June 2016 Surgeries!
Comments
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FUBC, I agree with the girls. You have a lot on your plate right now, but try to put each one of these issues a little aside and focus on your recovery at this moment. It's too soon to think about future dates and possible kids if you don't fight for your life. We will be here to cheer you up and hoping for better news about you soon 🙏
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yes, Maya15, it is a catch 22 feeling here.... All results are good and recovering is fine overall, but as you said, I landed into a strong and aggressive type of cancer; therefore, treatment will not be easy on me.
Did you all loose or are already feeling the hair fall? I saw one mentioning about the cold caps...
There is no hospital/ clinic prepared with cold caps. It's on you. So I called a cold cap company " penguin" and I could not believe the amount of work involved in it. Not to mention the price to borrow the equipment, here it goes the list on requinents:
- an entourage required to drag items ( 2 sixty pounds cooler with dry ice containing 8 caps that need to be exchanged methodically every 20-30 minutes to ensure temperature of the head is below 32F. Must have laser thermometer to check accuracy of it. Also, making sure the dry ice is handled properly to avoid burnings, a pair of gloves is important. The procedure should start 1 hour before the infusion and finish a couple hours after The treatment is completed. Now, let's face it: after all of that you're going to tell me there is no guarantee for my regimen combination because they are too strong? Ohh hell, no!! LOL
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did I say I got my drains and stitches removed and At the same time I got my first filling today?? Yes, for shower right away but with orders to keep the bandage ( where the drains were) dry.
I feel like Joy ( the character from the animation movie " Inside Out") . If you haven't seen the movie, I highly recommend that you please check it. It's probably a good time to remind us that we are a combination of emotions ! So let's use our emotions wisely 😉
Xoxo to all
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mom2four, what a coincidence! Surgery at the same day
A friend told me that all women with cancer are considered sisters, so you will be my twin LOL
Keep it up with the good news. Have a fast recovery.
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Silviah, congrats on the pet scan clear!
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lollipop, good luck going back to work full time next week. You will do great! Don't forget to breathe in and out ( and lots of water!) xoxo,
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Mom2four, Specter, clauclau thanks for the support and I am sorry for venting here. I know there are other women here with more aggressive cancer than mine. I should count my blessings and be grateful mine was caught early on. Yesterday was a very long day. I had to see three doctors in three different buildings, not an easy task in NYC. The heat and the afternoon storm didn't help the mood either.
Clauclau, thanks for the information on the cold caps. I was definitely going to do it but now I wonder how would I manage it. I don't want to ask my soon to be ex for help. I guess i'll figure it out when time comes.
Specter, I did ask my PS yesterday if this was the sutures that holds the TE in place. He doesn't think so. I wonder if the sutures can get infected. Would sonogram show if there was a problem? The right side does hurt more when I am driving...I probably need to look more into it.
Mom2four, your friend's story is very touching. Thank you for sharing it.
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FUBC, vent away, this is the place! And having an early stage cancer isn't a blessing. It's cancer. In fact if you're having mastectomy and chemo, the treatment is basically the same as for the aggressive ones.
I can relate to your rant. I went through divorce, losing my home and my job in the same year a few years back and now I have cancer (also lost my job again 3 weeks before diagnosis, so now I'm not working). The way I look at it, things can only get better from here. That's what keeps me going. I'm also running around from one doctors office to the next in the hot humid NYC weather and I'm fed up with it. Add to the weather the hot flashes from chemo induced menopause and I'm constantly dripping in sweat.
Clauclau, yes I lost all my hair. If you're starting with AC or EC it will fall out between days 14-21. If you're doing Taxol or Taxotere first, it takes longer, around 6 weeks, and it can be slower.
I didn't do cold cap. It was too expensive and cumbersome, and BC can metastasize to the brain so I didn't want to restrict circulation to the head. My hair is also thin so I figured even if only 10% of it fell out I would need a wig/headscarf.
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FUBC, I've learned from having this surgery that it is not easy. Our bodies are going through a major trauma. I've learned to differentiate pain from discomfort. I have settled in and accept that I will be uncomfortable for the next 4 months. If you have pain meds, take them. Evaluate your expectations for this surgery. My PS warned me prior to surgery that it is a painful process. He wasn't kidding. That said, you still have a right to adequate pain relief. Call your MD until you get answers. I didn't have cancer, so my lymph nodes were not biopsied. I was told that sentinel node biopsies cause a lot of additional pain. Perhaps that is the source.
