Lobular Sucks!
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I’m so sorry you have the pain, Shetland. I totally get the constipation thing, but it sucks. You definitely don’t want to add constipation to this mix. I will be thinking of you for Friday, and I hope they can get you relief. I know you’ll come back and tell us how you’re doing once you feel up to it. Hugs
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I talked to the surgeon this morning. Good news is I can have Vicodin if I need it. Bad news is that the surgery has to be regular abdominal surgery and not robotic or laparoscopic, because of my size and the tumor size. This will delay my systemic therapy longer but there is really no alternative. I'm gonna watch some shows now to distract myself from the bowel prep I have to drink all day.
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SP- sending you hugs, warm wishes and good mojo to get you through the week. You know everyone is pulling for you! That prep is the worst.☹️
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SP,
Sounds like the surgeon has her act together and has studied the best way to proceed. Your job now is to stay calm and do as you are doing -- watch distracting shows and do the prep. Hang in there and have confidence in your team -- they sound excellent.
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Oh, gosh. I’m sorry it has to be so hard. I cannot drink the normal stuff they give for colonoscopies, as I have an immediate rejection and puke it all back up. They let me take an 8 oz bottle of Miralax mixed in 64 oz of Gatorade. I tolerated that. I hope it’s not too bad, but I feel so bad for you
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Hugs SP. It seems you have great doctors who know how to handle this situation. If you were my sister, I would say I am glad they are doing the surgery not only to remove the tumor but they can see what is going on there and probably clean up if there is any other smaller tumor that the scan didn't catch. Then systematic therapy will take care of cancer cells that may be left behind.
What about polyps, did you hear anything if they are benign?
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SP, I’ll be thinking about you and wishing you the best this week and throughout your recovery. I’m sorry that you are dealing with this, ILC is a real bitch. Thankfully your team sounds very good! I hope you have a go-to comfort show to get you through this.
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Shetland, I am so glad you are getting the surgery. Surgeons don't always operate on MBC patients. It cleared up my eating problem miraculously. I was so happy to be finally able to eat again. It was a brief hospital stay, I think it was 4 days for me, and I was very happy for the drugs for a few days. They want you to be able to poop before letting you go home. When home, I had a little trouble lifting to get out of bed but maybe that's because of where they did the surgery (they went in through my belly button). I put a side bed rail up to help me get up. I hope it all goes well for you. One step at a time.
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Shetland, I'm also sending you positive thoughts and prayers for a totally successful surgery and excellent healing.
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Thank you, My Friends, for your words of sympathy, encouragement, and wisdom. I am re-reading them today. The mental game is challenging. I took a walk outside (Rolling IV pole with me) earlier and that improved my mental state. I met a nice gentleman who was trying to join his wife at her appointment. It is a big campus here, so I walked him all at he way to the desk in the clinic where she had just been called back, so he got there in time. The human connection did us both good, I think. My DH got britbox for me so I can watch gardening shows and historical dramas to distract myself while I drink the rest of my huge jug of colon prep.
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That was so sweet of you, Shetland. It always feels good when you can do something nice for someone. I’m sure he’s beyond appreciative for your help. Ugh, colon prep. That part will be done soon, I hope
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It does feel good to help someone else out, and to know you can do something even when unwell. The surgeon has me drinking the four liters of prep slowly over two days, so as not to tax the bowel with a big hit at once. And it's not like I have been eating full meals anyway.
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SP, doing good for someone is like a boomerang, it comes back to you.
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I hope it helps to take the prep slowly. It still sucks, but maybe you won’t be running to the bathroom every five minutes
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A quick report, dictated for DH to type, as I have not been able to sit up yet: The surgeon tells DH that surgery went well. She was able to do a resection (tumor out, ends reconnected). I will post more later.
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Yay for the good news SP and thank you to your DH and you for keeping up posted. "Tumor out" is like a melody to our ears. Heal well and feel better soon. Hugs!
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Congrats Shetland. It's a most exquisite moment to know it is gone and ends connected. Now just focus on the recovery and how good it will feel when your body has healed. Don't be afraid to take pain meds in the days ahead as recovery is always slower than we would like.
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SP-😘
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ShetlandPony, thank you for the update. I hope everything heals quickly for you and you are back on track in no time. Thank you, DH for helping Shetland let us know what's happening.
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Hi, Guys. This is my seventh day of captivity. I may get to go home tomorrow. I have the smallest room on the wing, and I could scream about bringing the blasted IV pole with me everywhere. Surgeon seems pleased with how I am doing, and just this afternoon switched me from clear liquid to low fiber diet. I have been nibbling a most exquisite piece of salmon this evening. It is kind of shocking to think about what I had to do to get unblocked and buy myself some more time. The incision is impressive. Pain is only when I accidentally engage my abdominal muscles or bump my belly. Also the incision pulls. What is worrisome is that the surgeon saw cancer in the area between pancreas, liver, and stomach; as well as nodules in other places in the peritoneum. I have not yet talked to my onc but this is not news one wants to hear.
