If you are not Stage IV but have questions, you may post here
Comments
-
Paula, I had a couple little nodules that showed up after surgery, and my BS went ahead and had them biopsied a couple of times. First one was just suture granuloma, second one that occurred was local recurrence. So don't be surprised if your BS wants to watch it for a while, wants to ultrasound it, or wants to biopsy it. Any of these is reasonable depending on your specific situation, but the main thing is to keep paying attention to changes and letting your docs know about them. And Chrissy is right - the most common thing is scar tissue or suture granuloma.
0 -
Wow, Chrissy, your a saint for keeping this thread going!
0 -
Romansma- I agree, I read these questions occassionally and the responses and am amazed at the tenacity and giving nature of Chrissy and others who respond to concerns..
Chrissy you are certainly a saint to many who struggle and have questions. God bless you for this. You are very giving and caring.
0 -
I agree, Chrissy you are a wonderful and caring person to keep this going. I am one of the ones that used this thread before being promoted to stage 4. It was great to have a place to ask my questions and voice my concerns. Thank you and the others that post on this thread for caring so much about the worries of others.
0 -
I had a CT last week to determine how many more RT I need -- everything looked good on that front, but the radiologist noted a small spot on my spine that they want to follow up with an MRI. I am beyond terrified - my rad onc talked me down and said that he would have normally overlooked this on another patient but because of my history he feels it necessary to rule out mets. He even showed me the CT. The spot really does look small - like 8 mm x 2 mm - and it's inside a vertebrae from what I can tell. But it was barely even a shadow on the scan. I am having a really hard time dealing with this even though nothing has been determined yet. I would normally think positively but I just can't see a positive outcome!!! I know it's common to get faulty scans and overzealous radiologists but I can barely function, this is consuming my mind. I JUST had a CT six weeks ago and nothing abnormal was noted.
0 -
flimsical please take a big deep breath and release it slowly..........let go of that unspeakable fear that you are holding onto. Your radiologist is being really careful and that is a good thing........that shadow could be anything including nothing at all and an MRI is going to give a much clearer view. It is much better to have the scan and know it is nothing than to spend the next months wracked with uncertainty.
BC is so sneaky that I would be breathing a sigh of relief knowing the radiologist is really on the ball. Hoping all is well for you.
Love n hugs. Chrissy
0 -
THANK YOU Chrissy - I just have to make it through the next few days. Worrying will get me nowhere I realize... but damn is it hard. I think what scares me the most is the mere possibility of having to tell my family. It's the most debilitating fear I've ever experienced and I appreciate your input, you talked me down.
0 -
the lumpy thing on my ribcage is bigger in the last two weeks, hard, and imovable. and now i remember my mom had a lipoma, , we kids called it her third boob! but it was big and squishy. but if you read my post on the hermit thread a few posts back, you will find out why i am frightened to see my breast surgeon tomorrow. dread fills my being. and the last two times i caaled her office , no- one retuned my call.
0 -
Kathec I went back and found your post on the Hermit thread about what happened with your doc........I am so saddened that a so called medical professional can act that way. Please keep your appointment and see if it was just a bad day but if it is her demeanor towards you again, please, please find another doc that will be more sympathetic to your needs. Regardless where you are on this journey, we all deserve to be treated with care and dignity.
As to the lump on your ribcage, it could be a cyst but really needs to be looked at properly and even biopsied to make sure it is nothing to be concerned about.
Love n hugs. Chrissy
0 -
thank you chrissyb. i am so glad of women like you here on bco, bless you
0 -
CT typo?! WTH? How can I know what is or is not right on a CT scan report if they make typos? I am so angry about this. I know people make mistakes but this is the second time I've been told that something on a CT scan report I have is a typo. Two different places! How can we trust what these people say if typos are a "normal" part of their work?
Sorry, just needed to vent. I have a call into the radiologists that read by scan and am waiting on their reasoning for a typo on something so important to me.
Anyone else had a typo that they found later wasn't an actual typo? Sigh.
0 -
wrsmith2x I'm so sorry you have had to deal with bad typing as well as scanxiety. I haven't had to deal with that situation as all reports are checked by the radiologist and signed by him/her prior to the report being handed to the patient in Australia. It is a double check to stop that sort of thing happening.
I do hope that you get to speak to the radiologist soon and get it all sorted. Oh! by the way, you are welcome to vent here anytime you need.
Love n hugs. Chrissy
0 -
Chrissy,
You are a blessing from God for many women/men here. I am thankful for you and your time.
0 -
I have a lung condition that is as dangerous as cancer for me called Hypersensitivity Pneumonitis. Basically, I am having an allergic inflammatory response in my lungs that creates masses and destroys my lung tissue (we can't identify what the culprit in my environment is). Mine seems to be particularly aggressive and came back only a few months after having a plum sized mass removed via thoracotomy. It is not confined to one lung this time, it is in both.