Never apologize for venting. You have every right to. You are goithrough some stuff right now. Believe it or not, helping you helps us. Your sisters are here for you. Hugs and lots of love to you. May you find peace
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clauclau, I guess we are twins. How are you doing? Are you still resting a lot or are you up and running? I never know what is normal or not at this point. I suppose I've never really been normal so I'm used to this. Lol.
Venting is good. And this is the perfect place because we are all in this disease together. No one should ever feel bad.
I found out that I have 4 lesions. Some are IDC. Some are ILC and I also have DCIS and LCIS. So I think I covered every variety of breast cancer. I guess I didn't want to leave anything out. They are all small. Does anyone have this? And does it change my prognosis? Everything I research it seems my situation isn't very common so I can't find much info. It would be nice to find others who are in the same boat. Hopefully not a sinking boat mind you.
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mom2four, my post surgical biopsy showed a mix of DCIS and IDC. They only knew of the IDC pre-BMX. My DX only changed grade due to final accurate measurement of the primary tumor. (moved from Grade 2 to Grade 3). Still waiting for my post op oncology team appointment to finalize my chemo plan, but was told by nursenavigator that the additional tutors were irrelevant and the IDC is what determines my plan.
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I'm sending love and healing thoughts to everyone. This is all so difficult, let's just keep on taking it one day at a time. There will be bad days and better days. Let's try to enjoy what we can enjoy. Today I had a nice walk in the sunshine, and a good laugh with my co-workers, I'm going on a short holiday next week, which I'm looking forward to, and I love my family and my dog. It may not amount to a lot but it's definitely something! FUBC hope you are feeling better. You are having a rough time, and we are all sending you positive healing thoughts. Don't worry, things will get better.
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Wow the support here is great, thank you. I have tried to be strong and move on with my life as best as I can, but the consultation with the fertility doctor yesterday was a reminder of my reality and it depressed me deeply. I know I have to overcome all the problems I have right now and I have decided to see a therapist. It will be stupid trying to overcome everything that is going on in my life without professional help.
Maya, I am so sorry for all you have gonna through and it feels like you've been through worst than me, that's why I feel like I shouldn't complaint much. But i honestly believe no one will understand me better than you girls, as you are all going through the same pain, feelings and emotions.
Specter, I am taking norco and NSAIDs. The days my pain gets better, I take half doses of norco and I stop the NSAIDs. I hate taking narcotics, although my doctors (PS, MO) and their nurses are saying to take full doses. I know the NSAIDs are bad for the kidneys, I don't want to go from trying to get rid of BC to losing a kidney so to speak. Last night I did take full dose of norco bc the pain was pretty bad. I can deal with the discomfort, after all it's temporary, it's the pain on the right side that it's unbearable and at times I can't even sleep. I also have an adjustable bed that helps a lot. Many times I change positions every 5 minutes. I can't remember the last time I slept in a flat bed. I guess the night before surgery.
Mom2four, I was initially diagnosed with ILC and LCIS. The dx was revised by the 2nd hospital with mix ILC, IDC and LCIS. Apparently my tumor was residing somewhere between the ducts and the glands. At that point I didn't care much, I was only concerned about the stage and grade.
ScotBird, thanks for the positive vibes. Sending some love back all the way to Scotland...
My pain is not as bad as yesterday so I am hitting the supermarket now...sooo in the mood for some cookies and ice cream, after all my sugar level was a bit low as per my blood test of 7/12/16. I need to get it up a notch lol
Enjoy your evening ladies.
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Aw FUBC, that's our girl. Cookies and ice cream makes everything better. NSAIDs can indeed cause kidney damage, but that's with long term heavy use. If you have concerns about kidney damage, ask your MD to add tests for kidney function to your next set of labs.
Seeing a therapist is an excellent idea. We can only offer you kind words and virtual hugs. We are not professionals and you could use some professional help. Our surgeries are only 4 days apart. I'm hoping we can heal at the same pace.
So glad you found this site. Nothing but love and new sisters here for you
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Thanks Specter, you're too sweet
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They took out my drains on Wed. The site and around it is swollen on one side. Is that normal or should I call the Dr this weekend? Thanks.
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The fluid continues to drain for a bit, so if your drain hole is closed that's probably what it is. One of my drains was still giving 20cc when they took it out, the hole didn't close and there was still fluid for 2 days. PS said it was normal. In theory your body should reabsorb it, so if it doesn't get worse/become really painful, I would give it a few days and see how it goes.
