Single life after a mastectomy
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BB- the MO I see is not specialized in bc, but has a good working understanding of it. He is a researcher and keeps up on all the changes with treatment, including the AIs. He is an MO for many types of cancer, one of my friends who has a blood cancer sees him too. I think bigger cancer centers may have more specialization in medical oncology, but I live in a smaller city.
And yes, I understand the lack of integrated medicine in all this. Pretty common here in the US. The PCP should be that point, but is not always. I have been with my PCP for 20 plus years and she has a good working understanding of my overall health, but get the most help from my MO and endocrinologist these days. My BS is the least helpful, but may be done with her by this summer.
I see my PCP for some of the other stuff like my asthma, etc. If I have something that does not feel right, I sometimes go to her first to rule out anything more serious. For me, I take a combination of advice from them and that has been working. I make sure my PCP gets copies of everything from the specialists. Most of that is in my electronic chart for the majority of them are now part of the same system.
The AIs can be a culprit in many systemic issues. Bone health, weight gain, joint issues are common problems. Not sure about weight loss or neuropathy. One thing you can do is to ask for a break for a month or so and see what happens? I did that when I had such bad problems with my feet starting out on the drugs the first six months. I was on the anastrazole thread and someone said they did that to let the body have a break before they continued (or made the decision to stop). Sometimes stopping short term will show you what is contributing to the problems? I immediately felt better with my feet and also lost 10 lbs right away. That told me that the drugs were contributing to my weight issues and also my foot problems. My feet were better after the AI vacation, but of course the weight came back on. I am following the recommendations to get through the five years and will be done around this time next March. Maybe instead of giving them up, you should ask for a vaca from them?
And if you have an apt this week, all you need to do is reschedule those other apts in the next few weeks. Just won't wait months please?
Gotta get going to my day. Wishing everyone a good week!
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BB- welcome friend. Here to support each other with things that can help!
You enjoy your day too!
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HI friends. Went to bed so late trying to do an assignment.
Bb I hope your doctors start doing more for you.
The weight loss must be enough for them to look at you close. Every time I see my family Dr she asks have you loss weight? I usually say "why do I look like it?" She then smile and says no but keep an eye on it. Last time I said I do all it take to lose weight yet I don't .I stopped at 140bls and nothing else. But she said if we loss weigh we need to do tests and make sure all is ok. You have been thin for most of your life and maybe that is why they are no reacting ?
Today my nephew turns 18 . Yes they were born 2 days apart .
I remember my sister's exchanged babies cuz one had a premature one and the baby had no enough power to suck on her 3d boobs.lol the boy was the strong one so they used to breast feed each other's baby .
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Oh bb I love you . Please push for an appointment and also remember to say to the person who makes the appointments that please put u in a list for in case of cancelation. I usually do that so in case someone else cancel they take my #call me and ask me if I can make it . Do it . If they ask you what is that u say is a waiting list so if anyone cancels you know I am urgently in need to see my doctor so u can move mind up. Lol
Yes my family is very very close here is the picture of them celebraring the kids birthday yesterday.
bb I know is not easy but see how I am pushing for more information or MRI or something just to make sure I am dealing with only scars and no a surprise I can't handle .
Hope you all have a good Sunday
Sending you all hugs.
Oh simplicity I wanted to tell you a friend of mine had her surgery on Jan 10. And still not healing so her chemo has been postponed it seems is not Un usual the healing of wounds can take some time for some. Hope you are better. I can't remember but I think they say you need one more surgery? I am glad you are doing some reno but be careful I did that too and it was not so good for my body.
Lili I also like bb hate that you don't have a date yet for your reconstruction but know you are getting strong every day and when the date come your body will be ready. Keep positive it ll be ok
Love you all
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bb lol even at my bmx where my pathology test was margin no clear I never got an urgent call I had to wait the 17 days to know. I guess that is why I was so chocked when I got the results ?
