Invasive Lobular Carcinoma-healing after bilateral mastectomy

Maryellen6
Maryellen6 Member Posts: 17
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hello,  I am new to this site and need some help.

Three weeks ago I was diagnosed with Invasive Lobular Carcinoma at the age of 65. I found it myself doing a breast self check. I have had mamogram, ultrasound, biopsy and MRI...confirmed the DX.. at grade 2..no stage yet. The ultrasound measured the mass at 2cm bu the MRI measured it at 5.4 cm. No lymph node involvement was seen as of yet and nothing in the other breast on the right side. It is in the lower inside left quadrant. I have met with the cancer team and decided on a bilateral mastectomy with reconstruction at the same time. They indicated that if there is no cancer in the lymph nodes or other breast then I may not need chemo or radiation but will not know for sure until the path report comes back. They were somewhat perplexed as to why the difference in size between the ultrasound and MRI.

Has anyone else had a difference in mass size between the ultrasound and MRI? My oncologist stated that sometimes the MRI's measure bigger than the acutal tumor size.

Also, and this is my bigger question.....Once home from the hopsital how long was it before you were comfortable being left alone to fix a meal for yourself and such. I will have drains in for anywhere from 5 days to three weeks. I am married but our children live out of state. How long did you need someone with you 24/7. I know I can't drive while the drains are in but I am wondering how long my husband should take off of work.

This is all very scary and not the way I intended to start retirement.

Thanks so much,

Mary Ellen

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Comments

  • politicomama
    politicomama Member Posts: 187
    edited April 2013

    Mary Ellen, we have an age difference, but I had a 13 month old. Had surgery on Wednesday, came home the following morning. I was able to shower, dress, and do basic things on my own by Monday. I had full day help with the kiddo the first week, and half day the second week. Drains came out day 8. I did not have reconstruction.

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    I was in the hospital for 4 days and went home without drains. Once home, I did not have someone with me 24/7. The biggest annoyance was that I couldn't carry anything and I couldn't lift my arms above shoulder level. So you will be limited in what you can do, but you can fix a sandwich for yourself and get around. 

    Also, I did not have recon, so that made the recovery easier. I had, for example, minimal pain.

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  • gramwe
    gramwe Member Posts: 251
    edited April 2013

    Welcome Maryellen, so sorry you had to join us. My bilateral mastectomy was 6 weeks ago, no recon, then a second surgery 3 weeks ago. My hospital stay was 23 hours, there's no place like home, drains came out in 6 days. My husband took 4 days off to be at home with me, my children popped in when he returned to work. As long as things are within your reach, and you aren't on strong pain meds that could make you unsteady on your feet, you should be able to be alone in a few days. I only wore zip front robes until the drains were removed. My sweet husband pinned short socks to the inside of my robes, so I could tuck the drains inside the socks and not have them dangling.

    Wishing you all the best.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    Maryellen6, I don't know if this will help you, since your surgery experience will be unique to you, but I had to have one drain in my lumpectomy site for 3 weeks. It wasn't inserted initially but after the lumpectomy my breast swelled up and I needed one. I went to bikram yoga classes, hiked, taught my university classes, and certainly drove with that darned thing in. I just tucked it in the waistband of my pants or shorts and went about my day. 

    You will find that you can do a lot more for yourself post-surgery than you think--or even might have been told. 

    I'm sorry you've had to join us here. Many of us had clear mammos for years, not knowing ILC can hide from scans. I have dense breasts, which hid this beast even better than normal breast tissue. 

    Welcome and hugs

    Claire

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2013

    Sorry you are joining us, but this board is great.

    My MRI indicated my tumor would be .7mm but it ended up being 1.8cm.

    Post surgery, I was able to do almost everything, including my yoga almost immediately.  The drains are annoying but not a huge hinderence.  The only issue I had initially was how high I could reach..but that resolved within a few weeks.  Get your cups/mugs, kitchen organized pre surgery so you don't need to reach far.  I'd also recommend a Physical therapst.  THese "piano string" things develop post surgery and the PT can massage it and break them up.  They will do this on their own, but that limits the reach and the PT speeds things along.

    Best to you.

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  • NYCchutzpah
    NYCchutzpah Member Posts: 415
    edited April 2013

    I had a BMX last year. Was in the hopsital for 2 days and drains were in for about 2 weeks. Husband only stayed home for 2 days then I was on my own. Before the surgery I did a lot of cooking and freezing meals. If you like to cook get one of those hand held stirring things, I didn't realize that stirring uses muscles on my chest. I was allowed to shower about 4 days afterwards I pinned the drains to my panties when I showered. Also if you can get someone to shampoo your hair when you get home. The shampoo made me feel human again.

    Good Luck

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  • EverydaySparkle
    EverydaySparkle Member Posts: 19
    edited May 2013

    I'm usually a very positive person so I almost feel bad responding but everyone above had such an easy recovery that I felt like you might have a false sense if yours doesn't go as well.