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Mom2four, we are on the same pace... And, yes, it's probably our normal! 😉
My drains got out this week, I drove my daughter to her basketball practice , slept on my bed full of pillows and got romantic with husband for the first time since surgery. I feel my life is going back to normal again. 😘
Ok. My first chemo starts this Monday so I am getting ready for it - including accepting the fact that there will be a set back of what I just called " life getting back to normal" LOL
Maya15, your description of after drains and body absorbing fluid is exactly what I got from doctors. If I understood it right, the nurse told me to use Curad / neosporin for one week on wounds ( around the breast to heal where stitches were and on each side where drains were - cover with bandage for one week). Shower is ok head to toe but quite honestly I don't feel that shampoo should run down my " open" scars , so I am still washing it once a week at hair salon for $15 ! It does make me feel pretty when I walk out of there!
Next step will be massage breasts daily with aqua four emollient. OMG, this will be hard for me because I don't like touching these new breasts of mine....I am very thankful for all the technology and blessed for the opportunity to have these TE in me. Don't get me wrong. It's just the feeling that I don't like and I don't feel comfortable touching it. It's just not for me.
Anyone at this massage stage already? Did I get the next steps right? Any other suggestions?
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FUBC, you got this! I am glad you will have some professional help but knowing that we will be here too. Someone said we are sisters, and I heard that from a person who went through BC 3 years ago.Looking at how she is now gives me hope that life gets better, and we will get there!! 🙏
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Maya15, thanks for the feedback and for sharing your hair loss. I am making a wig and buying other items to go with hat, scarfs, etc. My hair is part of my identity, so I know It will bring me down to see it go... I am trying not to be so emotional about it. Instead, I keep reminding myself it is just a phase. It will pass... Just like a lot of other phases in our lives. The most important thing is thatWe will survive!
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thank you Scotbird!
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mom2four, I forgot to mention that I did have some extra findings during the MRI and this was the reason I went surgery before chemo.
The pathology test came back with other small cancer cells but the nurse is right to say they are irrelevant to determine treatment at this point. Anyway, it was good to know what they were 😉
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Clauclau, are you having Taxol first, or AC?
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i have a question to anyone of you who might know the answer:
Just got my period and I am about to have my first chemo on Monday. Can I still do it! Should I mention about it? Does it even make a difference on side effects?
Thanks sis...😘
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Clauclau, your period won't make a difference, and you don't need to mention it. It might be your last period however, as chemo causes menopause.
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had the same thing happen to me. Had my mastectomy 7/8. That night told the nurse I felt pain digging into my back and was told that it was normal pain from the surgery. Next morning told the doctor and they pulled the back of the bra. My skin came off when they took it off. Now I have a big sore on my back but the doctor medicated the site and put on a bandage. It is healing. I was so mad at the nurse and I let the hospital know when they called for me to rate my hospital stay. No this shouldn't happened. Hope you are feeling better
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I'm tired and frustrated this morning. Another drain failed late last night. It was still putting out 50+ CCS per day and it's on the side that is still swollen and had the bleed the doc went back in to repair 4 days post BMX.
Called the on call doc (cancer doc, but not a breast specialist) and she had my husband remove the drain.
It's more swollen on that side this morning. Uuggggh.
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Tsoebbin, is it normal what's happening to you? Maybe you should call and make a big deal about it. How do these drains just keep dropping like this? When the nurse pulled my drains, I saw the part that goes in the body was pretty long, I mean it didn't seem to easy for them just to slide out... Are you securing them correctly? I mean, it doesn't sound right what's happening to you. If you have them secured correctly, it's time you call them and make a big deal about it....
I am praying for you and I hope this nightmare will be over soon for you...I hated the time I had my drains on, so I can only imagine what you're going through...
Hey girls, there is a recall on docusate sodium by Rugby. See link below for info just in case someone has or is using it:
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I've called the surgeon. We think it's because of the emergency surgery I had 4 days post-op for that bleed. They must have come loose then. It's weird, even when my husband took it out about 4 inches was still inside of me it just didn't hold suction. I'm going to have surgery again next week and they'll put the drains back in and clean out the area and hopefully I'll be good to go. So I'm filling up with fluid right now, but the surgeon thinks I'll be fine until surgery on Monday or Tuesday.
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Crossing my fingers that all goes well tsoebbin
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