But my appointment is for March 29th but tmw I will go on my lunch time to the hospital to pick up the cd. With images at least I ll be able to see the scar and size ? Maybe after tomorrow I may get a call since she may have the results? Who knows this doctors seem out of sinc for example is like they don't have a few seconds to review our chart before they see us. In my case is like every time I see them they have no idea who I am lol what happened to me .like they are meeting me for the first time. I now have more patience than before cuz I figure it does not provide me with any good to get upset over it so I bring my crochet and I sit there and crochet wile I wait. I also observe all people in the waiting area how nervous they are how stressed the room feels .is all so weird I now am in a different state of mind as if I do not really care for the news this doctor is about to give me . The look in the nurse face when she saw the word URGENT in the MRI paper was of sadness and as if she wanted to give me a hug and inside my head I was thinking hum she seems as if she needs a hug ha ha ha lol bb I am a crazy girl more than before my sister if she could be here she could laugh . I didn't know you declined the MRI but I tell you when I was there I was all good relaxed and up for it. But the moment they sticked the catheter what ever it is called in my arm I felt sick I kept thinking oh crap I wish I didn't ask for this MRI lol I am a big sizi when it comes to blood and needles I wanted to run away ha ha ha hut I took a selfy to show my sisters it was all ok here u can see me lol at that moment playing brave face lol
And them outside the hospital
That o e bihind me is where the therapist was working on releasing my cords. The rehab lol
Anyway bb u silly girl lol u push me but u Dont get your MRI? Lol ok keep an eye if the lump changes u call back and say u changed your mind and u want it now lol
Talk later need to finish 85 journal entries
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lol bb as soon as the weather goes well here u ll see me with my poles outside lol this winter just gets in my bones and so I find school Tobe my only sorce of scape. But spring is around rhe corner so I plan to take it by the horns lol
I am baking my bread now for the week I just finished 50 accounting entries 35 more to go.
But I need to take a break so I am making a coffee and waiting for my bread to be done .
It's already 5pm so I won't have any but tomow morning breakfast will be good bread and ham and eggs lol
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ok BB I am going to talk tough now as your friend, PLEASE get yourself to a Doctor. NOW.........I took Letrozole and it made me very depressed and my back, hips, shoulders sooo painful, and like you I had pre existing condition.......I also had heart and breathing problems, high cholesterol. I stopped taking it and everything went away! After a couple of months I took Aromasin instead and when I started feeling rough on those, albeit at least 80% less than on letrozole, I stopped for couple f months, took Boswellia, a natural anti inflammatory with anti cancer properties,for a month then went back on Aromasin and carried on with Boswellia, I have significantly less symptoms than before.
You are in a vicious circle and going downwards in mood and only you taking action is going to change that, I think you are worth it, do you?
When you go to the Doctor take a list of all your medication with you, including dosages, and your blood tests, and ask at every appointment if there are any contra indications.......
Please do this I know its exhausting and depressing but you need to get out of this medication trap......
Xxx
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humm ok I am so glad lili you are so wise.
I am so bad with medicine but I tell you something bb you go girl you take a list with you. And trust me I have done it where I have a list of ? Then they talk talk talk then I leave and I don't even remember taking the list out of my bag so now I have it in my hand and at the moment they are saying good bye I said oh yes pls give me a second I need to double check I got answers to all my ? And they usually have no choice that to answer me. Last time I had with me the paper with some new oxigen treatment and again I did not ask now I ll bring again and keep it in my hand instead of my bag. Lili has a very good point.
I also feel the reason I was able to go back to somewhat normal in term of getting up every day no matter what was that I take no metication I refused the tamoxifen and all others so I bet the drugs se have a lot to do with your pain and state of overall? Once they change it maybe all ll improve. You have nothing to lose so tell them that you need help asap. That they must change something so you can feel better.
I will try to do some yoga streach now will have a hot shower then continue this assignment is giving me grey hair lol
Let's try this.