    I had my BMX on 2/11 with immediate reconstruction. I was supposed to go home the next day but due to some minor complications I stayed in the hospital an extra night. Once I came home, I had someone with me 24/7 for 2 weeks from the date of surgery. I remember the first day I was able to stay home alone... it felt so good to be independent since I'm not good at letting others take care of me! But honestly, I really needed that 24/7 care. I spent most of my time in a recliner, sleeping a lot, and didn't have the strength to do much on my own except get to and from the bathroom. I showered by myself for the first time on day 10 but it was a major accomplishment. I give credit to the women that where able to get back to normal so quickly because I'm 12 weeks out and still don't feel normal. I'm sure my age (49) and my reconstruction process has something to do with it but my upper body muscles are still very sore and not very strong. I was prepared for a long recovery so its all good. I'm not complaining... much... LOL.



    Just wanted to give you another view. Hope all goes well and you're in the quick recovery group.



    Sending big hugs and healing energy!!

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  • wallycat
    wallycat Member Posts: 3,227
    edited May 2013

    Maryellen, how are you doing?

    I notice that the majority of gals that post quick recovery have had no reconstruction; you didn't indicate what you were planning.

    I hope things are going well for you....do post back to let us know how you are doing.

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  • mary625
    mary625 Member Posts: 1,056
    edited May 2013

    Hi! We've got the same name! I would say that I needed someone for about a week and then had my husband leave things on the counter because of problems with reaching. I did not have reconstruction, but I did have lymph node removal on one side which probably affected things a bit. One suggestion for showering--get yourself a lanyard (used for hanging nametags around people's necks at conventions) and use that to hold the drains and keep them from sagging/pulling when showering. Also, get a handheld shower and have someone leave it hanging down for you. I then bent over at the waist to wet and wash my hair.



    Re: different in ultrasound and MRI--I had the same--the difference was between 2 cm. and 7-10 cm. The MRI was picking up tumor that was deeper and further away from the surface. I don't know how deep the ultrasound can go. However, I'm not fully convinced that the MRI was correct or not as it was exactly that extra area that picked up the contract which disappeared during chemo. On the other hand, that was my best indication that pre-surgical chemo worked. I'm really not sure what to think because the "tail" as they called it was not biopsied. I had 3 places on the other breast that continued to pick up contrast. They were finally biopsied and were benign. One thing I definitely learned in this experience is that imaging from the mammogram to the ultrasound to the MRI is not foolproof.

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  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    "One thing I definitely learned in this experience is that imaging from the mammogram to the ultrasound to the MRI is not foolproof."

    Oh yeah! This was another reason I went for the BMX. My faith in being able to detect anything easily down the road was severely shaken by the varying and inaccurate results from the various imaging methods. My path showed cancer in 7 nodes. One was paplpable at DX. None showed on any of the imaging, and at least one of them was large and had extracapsular extension etc. I had U/S, mammo, MRI and CT.

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  • Maryellen6
    Maryellen6 Member Posts: 17
    edited May 2013

    Hello to all of you again,

    Thank you all for your responses. It is so helpful to know others have survived this road that I am on.

    I am still feeling overwhelmed 4 weeks after DX. I continued to work but will probably retire after the surgery since I am 65 and also on Medicare along with my employers health insurance. I need all of my energy to heal. I just can see continuing to work when I don't have to.

    I did decide on bilateral mastectomy with immediate reconstruction. I just did not feel comfortable only removing the left breast, where the cancer is showing because this type of cancer is so sneaky and didn't even show on my diagnostic mamogram. I just couldn't see worrying everyday for the rest of my life it it was in the right breast as well. So they are both coming off, which actually makes me very sad but it is the best choice for me.

    My surgery is Monday, May 13th and I am very comfortable with my team of Drs. They are so supportive and have been at this for many years. However, until the final path report comes out we still don't know if I will need chemo or radiation. At this point the cancer is only showing in the left breast, no lymph nodes or right breast. But since there is such a descrepency in the tumor size (Ultrasound 2 cm but MRI 5.4 cm) they still are going to map the lymph nodes.

    My husband can take off of work as long as necessary and my daughter and son are coming to help for about the first 5 days after I come home. I don't think this will be a walk in the park but I have done everything possible to prepare both physically, metally and emotionally-but am still scared. Actually I feel like I am being led to the slaughter! If that makes sense. I have been healthy my entire life and this has thrown me for a loop-but it is what it is and I have to deal with it as positively as I can.I have also been listening to some pre and post surgery meditation tapes.

    I appreciate everyone's comments....

    Hugs to all of you..

    Mary Ellen

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  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    I hope your surgery goes smoothly and that you have an easy recovery.

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  • Givemestrength
    Givemestrength Member Posts: 11
    edited May 2013

    Maryellen



    I wish you all the best.. I was recently where you are and made the same decision about the bilateral MX. You will get through it and wish you a speedy recovery.



    Positive thoughts and prayers your way.



    Xxxx

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  • Just-julie
    Just-julie Member Posts: 32
    edited May 2013

    Maryellen,

    This is my first post and first time on this site. I am where you are. (My surgery is Thursday)You are in my prayers and thoughts for tomorrow.

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  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Julie, welcome and best wishes for Thursday.

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  • Just-julie
    Just-julie Member Posts: 32
    edited May 2013

    Thank you.

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