Calling all TNs
Comments
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Lisa we don't have to pay anything, not a cent. The Lodge is completely free and run by the hospital. It was the ideal place to be for the reason we had to go for. We learn't there were a lot of people there with the same complaint and could compare treatment and diagnosis but sadly there was also many people with worse than what we were going through yet they still managed to laugh. It was really like a wonderful holiday because apart from the half hour of our treatment every day, which we were picked up and dropped off at the hospital and then they waited to take us back to the Lodge we could do anything we liked. Some had naps, others went shopping in town, we even went to the movies and to the casino and had a ball although I didn't win anything. All we had to do was to wait for our meal times. It's overlooking a beautiful lake and the town was just full of great shops, I had a ball in them. The good thing about it is we still all keep in touch and will meet up. Some people came from a long way away, about five hours by car, so they used to fly those people down still at no cost. I was so lucky to be there.
Oh yes forgot to mention that if you need assistance your spouse or support person can come too and they also had family units.
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Lisa remember everyone is different, but with me the 'thickening' was internal- just above my scar- it was not sitting within the top of the scar. My actual LX scar is smooth. With careful feeling I thought it felt more prominent than the surrounding scar (hard) tissue it seemed to be embedded in. It showed on ultrasound as a darker somewhat circular area amongst the rest of the scar tissue (from rads and surgery). The Dr. who did my biopsy said that it was slightly darker and more dense than the rest. I hope this helps.
Arlene so glad you have a plan and I can see your in full fighter mode-you go girl!
Hope everyone is doing well
Shari
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CockerSpan, - that radiation set up sounds AMAZING!! I am sure that most of us who went for rads managed to squeeze it into our work day, and family assumed all was fine, and we were super women who could do EVERYthing. If I ever need rads again, maybe I will move to New Zealand!
Greenae, - I am so glad that you have a plan in place that you are comfortable with! Will you be treated in Manhattan or SI?
Slv, and all others here, - stay strong! (and WARM! It's freeeezing here!!)
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hi anothernycgirl I am being treated in the city and just found out I get to keep my nipple. Woohoo (I think?)! Surgery one week from today, I am told its a 23 hour stay. Not sure if that is good or bad? Trying to get my pre-op tests done. Jeeze, Used to be able to get it done at the hospital. My priority, of course, is to get a good haircut. Trying to stay strong.
Thanks for the help, everyone!
Arlene
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Toby I had 7 weeks of rads 5 days a week, because my Radiologist said, "Cancer doesnt grow on weekends" Wink!
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Greenae, - good that your date is set and you are underway with pre-op tests. I wasnt given the option re nipple, - i would imagine that is a good sign if dr feels you can keep it!
Will you be able to have chemo close to home rather than the city?
Stay warm and have a relaxing weekend!
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thanks Meadow for the smile!!!!
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Hey anothernycgirl...I think I would prefer to go to the city. I love SI, but I trust NYU. And it's freezing! I just got home from hearing my son's band play. BRRrrrrrrrrr! And Yes, I am so much calmer knowing the plan is underway. Thanks so much!
arlene
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My wife was diagnosed in April of 2013. Because she had had Adriamycin 17 years prior, for lymphoma, Adriamycin was not an option due to lifetime limit. Doctors at Vanderbilt in Nashville explained that giving more Adriamycin could actually cause a serious leukemia that could kill her in less than 2 years...also a risk of damage to her heart. That said, treatment was Cisplatin and Taxol, bilateral mastectomy and prophylactic oophorectomy (because she's BRCA2 positive). Coming up on 2 years from diagnosis and, so far...so good (praise God!).