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aromasin works differently to the other two BUT it is vital you take a month off between stopping one and starting another. This was emphasized to me by a leading breast cancer oncologist I consulted privately, if you go straight from one to the other Then side effects are worse....
I get how tiring it is, I never get answers either, and I have to take the lead, hence paying for private consultation, then I tell normal Oncologist I have changed......they don't want to listen to side effects here and protocol rules.....
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good morning friends here I am I got to the hospital atb 7:30am I msg my team at work telling them I will be late lol I just want rhe cd with images s bad lol so got here they tell me the lady with cd do not come here till 8:30am and that even if I am the fist one my cd won't be till 9am which mean I ll get to work around 9:30 soo dame late I ll have to work through lunch and stay a bit late too but I rather do that and have a look at those scars myself. I ll do that tonight after school so I will take pictures to show you in case any of you know how to read that crap?
Here I am all alone
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hi sorry I just got home is past 10.pm
OK so I am in my bed trying to understand and I can't lie to you guys I am scared I cam see there is defenately something going on on the side but like we know I am not capable of making sense but here u can see and be scared with me ?
So here we can see the difference of the 2 implants how the one on the right is been swizz out of Chape?
Wait let me post more
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ok now see it here
What is scaring me is the things I see inside my chest so different from the left side
what is that?No see the implants here
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and what are this 1.2mm thickness and looks like tumors to me
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I am freaking out
This dies not look good
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bb where are u? Maybe u went to sleep?
Any way I ll take a pill to sleep this images are no looking good so far. I'm they fin something that ll move me to stage 4. WTH?
Anyway any thoughts?
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Enerva, I hope you get some rest tonight and get a report from your docs tomorrow. I can see where trying to interpret those scans as a layperson would be stressful. Hoping for good news.
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hi yes thanks
We must wait until I get the report
Let's hope for not so bad news
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Morning girls no to worry I am ok
I will wait I think is is all the encapsulated thing from scars we must just forget for now.
I have my first fun class tonight and I ll enjoy it even though I am supper tired and wish I could go home lol
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E- was there no report to go with the MRI? Usually any type of scans include those? I was afraid you might see something and worry. The doctors need to advise you if what is on these films is a concern or not. Scar tissue can look and feel like tumors.
I hope you can enjoy your class tonight.
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hi hi, well the cd was very very slow in my laptop and the only screens i found were the images but when i see the dr. she will give me some kind of report i will ask her to if not she must send 1 to my family dr and i ll get it from her.
No BB i wont call, i don't really want to be told i must wait till the appointment date
is ok i will not stress over it any more.
my only worry is that i want to find the name of a ps and i have been on google with no luck is the one in this video.
a video i watch in 2012. but for more than i watch the video i cant hear the name or make it up ;(
can any of you tell me if you hear the name clear?
i need to try to get a referal with that guy lol
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Enerva, my MRI reports have loads of lumps and things on them, look very scary but all are benign. either scar tissue, fat necrosis etc.........BUT you need the answers, don´t torture yourself and wait til the appointment, ask them to email you the report....I totally agree with BB (who is going to be taking her own advice and seeing a Doctor very soon as you know........), please get some answers ASAP...........
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Ok girls the thing is that this doctors are not good i will call her secretary and see if there is any way to get a hold of some kind of report. i will also try and see my family doctor cuz i have the cd and she maybe able to have a look?
I agree with you all there are so many lumps i was like holy
is it c everywhere? honestly that is all that came to mind but i have been none for no knowing the images in the past i usually see things i think are something then they say nothing so is all very confusing.
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E - i hope you got some sleep last night.
pls don't read those images, we are not trained to read them so pls don't scare yourself. and i believe if it's something bad, the doctors would contact you ASAP and not wait. so i took it as no news is good news.
is it a Canadian thing that hospitals/labs just give you the images without a report? i don't get any of them unless i ask. usually i get the reports not the images.
