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Just Diagnosed with invasive mammary carsinoma with tubulo-lobular features

Posts: 10
Joined: Nov 2012

I was diagnosed two days ago. Decided on a bilateral mastectomy to take place mid-Dec. Never been sick or had any type of surgery. I am lost on what to expect. I decided to go on my planned vacation in early December.
My family continue speaking about reconstruction at the time of the mastectomy. I am trying to learn as much as I can about the illness. Any thoughts about the diagnosis and the reconstruction. I will really appreciate any thoughts and experiences. Thank you, thank you!!

New Flower
Posts: 4299
Joined: Aug 2009

Welcome to the board
You did not tell too much about size of your tumor, however in my opinion for lobular features mastectomy is a right choice. I have had immediate reconstruction 4.5 years ago as my surgeon suggested, however looking back I am questioning my decision. Usually, immediate reconstruction takes more time to coordinate schedule of two surgeons and cause a delay from 2 to 4 weeks. Plus surgery with reconstruction itself take more time.
Mastectomy is a major surgery, which needs preparation. Your surgeon office should give instruction what medical test you need to do before you will be cleared for the mastectomy. Many cancer centers are conducted patient education classes or orientation. Please ask your doctor about it.
Good luck and keep us posted

Posts: 10
Joined: Nov 2012

Thank you New Flower, I have been reading for the last 3 days anything I could. The meeting with the surgeon is next wednesday. Since I will be leaving on a business trip, I only have 5 days to get ready for surgery even though it will not take place 2 wks from now.
The report says "the longest focus of invasive carcinoma measures 0.7cm. It also says no lobular intrepithelial neoplasis or ductal carcinoma in situ is identified in sampling"

I already had all the blood tests, xray and ekg next week.

Why are you questioning your reconstruction decision, if you don't mind me asking?
I appreciate your reply and insight.

salls41's picture
Posts: 340
Joined: Apr 2012

but welcome to this board. A very awesome group of women and men are here to support you!
My story..
I was dx one year ago this week with triple negative IDC and I made the decision to have a bilateral mastectomy with immediate reconstruction. I had a tumor close to 6cm and the breast surgeon determined chemo first then surgery. Due to the holidays and insurance issues it took a while to get started but I did have my first chemo cocktail in January and finished in April. I had my surgery in May and had the tissue expanders in place and filled each week. I was due for surgery to remove the expanders and put in the implants in Sept. I got a serious infection in August and had surgery to remove the expanders! I was heartbroken and it was like having to go through the emotional mastectomy all over. I am not sure now if I want to ever go through that again. I have to wait for another surgery for my body to heal well, so I am really thinking twice about it.
You will hear stories of great success I am sure so weigh out your choices, this is your choice alone and only you can make it! This is your body.
Prayers and positive thoughts for you as you begin your journey!

Posts: 10
Joined: Nov 2012

Thank you for your Prayers and positive thoughts. I am leaning to no-reconstruction. The surgeon said that I could change my mind at any time and start reconstruction.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

My dx was Aug 2010, triple neg inflammatory BC. In Jan 2011 I had a bilateral (chemo first), the right side was prophylactic (mostly because I wanted to be even). No reconstruction, it is not recommended with IBC for at least a year. I still haven't had any reconstruction, I am content with my prosthesis and would rather avoid any more surgeries if I can.

Some suggestions for your bilateral...after surgery your range of motion will be impacted. So you will want pj's/clothes that button/zip up the front. And anything you have to reach for should be moved to mid-level. Your doc will likely give you a lifting restriction, mine started with 2 lbs and worked up from there as I got better. I was also told no repetitive motion (vacuuming, washing windows) for 6 months. (My husband was so thrilled to take over those chores...NOT)

I slept in my bed with a wedge pillow and several smaller pillows to support my arms. Even with that, my husband still helped me out of bed for the first week or so. Others here have slept in a recliner.

You will have drains, probably two to four of them. The purpose of the drains is to wick away extra fluid. They are annoying, they require regular monitoring/maintenance. Be sure your doc/nurses review their care with you thoroughly, and be sure you fully understand those instructions. My husband took care of mine for the first two weeks or so, then I took over. Many women are able to have the drains removed after a week or two, some have to keep them longer. The amount of fluid draining will determine how long you need the drains. When I showered, I pinned the drains to a shoestring tied around my neck.