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I could really use some prayers and positive thoughts. About a month ago (it was actually the day I got home from the hospital stay from my port removal infection), I got up out of the recliner and felt a crackling, pulling sensation in my thigh and realized the top of my thigh was numb. I thought I pinched a nerve and let it go, but mentioned it to my PCP last week during a routine appointment. She immediately referred me to ortho who ordered a MRI of my femur, hip, thoracic and lumbar spine. I chose to do all the scans at once, so I'll be in the tube for 2.5 hours this Monday. I've had ongoing back rib and spine pain since the middle of chemo last year, so on one hand I'm glad to finally evaluate things, but I'm also terrified. Life is just starting to fall back into place and good things have been happening for me and my husband. I pray this isn't the bubble bursting. I have a quote on my fridge that says, "When you live in fear, you end up living the life you were afraid of." I'm trying so hard not to live a fearful life, but times like these are so hard.
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Dear Ally, Please try so hard to fight the negative thoughts. You are in my thoughts and prayers for a swift answer for your thigh pain that will offer you sweet relief from your fears. Chances are excellent that it is what you fear. You should feel good that you have been so extremely proactive in getting the scans done. (((((Hugs))))Paula
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Let me try again...Dear Ally, Please try hard to fight the fear. Chances are excellent that it is NOT what you fear!!! You did the right thing by getting all the scans out of the way. You are in my thoughts and prayers for the best possible outcome and relief from your fears. (((((Hugs))))
Paula
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I support Mom Moms input.....but have added yiu to my prayer list!!!
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Ally, - the drs are super cautious and look into everything, - which is good.
Dont let your imagination run away, - think GOOD thoughts.
(I once read that 'worrying is like paying interest on a loan that you dont have yet!' )
Sending hugs
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Allydp, I'm happy you are getting things checked out because you will then be able to relax and not let those little dark fears get in the way. I have an inspiration board and one of the things I have is - hope sees the invisible, feels the intangible and achieves the impossible.
I know that it is sometimes it is really hard to live life fearless but it's also important for us TNers to be very aware of our body and you are being proactive. My MO ran a complete metastatic work up when I complained of hip pain and it turned out to be a cyst. Stay positive and know there are many benign possibilities for your concern. I'll be thinking positive thoughts and hope your MRI goes quickly. Please know we are here for you!
Shari
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Arlene, glad you have a plan and you're feeling calmer.
Shari, still praying for you!
Ally, we'll be in your pocket, praying Monday. I'm ready to ask my PCP to order a possible CT scan for some off and on lower left abdominal pain. I didn't think to mention it at my Onco checkup because it wasn't hurting then. I've had some painful urination for awhile and several urine tests and a culture have come back negative for UTI, so she said she thinks it's non infectious urethritis, but last night I started having a stitch like pain in my mid and lower left abdomen. It got a little worse in the middle of the night but wasn't as intense when I got up. It's been happening off and on but hasn't got too bad until last night. Also before it wouldn't last long. Thought of going to the ER but don't really want to be exposed to God knows what in the hospital! I am just tired of wondering if it's gyno related, urology related or gastro related! I worry about everything you can think of from kidney stones to Cancer or infection, appendix, bowel obstruction or perforation, you name it! I have had two recent metabolic blood panels come back normal and a normal CBC, normal Pap test,but something's going on! I'm ready to ask for some sort of scan but at the same time terrified to get a bad result. Ugh
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Luvmydobies, you know your body better than anyone. If something doesn't feel right, you owe it to yourself to get answers and peace! I know with myself, I tend to let things go to a point- then I investigate. I guess it's similar to the 2 week rule. Sometimes I think I over react to body pain issues but I guess not given recent events. Now I truly believe we should trust the signals our body gives us and expect to be given answers. No one else will advocate for us so don't feel bad asking for further tests if the 'usual' panels are not showing anything. Call your MO tomorrow! We will be there with you and Allydp and Greenae and everyone else!