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Hi, well here we are entitled to have our images lol we just have to request it and off course pay the cd lol
Do not worry i have all my cds. lol even if i have no clue i always take it .
I did call the secretary and she told me that my BS only have 1 day a week clinic lol so no way i can see her before that day so she told me to wait one more week. But i managed to make an appointment with my family dr. to follow up on my physical from 2 weeks back ? i ll see her tomorrow noon so i ll ask her if she can have a look at the cd but i bet she may not want to. they all want you to wait for the specialist to tell you any news. anyway i took a pill and i managed to get some 5 hours of sleep.
I should do the same tonight
No to worry i am ok i ll wait i am supper stress with other things so i wont think about it any more i just want to find the name of that good fr. so when i see my BS if she says all is ok i ll ask her i would like a referral to see that guy and see if he can do something to take the scar or do some fat grafting to minimize the pain etc.
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E- good to hear you are able to get in to see your PCP this week. I hope your apt goes well tomorrow.
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I found the name of the dr. Turned out his name is shown in the video but so fast I missed it. Dr. DOLNAD DOWNS MD Great doctors but not here both are in usa. I thought they were talking about saint joseph hospital here but is actually the one at Indiana lol oh well there goes my hope for some one to deal with the encapsulation issue. If nothing else bad present I ll just keep on streaching and massaging it on my own . There is nothing else I won't be able to get any Dr. To agree here.
Just took another pill class was great I never knew there could be so much to learn about plants lol is so strange how can there be so much I did never learn about plants.
Night night ladies
Oh I am keeping this things from my family I don't want to tell them about the images of the MRI till I know what is going on with it. And even is is not great news I have decided not to share with people at all. Only here you all know what goes on with me .
Sending u guys hugs.
Is back down to -2 here
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BB- I am glad you are going to give the ortho pain specialist a chance. Worth trying to see if this solution will help you to be able to move around more and have a better quality of life. And my attitude towards doctors is I don't have to like them as long as they are helping me with my problem. Orthopedic types don't always have the best bedside manner either, I have worked with a few and known a few others. I hope he can help you to feel better and get moving.
I wish you luck with the new plan of care!
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hi sorry just got out off school
Family Dr. Was not able to view my images she did not even have a cd reader on her fancy pc.
Anyway the blood results are good n urine all good.
I just have to wait till the 29th to see the bs
She ll look and give her honest opinion then.
It is so cold again
I am super tired. Hope I ll be able to rest tonight Send u big hugs
Can't wait for Friday
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Morning ladies
BB, glad you have a plan. Back pain really stinks. PT will do you some good in a lot of ways. I've been that way about my bed when I am not doing stuff. Just don't want to get out of it.
Lily, I find that here too. Dr's really just don't seem to care once the initial stuff is over, lucky if they do before than. I know one other patient of my PS's and she is not a happy client and is still dealing with open wounds. Oddly, we met here on BCO
Then IRL after her BMX at the hospital.Enerva, hate that you have to wait. I haven't had any breast scans since DIEP because technically, I have no breast tissue. I have SOOOO much scarring. Don't know how you are doing classes and life and this.
Jazzy, June, hope you and everyone else is well.
I'm having a hard time adjusting, balancing. Started seeing the EAP therapist again, a new one (via my employer). First session Monday and it was nice to vent. I began crying as soon as I started talking.
There's no guide once you're done. And while I was down for the count (1.5yrs-pretty much) life kept coming, kids kept growing, clearly lol Everything I do or can do has to be done different as far as my core with all the surgeries. My PCP says to give myself a good year.
Anyway, therapist wants me to do a timeline of my life. Pivotal moments. Phew. All my years of therapy and I have never had this for homework. She also wants me to research EMDR therapy, which I have. It focuses on creating new neuropathways in the brain. The barin and heart battle-classic. This should be fun.
Hope all have a good one and thinking of you all, always-even if I dont post much. Love n hugs
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