My pulmonologist is at a loss on how to help me, so he referred me to the Mayo Clinic in Rochester, MN. Mayo sent me a booklet on local o hotels and said that most, if not all, near Mayo have shuttle services.
I need a clean room with absolutely no smoking near.
Has anyone used any hotels near Mayo in Rochester, MN that are reasonably priced (or better yet, offered a discount for patients?) and had an enjoyable stay?
I was not sure where to post this, so I will try in several spots on the boards.
I realize it is not cancer, but it is certainly as dangerous for me at this point since there is no cure and the HSP could eat up lungs. I hope you don't mind me posting here for help. I am hoping someone has had some appts. at Mayo & needed a hotel room. I could use a little help.
Thank you for your help!
0 -
oh, cinnamonsmiles. i am so sorry to hear of this for you. i was reading on another thread where a lady was talking about how great the hotel staff was where she stayed near the mayo just the other day. if you go to the search box at the left, you might try search term "good hotel near mayo" and see what happens. i search that way all the time and something always comes up! and chrissyb, i just wanted to let you know, the bs treated me with much solicitude this time. i had decided i would go in there with an open mind, and it worked. of course i did take a teensy anti- anxiety medicine, at the first appt of the day. they took so many pictures, and then ultrasounds. said it could be enlarged lymphnodes, fat necrosis, or cancer. biosy next week. so thank you
0 -
cinnamonsmiles I'm so sorry that you are dealing with this and I'm really sorry I can't help you but Kathec has a good suggestion for you to try. Good luck with both finding a good hotel/motel to stay in and getting some answers for treatment for your lungs.
Kathec I'm so glad the visit went well and the doc was far more solicitous toward you........you deserve it. Good luck with your biopsy next week and do let me know how you get on.
Love n hugs to both. Chrissy
0 -
.... i am getting worried about my biopsy. because i see on the papers they gave me, that the size by ultrasound is 3mm. and palpates much bigger, their words. and then i have been putting my medical papers in order, from everywhere, and i see from original dx, that there was a small right internal mammary lymph nodes measuring 6 x 3mm, too small to be biopsied. thier words. so why would a new smaller "thing" than that internal mammary node, be big enough to be biopsied, when the other one was bigger, and couldnt. after all my problems with this place, i am having a hard time trusting them, and what if they miss it completely. or what if it is bigger than they say? it is truly causing pain tho, even with pain meds. and as soon as they felt it, it was all about that, and i never did get a chance to tell them about other "itchy' spots that hurt including deep in my upper arm and near my elbow, and more places on my ribcage. i feel like i never get enough time. but i have noticed on my three week so far holiday from tamoxifen that my lymphedema arm is much smaller while just treating it the same way as i ever did, so am happy about that!
0 -
Kathec, is there any way you can go somewhere else? If you are not happy with what is happening at your current place of treatment and if your trust for them is non existent then I think it would be a good idea. When dealing with this kind of illness, it is most important for peace of mind that you trust in the people who are treating you.
Feeling rushed at your appointments is not a good thing at all. I know the docs get busy but you are entitled to be heard in full with your concerns. I don't know how your appointment system works but here is Australia we can book a long appointment time if we need..........do you have that option over there?
The questions you have are legitimate ones and need to be answered by your docs.
Love n hugs. Chrissy
0 -
Thanks chrissyB. i am so grateful to you for coming here, and your willingness, and breadth of knowledge you have amassed. And, your compassion! At the very beginning, i was very happy with them. i do love my gynecologist there, and oh my. My lymphedema therapist there , truly has a gift, outstanding magical hands, and even loaned me her foeldi textbooks, and would always tuck extra short stretch bandages and gauze into my bags, and ahem, told me what the radiologist was afraid to tell me, that radiation could most certainly worsen or cause lymphedema. And i really came to respect my medical oncologist there, but the first time i met him, he looked scared of me, a small rather skinny woman, but i think he had heard by then that i ask a lot of questions! and they are very good at getting you in on your scheduled time, and... and... and... there are many good things about them. and it is an easy and pretty drive. 100 years ago, it was started by the jewish people, as a tent city for people with tuberculosis. and they have excellent hospital food, and cheap, too! and the first day i walked in the door, i did see hope on the people's with cancers faces. not like the place i had always taken my friend to that had a different kind of cancer, the people there looked ashy and grim, and the place was not too clean, but it was like a state run free clinic. so i think the visit this time, was better than the horrible last time, and this time after our brief visit, the breast surgeon did shake my hand. so i did not try to swamp her immediately with questions, or accusations about her behavior last time. i have been going back through all my medical papers, circling things, highlighting things. So i think what i would like to do is write her a letter, about how at first i admired her, and why, and then how her behavior 6 months ago pretty much frightened me. not any dx, just her presentation and behavior.