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Thanks Shari! I've had stitch type pains before cancer and thought it was gas or something like PMS, so it's not totally out of the norm for me. I had a perfectlynormal colonoscopy last year, so I don't really think it's my colon. Also my menstural cycle has pretty much stopped due to chemo and my doc had thought this was like a functional ovarian cyst when I first mentioned it, but I haven't had a period since December and before that I had some bleeding in September then that stopped and I had one regular "period" in December. I did have this kind of pain before those bleeding episodes. The Onc said it was "normal" for my cycle to be sporadic and it may stop completely,or come and go before normalizing. He told me BC doesn't spread to the bladder and since I'm TN and BRCA negative that it would be extremely rare to spread to the female organs. I love him but he's very anti scans! My PCP would be more apt to order one so I'm calling her Monday. As far as the burning is concerned I notice it more when I eat things that are tomato based or spicy so irritation does make sense because my mouth will kind of burn too. She also mentioned Interstial cystitis which causes UTI symptoms but there is no infection. She may refer me to a Urologist but I hope not. There's just so many things it could be and I'd rather just get a scan to hopefully rule out the bad stuff.
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Ally it's so hard for us not to live in fear but after TN every little thing makes out minds go into that dreaded recurrence mode. Remind yourself that your doctor was onto it straight away and so many are not. Sometimes you can pull muscles and not even realize that you have done it, or even just twisting a certain way can start giving pain. I had a pain in my normal breast so much so that I was convinced the cancer had spread to my good breast. I had scans straight away and nothing was found. Once I was told that, I have not had the pain at all since. Suffice to say that my brain went into overdrive and I gave myself a few days of extreme worry for nothing. Hopefully things will be ok and you and you and your husband can go back to all those good things that are happening for you. Will be in your pocket and saying a prayer.
Luvmydobies you are our dear little worry wart and everyone on here can understand that. All of your tests that have been carried out are normal so could you have a food allergy. Have you thought about maybe you are gluten intolerant. If you are this can play havoc with your stomach, bowels and every part of your body. You could try cutting out those foods for two weeks that you think may be the cause and then introducing then back into your diet one at a time and see what reaction you get or you could ask your doctor for a referral for a RAST test (radioallergosorbent test which is a blood test to determine what foods you may be allergic too, or there is even a saline challenge test. At least this is one way to rule out if it is allergies to food that is causing your problems. It's time your doctor sorted this out for you. It's very real and you deserve to find out what is causing so much pain. Sending warm hugs.
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Ally I will be praying for you.
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Allydp, positive thoughts heading your way!! One year ago today was my last chemo tx!! So much has changed from a year ago! Surgery, radiation, 3 reconstruction surgeries! Now just trying to enjoy life and my family!! I don't post much but today was a milestone in this beast of a journey!!!
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Thanks for the input Cocker! I am unfortunately the worry wart! Ugh, sorry... I was tested for Celiac and it was negative. I don't think I'm Gluten intolerant because my GI doc didn't think I was last year. But I'll ask my regular doc though. I notice the irritation more when I eat things like salsa, tomato soups, and other spicy things. But I grin and bear it sometimes because I love that stuff! I have cut down though. I will ask about the allergy blood test. Thanks! I'm mostly concerned with the pain right now. I assume if it were my appendix or some bad infection or perforation then I would have fever or be a lot worse since it started yesterday. It's not worse tonight so far. Knock on wood. The pain is on the left and not the right. I have had kidney stones before but I think it was worse and I felt sick to my stomach. They didn't do anything for me though except tell me to drink lots of water and they did pass. Plus that came on suddenly and the pain moved down as the stone moved.
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Luvmydobies we all worry at times but you have had this problem for so long. I think you can safely assume it's not appendicitis. The pain usually starts in the tummy (around the navel) and travels down to the right iliac fossa but there are some people that only get it on the right side. You may get a bit of nausea or a touch of vomiting, but not always. You may get some slight diarrhoea or alternatively constipation, but not always. You may get a slight temperature, but not always. The best way for a doctor to tell if you have an appendicitis is to palpate hard your right side over the McBurneys Point (above the appendix). If he does this and it is your appendix you will nearly jump off the bed. Also another sure way to tell is if your white cell count is up and if they suspect appendicitis they will do this test. As you say, if it was a perforation you would certainly know about it and would need emergency treatment and surgery. It sounds very much like you have an allergy to tomato based products. Unless you check ingredients often you my not know they have this in the product. I would stay off of them for say three weeks and then introduce them back into your diet very slowly. If you then get a reaction you may need to stop eating them altogether. It's like peanuts. If you have a peanut allergy you can swell up just by smelling them of if they are close to your skin in some way. You have had this problem for a very long time and you badly need it sorted. I think I would go to a doctor you are comfortable with and spill everything and see what they can suggest for you but make sure they do something to put your mind at rest. Sending warm hugs and hoping you get a fast solution soon.