Finally, (and this applies to your entire journey) if people want to help, let them. This was really hard for me to learn, but I have gotten MUCH better at it. You would be surprised at how good it makes people feel to help. And it doesn't hurt to have a few suggestions handy...bring dinner, do some laundry, vacuum, clean the bathroom, run an errand, mow the lawn, etc. Sometimes all you need is a chance to get out, if that's the case, say so and go have coffee and chat.

I just realized I didn't welcome you. Although it makes my heart heavy to see another newbie joining us, I am glad you found us. This group is incredibly compassionate and supportive. I have made many good friends here, I hope it is the same for you.



Posts: 10
Joined: Nov 2012

Linda, Thank you so much for the important details. I just realized that I do not own anything buttom/zip up front. Sleeping is going to be a chore. I sleep on my stomach. Yesterday tried sleeping on my back. Couldn't sleep until 3AM. When I woke up I was on my stomach.
your post gave me a lot of insight..my coping mechanism is planning for the next step. I am sorprised how cool and non-chalant I am right now (like planning for an event). However I do not want to talk about it with my kids. Maybe because I am so strong and can handle everything always. It will probably hit after the surgery. Who knows, we'll see. Maybe because it does not seem real.
I found the postings very helpful.
How are you doing now? I hope all is well. Take good care, Hope to talk to you soon. Ana Maria

New Flower
Posts: 4299
Joined: Aug 2009

I think it is a good approach to plan and handle this situation as a "project". Believe me you will sleep on your back, initially because you will be given pain killers which usually promote sleep. I also took sleeping pills while recovering from my surgery.
My reasons for questioning my immediate reconstruction: extra 2 weeks waiting for getting on Plastic Surgeon schedule, longer time on operation table, and longer recovery time from surgery. I have had DIEP Flap, which is 8 hours surgery, then two more.
Your family should not tell you what to do regarding reconstruction. It is between you and your medical team.
Good luck

Posts: 653
Joined: Oct 2012

I, too, was a belly-sleeper with a slight turn, one arm under the pillow. That is something I have not been able to do in months. This was one reason why I slept out in the recliner (long enough for my feet to fit on the lifts) for several months. Initially, it was easier to get in and out of after my surgery; but after that, it was because I just cuold not sleep well on my back. In the recliner I was on my back, but I could change my position enough (and have the support) that it worked well for me. When I did move back to bed, I used two pillows. It took me awhile, but eventually I got to where I could sleep on my sides. I have not yet gotten my arms back to where they were so I can raise them high enough to be under my pillow, even if extended. I hope to work at that once I get my port out. It may be that I can't get the left arm to go up enough -- not just because of the surgery (most was done on that side) but because years ago I dislocated my shoulder playing volleyball and it has never been the same.

I find that I am sleeping better in bed than I first was. I think that because it is getting easier to get comfy on my side that it was helps, although I still sometimes have to prop myself up when I turn to get situated.

Patience. I think that's the word. I went with sleeping in the recliner because I thought it was important that I get my sleep. Towards the end of radiation, I returned to my recliner because I was not too comfy trying to move to my sides to sleep -- I had some burns. But once that problem settled, I was back to bed. I healed rather quickly from the burns.

To give you an idea of time, although we are all different, I had my surgery the last part of February, a double. I was able to return to bed, most of the time, by the end of May. I had chemo from the early part of April to the middle of July, every other week. I had radiation therapy from the second week in August to the end of September.

Hope this helps a little.

elmrush's picture
Posts: 1
Joined: Dec 2012

Just got a dx for invasive tubulolobular yesterday.  I am stunned and numb.  New Path thank you for your post as it led me to this site while googling my dx.  To all of you that posted I found it informative and look forward to being able to speak with others that share dx. As hard as it may be to believe I do not know a single person that have been diagnosed with breast cancer.  I am glad I found this site and look forward to more info from all of you. Any input you could provide on what I should be asking the surgeon when we meet would be greatly appreciated. Thank you all in advance.


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