Team ILC Warriors
Comments
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Galsal, it is so nice to see you. Sounds like you are doing good. How is your reconstruction going? Doing okay with the tissue expanders? I hope all is well for you.
I am about a week till my diep, I am feeling calm (right now!)
Kim
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No, ma'am. No radiation, no chemo was necessary for my case. The flap attempt I had did fail although not for the common reasons. Mine was due to a genetic blood factor mutation that left me at high risk for blood clots, which did keep happening during the surgery. Afterwards the reason was discovered. At that point, I had to come off Tamoxifen and go onto an AI.
All the best to you and your journey!
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Hi Annette_U nice to see another photographer here! Sorry it's taken so long to respond, we had Easter and then ANZAC day here, so I took the opportunity to have a 10 day break! Feel nice and relaxed now
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I just finished TAC 3 weeks ago. Now, I'm swollen. One ankle is more swollen then the other but I feel swollen all over. Is this normal or should I be concerned? I'm also having trouble walking around. I exhaust easily. My legs just feel weak. Is this normal? I'll be having a double mastectomy in a couple of weeks. I don't know if I have the strength to survive the surgery. I'm getting very worried!
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Kaluha, I would call your MO and run things by him/her. I did Taxol and had SEs that showed up about 2 weeks PFC that sound similar -- achy hips and knees, very tight ligaments, swollen ankles (both). My MO said those SEs aren't super common, but they're not unheard of. I took Aleve for about 10 days, and it did help, but she had me stop because it is so hard on the kidneys. I suffered through another couple weeks, but I've been feeling like myself now for about 2-3 weeks.
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Kaluha, Bec is right. The only thing i can add is that you should be drinking a lot of water to get the chemo out of your system quickly.
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I went to the ER on Friday because of my swelling and fatigue. They did bloodwork, xray of lungs and sonogram of legs. Everything came back clear. I was told to wait and see. After reading symptoms of anemia on line, I think that is my main problem even though my blood work showed I was only slightly below the norm. I have cracks in the corner of my mouth as well that wouldn't heal. I am going to be drinking LOTS of water and eating LOTS of protein and iron rich foods. Maybe then I'll have the energy to go more that 10 feet and hopefully the swelling will go down. I have to get my strength back. Surgery in 3 weeks!
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kaluha - cracks can indicate low B12, zinc and magnesium.....in your shoes i would increase B12 particularly
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Lily, so good to see you posting. How have you been? I think of you often. I am 6 weeks out from my diep and doing pretty good. My pathology showed lots of pre- cancer in my good side
but still clean and nodes clean also. This damn ILC is so sneaky, I struggled for so long with my decision as you know. I feel validated I did the right thing. MRI and mammo showed nothing. Hoping after Stage 2 this fall I can put all this behind me in some way. But I also know I am a better and stronger woman for having gone though it. ((HUGS)) I miss your postings.0 -
Wow hi lemon, great to hear from you! Well done on getting your surgery over with and that you are at peace with your decision. Are you happy with your shape? I had a reduction last summer and started one fat transfers, had two but second one failed, lost everything done to that point and was very ill for weeks and weeks, just braved another fat transfer but feel right at the beginning as need so many more it will be well over a year before I get finished if no infections along the way...........and underneath I am still really devastated at my physical state, DIEP not a posibility for me now......but I seem ok on the outside........trying not to let bc rule my life......and by a fluke managed to get a different Onc who listens and treats me like a person, he looks at me when talking to me.....!!!! So things are a lot better but I still struggle a lot with me and cringe daily wherever I go
HUGS - or rather gentle squeezes...xx
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lemon, how long is the recovery from the flap,surgery? I did not get reconstruction when I had my mastectomy and I am looking for a PS who will do tissue expanders on radiated tissue. I am afraid I will,have to have a flap surgery and I am really turned off by the recovery for that. Your experience would be helpful.
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Hi smrlvr, good to see you. I had mine on May 5th. Honestly the first 3-4 weeks were tough. But now at 6 weeks I feel pretty good. I have no restrictions and have resumed normal activity. I have no regrets and they are looking good. Your in NY and there are so many good docs there if you end having to do it let me know I know some who did it there. I did my BMX and Diep at the same time, those that do it separately seem to recover quicker. I do know that here they do TEs after rads so I hope you can get what you want.
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Lemon, bravo on your decision about both. I too made the decision and bad things were found in the good side too. I felt so validated about the very difficult decision I'd made. It sure made it worth it to hope not having to go through this again, that's for certain!
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hello! i am new here . Can i join in ?
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Evgeniya, malista!