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Luvmydobies, I used to have lower left abdominal pain off and on for years. I thought it was gas or something because it always got better. Well to make a long story short, I had one episode when the pain didn't get better. It progressed to the point that it literally felt like I had eaten broken glass. My husband and I went to the ER where I had a CT scan and was diagnosed with diverticulitis. I took antibiotics and that took care of it, which is what happens with most people. In my case though, I kept having so many episodes that I ended up having to have a colon resection (just 3 months before my bc diagnosis). Not a good year for me!
Since you have had a colonoscopy, this is probably not your problem. Just thought I'd mention it, just in case.
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Jarris, I'm sorry to hear about your issue. (((HUGS)))! I've also thought about diverticulitis and my GI doctor told me the colonoscopy would've shown Diverticuli which are pcokets in the intestine where feces can get trapped and cause the diverticulitis(infection). I didn't have the pockets last year at the time he did the scope. But I guess that's a possibility. He also said diverticulitis is rare in someone my age but I do have a friend close to my age who has had it. I think it's time to demand the CT! Thanks for the info! I am terrified of antibiotics too though because of my C Diff history! Obviously I'd rather have an infection rather than Cancer, but I'm hoping for something rather harmless like an ovarian cyst or something. Though I know those can be complicated too. Ugh... Hope everyone had a good day.
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I also had c diff back in 2009 from IV antibiotics with a bad bout of diverticulitis (ended up in the hospital with that one).Thankfully, I didn't have any problem with the oral antibiotics that I took for later episodes. Maybe it's because they usually give you cipro and flagyl. If I remember correctly, flagyl is one of the antibiotics that they use for c diff.
By the way, I know diverticulitis is rare in younger people but, my mother had it for years and didn't know it. She was in severe pain at one time and was hospitalized for exploratory surgery for what they thought was endometriosis. They discovered that she had diverticulitis and her colon had ruptured. She was in her late 20's or early 30's. She is lucky to be alive. She is now 77. Anyway, hope you figure it out soon.
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Wow! That's scary! I hope it's okay for me to wait to see my regular doctor tomorrow! A possible colon rupture scares me. Glad your mom is fine now! My pain isn't constant right now so I'm trying to avoid the ER if possible. The cancer hospital where I am is great but the ER is not very clean and I'm scared of coming out with something worse than what I would go in with! I still have a good appetite and no fever as of yet. I take that as a good sign.
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Luv.....is pain near ovaries?
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Toby, it's more to the left of my navel but down a bit so I guess it's really a mid to low abdominal pain, but more lower than middle, if that makes sense. The best I can describe the pain is a stitch in your side type. I guess that's defined as sharp? It's weird because it's faint at times like if I'm just sitting in the recliner but when I go to sit up to get up it's there. Or if I turn over in bed it's there. Friday night it was worse (more noticeable) if I laid a certain way. It's scary but at the same time I haven't felt like I needed pain meds because it's not constant (so far). Knock on wood!Last night I was pushing on it a little and my stomach rumbled and I tooted a couple of times. Sorry but I am pretty gassy at times. Ha! Anyway I hope to get in with my doc tomorrow and at least get an idea but I just want a definite answer. I should've just went to the ER and maybe I would know something by now but I didn't want to be in there all night. Would've should've could've. Just hope I don't regret waiting!! Thanks to all of you for reading!
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Luvmydonies, - I hope you are feeling better by the time that you read this!
I doubt that it is your appendix because that is on right side, and I had mine removed after I went to ER when pain settled there and I was unable to keep food down. I think I followed the classic symptoms.
I wouldnt be surprised if your discomfort is gas! I hope that I am right, and you have peace of mind asap!
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