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SP- So glad you could enjoy the salmon! Hope you can get home and heal there starting tomorrow. As Lita would say, “S#*! about what the surgeon saw.”It is reasonable to believe your upcoming treatment can knock that back. Gentle hugs coming your way
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Hi, ShetlandPony. Salmon sounds delicious. Haven’t had that in a while. I had a c-section in 1989, and I remember still that pulling feeling and engaging the abdominal area. Ouch. I hope you’re not in too much pain and you get to go home soon. Did they not see any of the mets you’re describing on scans? Lobular truly is a cancer you almost have to wait for symptoms for. It’s so freaking annoying. Thank you for the update. Hugs
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SP- Read your update. Hang in there. Hoping the treatment plan your MO has kicks those areas seen by the surgeon. My prayers to you.
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SP, thank you for updating us. Let's celebrate the good news first that you are recovering well. Systematic therapy is for taking care of the rest. My MO told me in cases with little cancer or a lot will have the same medications. Also, he is in the same boat as let's wait and see since I am lobular as well.
SP, did the surgeon remove other cancer nodules while he had access?
Sending you hugs.
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SP,
Just a suggestion that you might want to consult a gynecological oncologist to give you some advice about the nodules on the peritoneum, etc. Your note sent me down a rabbit hole about rare cancers in the stomach/peritoneum, etc., (even including ovarian cancer, believe it or not) and although we know we are dealing with BC, we also know that sometimes treatments that work for other cancers could work for us. I'm pretty sure that Elizabeth Viggiano and I discussed debulking of nodules on the peritoneum or in that area as a possible BC treatment. I know you have a good surgeon and a good oncologist, but sometimes thinking outside of the box is necessary.
Don't mean to step into your decisions -- just a thought.
Bev
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SP, I just want to send you a big hug and I'm thinking of you.
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Hi, Friends. I think I have been avoiding thinking/posting much about my situation, but believe me I read your replies. I like your attitude, Iwrite. Candy, thank you for your prayers. KBL, the CT scan that showed the colon stricture caused by a 5 cm mass also showed "abnormal" tissue in the adjacent peritoneal area between colon, stomach, and pancreas. (Reading her notes, I can see the surgeon did some fancy work, getting out the mass and reconnecting the colon without causing damage to these other areas.) The CT scan did not show the "multiple peritoneal nodules along the peritoneal surfaces, bowel mesentery and on the intestines" and the ascites. Lilly, one does wish the surgeon could have just removed it all, but that would have been too much. She wasn't going to start removing organs. She emphasized to me the need for a good systemic treatment. My second-look radiologist (ILC expert) emphasized the same. I want my onc to look at the UK's ROLo trial for metastatic ILC and consider getting that drug for me. Of course, we are still waiting for genomic results. I will follow your suggestion, Bev, and consult a gynecological oncologist. I am in favor of thinking outside the box. I will look into the HIPEC procedure that they use for other cancers of the peritoneum. I have to say that right now the thought of being cut open a second time seems more than I could deal with. I feel like I need to figure out a good treatment that will not leave me too sick or disabled, ya know? I feel like I am in a precarious position right now, and it is harder to push mbc out of my mind and live in healthy denial. I can hardly believe I find myself in this situation, after having liver mets only for so long. I don't want this to be the beginning of the end.
As far as coping with today, I find myself afraid of eating. What if I eat too much and damage myself? Eating caused me so much trouble with the blockage, I'm a bit traumatized. I have my low fiber diet notes and spend most of my time trying to feed myself. I need to get outside more, accomplish a few things around the house. Binge-watching a couple shows has been enjoyable, though.
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Shetland, I have no words. I am sorry for what you’re dealing with. I know Boost has helped me out when I wasn’t able to eat much. I don’t know if that’s an option for you to at least get some protein and nutrients. I have been thinking about you but knew you’d come and let us know how you’re doing when you could. I am sending hugs. F this disease.
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Bev has such a good recommendation. I remember when the GYN oncologist removed my ovaries she mentioned ILC loves to go to ovaries. A good GYN oncologist knows what to look for and how to safely remove what is needed probably with less invasive surgery.
Sending you hugs SP and I hope you are doing better today and finding some strength to be outside and enjoy the weather.
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Shetland, I'm so glad you continue to heal from surgery and you will be able to go home soon. What a relief you had a skilled surgeon taking care of you so you no longer have to deal with your previous eating problems. It's wonderful what they can do- and yet we want more.
I feel we are on a similar journey. After my intestinal surgery to get out the lobular mets, 2 years ago, I was so thankful to be able to eat again I gained all my weight back. Please do not be afraid to eat (if surgeon says it's okay) because the amazing surgery has hopefully given you the ability to enjoy food again- I've been most grateful for that. The what's next is where I am too. While PET/CT did not show up my mets for several months, a recent PET/CT with contrast found FDG in pelvic fluid and a nodularity. I have currently had 2 Taxol infusions but have no clue if it's going to work and for how long.The MO's all say, Systemic is the way to go and now to find what will work and how to follow the progress of treatment. Lots of questions hopefully great solutions on the horizon.
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