echocardiogram. The echo tech took an extra long time doing the scan and I'm hoping it's not because she saw something, but because she was making sure everything was okay. I haven't hard anything from the hospital calling off the port placement surgery tomorrow, so I guess we're still a go for that. Her procedure is at 11.
Question about Herceptin -- since she's HER+, I'm sure that's a treatment they were considering, but I've also heard it's hard on the heart. Does anyone know anything about that. And about whether or not a buncle branch block is serious enough to interfere with chemo? She's scheduled for her first infusion Tuesday morning so pray that all goes well.
Another update -- I discussed my concerns with her patient advocate and she spoke to the oncologist who ordered home health visits starting the day after her first chemo treatment and continuing as often as daily, as needed. So that makes me feel a little less anxious but I'm still just so afraid that she's not strong enough to go through this and that the treatment will be the beginning of the end. But then I remind myself that no, the IBC was the beginning of the end...and to do nothing is to guarantee that we lose her.
Thanks again to all -- Kathy, Ma, and Bon. I feel like a whiner for even posting my caregiver fears when you ladies are facing yours head on. You have my utmost respect and gratitude, and prayers.
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I am on Lasiks because of damage from Herceptin and they want me to start taking it again. Herceptin causes congestive heart failure not blockage, so they might give it to her.
Never feel like a whiner on this board. That's what they are four.
I am glad to hear about the home health nurse. That will help both of you.
Prayers will be coming your way Tuesday. I wish the best for both of you.
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Hi Biddy:
Please dont ever think of yourself as a whiner. Everyone on this list feels empathy and will help when we can, its not an easy road. Glad to hear that you will have a nurse coming in to help with the wound dressings, its good to have someone experienced to help out. Everything is a worry but please dont hesitate to write, yell, vent - thats what this list is for.. Thinking of you.
God bless, kathy
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Thanks Ma. I work at an independent college prep boarding school and it's closed this weekend (which means the kids that live close enough went home to their families for a long weekend). In addition to U.S. kids, we also have international kids so I had 15 of those that couldn't travel home for the 5-day long weeknd over for dinner tonight and my MIL was in heaven. I usually do it every time there's a break like this and was worried that maybe it would be too much for her, but these kids from Spain, Hungary, Czech Republic, Germany, South Korea, China (I think that covers all the countries) are great for her. Each of them took time to sit with her one-on-one and talk to her about their countries and customs. She was in great spirits when they left and I felt so happy for her. It was only for a short time, but it was wonderful to see her smiling and laughing. I hope she does well enough for monthly visits from them as I believe they're great therapy for her.
I've posted so much negativitiy the past couple of weeks -- I just had to share this moment of happiness.
How are you doing Ma? And if you don't mind me asking, what state do you live in? (I'm in GA.)
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Well, Mom is 6 hours post her first chemo infusion. The plan (for now) is Cytoxan and Adriamycin ever two weeks, with each chemo treatment followed the next day with a Nevlasta injection. The onc plans to do that for 5 treatments, then reevaluate. She's peeing red (normal) and sleeping almost nonstop, but she's had about a quart of water today so I think she's getting enough. She says she feels bloated, but other than that, no complaints except fatigue.
One day at a time...
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Thanks Bonnie -- all of that was a big help. Just knowing what she's going through is normal for the drugs she's getting helps. Today (3 days post AC and 2 days post Neulasta) she's feeling a little more human. Now she's stressing over whether or not her insurance company will pay for Neulasta. There were some complications the day she got the shot with the end result being that it wouldn't pay for it to be administered in a doctor's office (she had it there anyway...yikes!) so now they're trying to find out if it'll pay through our local pharmacy or home delivery and self administration. What if she can't take the Neulasta? Isn't it primarily given to increase her WBC to minimize the chance of infections? Or is there some other reason? So far, her breast appears to be drying up some -- does that mean the cancer is responding to treatment? When and how do they check to see if it's responding? Prayers your way --Fran
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