because i do think she is brilliant. and i would like to keep her. because she cannot demand my trust, but she must earn it again.
and also, 6 months ago, i could not have imagined the effort it would have taken, to start all over again some where else. that was my main reason. two weeks ago after stopping tamoxifen, i probably had the energy to do so, but wanted to get my medical records clarified and corrected before transfrring to another place, a daunting task. but i decided to go to the appointment with her with an open mind, and no mode of attack on my part. and she was gentle with me, but the main question i did ask her was will it be a core biopsy or a fine needle biopsy, and she just said, we'll see. so now i am afraid that it may be an open surgical biopsy, and she just did not want to tell me that, so she didn't. i am thinking if it is an open incision biopsy, i will know right away, and have time to ask my questions i will have written down beforehand. Does that sound like a good plan? if you have read this so far, you truly ARE amazing, and i hope i havent made you pull your hair out!
the main reason i am afraid, is of an infection and a worsening of lymphedema, i am full of problems on that side.
0 -
Kathec, sorry to take so long to answer you but I had to drive to the city for an MRI........all done now.
I get what you are saying Re all the hassle to move and if you truly like your doc then stay but do let her know how you are feeling about her either face to face or in a letter........it's important that you have really good communication. I had this problem with my doc and was on the verge of leaving and finding another........I had a bit of a melt down and told him in no uncertain terms to stop treating me like an idiot or a mushroom.......I wanted straight honest answers to any question I asked because I needed to know. Since then he has been perfect and rather than dictate we now discuss and decide which way I want to go. Hopefully you will get the same reaction.
I would also press for a proper answer Re what type of biopsy purely for your own peace of mind........a 'we'll see' answer is really no answer at all and allows our minds to run rampant.
Love n hugs. Chrissy
0 -
oh Chrissy, i had just written you this long lovely post back thanking you. and i somehow lost it. please do not apologize for leaving, especially for a test! Which i hope the results of exceed your expectations. and that the work you do here for frightened or concerned women, is a remarkable thing. but i do have to admit that i do feel a little frisson of happiness, when i come back and see the red box saying new! chrissyb has responded to the topic.. and you do have a nice smile. like you, i do have a meltdown when i am frustrated,but i get mad at myself for crying in front of them, for some reason. and i like the truth,too. so thank you, and goodnight, i do have to be awake in 6 hours. love, kathe
0 -
I found a great hotel a good price from one of the ladies on here. She has used the Brentwood Inn & Suites on 4th Ave. near Mayo, so my hotel is booked.
Thank you all for letting me post here. I may not have Stage IV cancer, but an equivalent that is every bit as dangerous.
I thank you for your kindness here on this thread.
0 -
Cinnamonsmiles I'm so glad you have your accommodation all sorted and good luck with your appointment.
Love n hugs. Chrissy
0 -
hello all,
Mum (stage 4, mets bone, liver, lung brain, diagnosed 1 year ago) has been suffering low blood pressure, dizziness upon standing etc. suddenly she has high blood pressure. Any thoughts?
Thanks lovely ladies x
0 -
Hi Papillon! Your Mum's BP could be rising due to the effect some of her treatments have had on her heart and it is needing to work harder. Keep a check on it and if it get's too high for too long talk to her doc as high BP can lead to stroke and or heart attack.
Hope your Mum is doing well other than her high BP.
Love n hugs. Chrissy
0 -
ok thanks, they were thinking of stopping herceptin for a while because of her heart. Maybe it's that. Thanks, as always you are so handy to "know" x
0 -
This question has most likely been asked and answered. I apologize in advance if so. Is there a way to differentiate between brain mets., chemo brain, SE's from other meds, and chemopause? I feel like I am losing my mind, in a literal sense. No focus, vision issues, no short term memory, personality change. I don't recognize myself. I will be talking to my MO about this, but appreciate any thoughts on what I should be asking.
0 -
Robin, I'm not stage IV, but I think I can answer this one.
You are more than likely suffering the effects of chemo. I'm not sure about personality change. I guess that depends on how specific the changes are. However, being unfocused, memory problems, & blurry vision are probably caused by chemo.
The memory will restore, as will your vision, so don't run out just yet for new glasses.
Blessings
Paula
0 -
thank you! The personality change is basically me saying, thinking and doing things I would never had considered. It feels like I have an evil twin residing inside myself.
0 -
Hi Robin, as Soteria has said, it sounds more like chemo brain than anything else........the change in personality could be from a combination of all the meds you are on but I think I would be making sure that my onc was aware of what is happening so he/she can keep an eye on you.
As in all things when dealing with BC being aware of changes and reporting them to the appropriate person is always the best way to go.
Love n hugs. Chrissy
0