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thanks! my first welcome to my first ever forum i would do everithing to not to be a part of! but life is cruel and there we are. so what do we do? what can we do? eny advise on nutrition , diet, lifestile, positivness and how to face it with dignity shell things go wrong? how to find stranth and not to loose hope? how to make my mother not cry considering i am the only child? how to make my 8 year old boy to belive that i am going to be ok considering that his best friend mother just died of same thing? healp
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hi Evgenia - wow I thought this thread had gone to sleep it's been so quiet
As a fellow Aussie So sad you had to come here under the circumstances you describe -
Basically lifestyle nutrition is all the same old same old advice
Rainbow diet ( plenty of fruit and veg) , plenty of exercise , reduce stress, zero to minimal alcohol (3 std drinks a week)
Positive outlook comes from within
I hope you find a way to show your son your strength and positivity.
Xx
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Thank you NOCOMPROMISS! you are an ozy meance we can possibly meet one day! i want to meet girls like me . friends do support me but thay do not understand ( thanks god and i will pray thay never have to) . i need someone to understand. plus i am uneasy to not to be advised on chemo. maybe i should havedone it. i cant sleep. pluse sores from rads are hirting plus zolodex side effects not healping. and it can get wors ..... what to do?
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Hi Evgeniya - I'm on this thread too as I also had ILC as well as IDC
From what I understand chemo doesn't work as well for ILC as it is such a slow growing cancer. Chemo destroys fast growing cells and ILC isn't usually in that group of cells. Although your tumour was largish and you had one node. Most importantly you aren't HER2+ which is a guarantee for chemo.
My IDC was smaller than yours, but more aggressive at grade 3, my drs were on the fence as to whether I should have chemo or not. It was only when the pathology came in that it was HER2+ that they said I needed chemo. If I hadn't been, I wouldn't have had chemo.
So, don't worry about not having chemo - your drs have done what is standard here in Australia, and in fact in most of the world.You might want to check into one of the rads threads for advice on your sores, I didn't have rads so can't help there.
If you are having problems sleeping though - talk to your dr you should have some help sleeping so your body can heal through all this.
Trish
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Thank you ozy girls thank you girls of the world! got melatonin to healp sleep and from my research it somehow might help with preventing mets hopfuly. started with 5 ml now increasing to 10 with gole of 20 ml.
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Not sure if I have joined before but here I am !!!
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hi VictoriaSecret and welcome!
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Hi Victoriasecret,
We have the same stats! I am so happy to see you are doing well at 5 yrs out from diagnosis!
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hi Tessy
Looks like you had a UMx and recon on both - how r you finding your implants ??
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Nocompromises2013,
I had a mx on the right with TE placed in Jan 2013, then in Jan 2014 I had the TE removed and a Mentor smooth round mod plus profile gel (750 cc) implant placed and a lift on the left side. So far my implant has not done the drop and fluff thing! It sits higher than the lift side and the underside and overall fullness does not match the left side. I am thinking about doing the fat grafting to the right. I have an appointment Aug 11 with my PS to discuss my concerns. I didn't want to do anything over the summer because I was tired of being poked and prodded! Spent last summer recouping from chemo and getting 30 rads. There is a member by the name of Whippetmom who has a vast knowledge of implants and has a thread started called Breast implant sizing 101 if you need more information. Good luck!
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victoriasecret, Congrats on your 5 years!!! Heather
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hi Tessy - thnx for your honesty
I had/have concerns that reflect exactly what you are saying re trying to match old and new and suspected something would need to be done to my 'good' boob.
I hope your BS can help improve things for you - I have seen that 101 thread. Might go back and reread it
VS - always great to hear 5yrs+ stories. Thank you
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Hi ladies, I haven't been on this thread for a long time but you ladies are so smart and I have a question. I had neoadjuvant chemo from March till end of June.., 6 rounds. I had my BMX and ALND on August 7th. My BS told my DH after surgery that she removed all of the nodes on each side of the nerve, which turned out to be 11. I was told by my BS's nurse that the path report said that 10 of the 11 nodes still had active cancer cells. So assuming she got all the nodes from levels 1 and 2, I am wondering if a PET scan would show involvement in the nodes in 3, 4 and from there. I've never had a PET scan but I'm thinking that's what I need from here. I see my BS next Monday and MO on Tuesday and once again trying to get all my facts first. Thanks ladies.
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opps, Genny, I meant to post here, not on the 5 year survivor thread....
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Hi Genny - I copied this from a summary of the NCCN guidelines
3. After lumpectomy or mastectomy and surgical axillary staging with > 4
positive axillary nodes: Consider imaging for systemic staging, including
diagnostic CT or MRI, bone scan, and optional FDG PET/CT (Category 2B)It sounds reasonable to have a PET/CT in your case, but grade 1 ILC is notorious for not showing up on a PET and it exposes you to a hefty dose of radiation. If you think you want the scan, ask about it and make your MO give you a good reason why you should or shouldn't. Ask if a positive scan would affect your treatment plan (timing of rads, adjuvant chemo or straight to AI/tamoxifen). Then go with your gut. Let us know what you decide (and I hope you get the all clear if you do it!).
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