Why was I stronger DURING treatment than I am now?
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I am not sure when this gets easier and when we can quit having to be our own advocates to get anything done.I had been having pains in my abdomen especially when I ovulated for about a year and told my MO- I asked him should I be ovulationg on Tamoxifen- he basically told me I was not ovulating because Tamoxifen stopped that so basically said I was just thinking of my ovaries so that is why I felt pain- So really he told me it was all in my head.
Fast forward a year and went to my GP with an ear infection and I asked him should I be ovulating while on Tamoxifen I have this pain in my abdomen. He said well Tamoxifen is used for infertility at times so yes - and then pushed on my side and OUCH-- he said I do not like that at all and sent me for a CT right away and they found my ovaries are 7.8 by 5.5 by 5.5 cm so the GP said well U defenetly are ovulating and sent me for an US.. Which confirmed my large ovaries. He said because I am on Tamoxifen that the ovaries may not decrease in size. CT also found a hernia = GP sent me to a surgeon and a GYN. The surgeons wife is a BC survivor so he took one look at my ovaries and said I needed to see a GYN now not wait the month as that is when I could get an appt. Surgeon walked down the hall went and spoke to a GYN and she got me in the next Monday- Looked at my ovaries and said if she was me she would remove them, as with my family history and my bc and their size she wouldn't keep them. She said I have to have the old fashioned abdominal surgery as they are so large and if they were a cancer she would not want to risk breaking them trying to get them out of a laproscopic incision.
So on March 3- I have two surgeries - one for my ovaries and the other to repair the hernia- two surgeons but at least I wont have to be put to sleep more than once. SCAREY as I do not know if I have cancer again!! I have went into hibernation and just can't wrap my head around all this again!
I so wish I could take a pic of my ovaries that were " all in my head" and send them to Columbia where my MO moved. Makes me think Tamoxifen is not working for me- My new MO wants to change me to a AI a month after surgery.
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Hi Ladies:
So sorry to hear about another biopsy for you wintersocks.....hugs!
Ndgrrl: Wow! I am so sorry about your upcoming surgery....hugs to you too!
I am still dealing with a distended belly since September. The PS says "I have no idea what is happening." "I have never seen this before..." BUT no recommendations for testing or investigating.
I then returned to my GP - "This is not an area I know much about - and I have no idea what is triggering this.....
I then returned to gallbladder surgeon as my gallbladderr was removed in October. After some appointment and an abdominal cat scan in December -- she stated: I have NO idea what is wrong.
Now I have an appointment on March 11th to see a gastrointestinal DR.
WTF - my belly is flat in the a.m. - and then with movement or food - the abdomen distends and it is painful. Right now I look 8 months pregnant. I have researched my symptoms for hours on end each night after - pouring over medical journals. I can't believe no one is helping me through this....it is so frustrating!
If the gastro DR does not find anything - then what? I can't live much longer with the pain and distended belly!!
Sorry to vent. I am just tired.
Lisa
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Lili, go to a bigger hospital. I go to Memorial Sloan Kettering, all the way from Chicago because it's the best in the world. They see things no one else does. People come from all over the world. Let them see you, your scans, etc. It's your life!
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Tim: I am at Dana Farber and Brigham & Women's Hospital in Boston. You would think I receive excellent care, but your advice is well-taken. Maybe time to change.....this BC never ends! Lis
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That is unbelievable and discouraging. You would think they would have seen everything.
Still, you aren't far from New York. Why not make a trip and see what they have to say?
Good restaurants and museums anyway. I really feel for you!
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Lili-Ri,
I had something similar and remained un dx' for years, my belly was huge, like I had been blown up. and sore too. I was so uncomfortable and each medic telling me 'We don't know what this is'
Finally after the birth of my second son I became very ill, I suspected Coeliac disease and I asked a young doc if it could possibly be Coeliac. He said let's test. It was positive. It took me a few years to feel well. Now I never touch gluten. The disease came on almost overnight when I was 28. I was dx at 36.
perhaps as they are drawing a blank with you, you might ask..... .
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This is a coincidence. I was just reading a magazine and this woman had a distended stomach and no one could figure out why. It was gluten intolerence. Have you been checked? I have a friend who found out she had celiac at the age of 68! She'd had problems all of her life!
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Oh Tim.
That is a coincidence! Coeliac, as we say! Celiac as you say is very common but massively under dx'd. I had a blood test then a biopsy to confirm it. It often comes on after trauma, as I say it got much worse within days of my son arriving.
I hope you are well?
I am listening to music on youtube and wishing I had a nice man in my life! sigh....
Oh well, it's 2.06 am here, I guess I should go to bed.
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I've been married for 45 years and I'm wishing I had a nice man in my life too!
Do such things exist?
Feeling bad for all you've gone through, all we've all gone through. Wish I could think of something uplifting to say but I'm tired. Tired of it all.
I got a Zometa shot on Tuesday for my osteoporosis. It makes you feel like you have the flu for 2 or 3 days.
Has anyone here had it? In rare cases it can kill your jawbone. Terrifying thought. Well the first day I woke up with horrid pain in my jaw. Same thing the second day. Today nothing, thank goodness. And the misery has lifted, some energy has returned. But you know, it was one more thing and my resilience is running low. And I hate to complain because the drs checked me and said I'm ok but cancer being cancer...well, as I said I'm running low.
And my daughter is leaving for Korea soon. She got a job teaching English for a year. she is the light of my life.
But this is life, ups and downs. I just wish everyone good health. With that we'll find a way...
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Wintersocks, I'm sorry you need another biopsy. I don't know when this gets easier. I suppose at some point you get used to it, but I haven't gotten there yet.
ndgrrrl, when, oh when, will these docs quit telling women things are all in their head?? I would send a copy of the report about your ovaries to that original doc. He needs to be educated. I'm sorry you're dealing with all of this. I had to have the old fashioned surgery for my hysterectomy-oophorectomy 12 years ago for reasons similar to yours. I had a mass on an ovary. They kept assuring me that the odds are it wasn't cancer, but still needed to be careful about not rupturing it trying to get it through a small incision. Hang in there. I hope it all goes smoothly. I'm glad you finally got some docs who know what they're doing.
LiLi, I hope you are able to get a diagnosis soon! Timbuktu might be right that a bigger hospital is in order.
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My *female* oncology nurse practitioner told me there was no way the chemo could still be causing me fatigue, and implied that it must be depression (except I had no symptoms of depression other than fatigue). I told her that there are studies showing 34% of women still affected 5 years out from treatment, and she scoffed at me. Hey, the reports from the NIH are public record. You can read 'em online. It's not like I was watching Dr. Oz for my information. It's so much easier for them to blame the victim (patient) as it being "all in your head" rather than admit their own inability to reach a solid diagnosis.
Timbuktu, I don't get zometa but I get prolia, a newer one. I've been lucky in that I didn't get the flu-like side effect. It costs around $8,000 per shot and I need them twice a year! I told my husband I don't think my bones are worth that much.0 -
I've been told by several drs... never listen to a nurse. They think they know but they don't.
Obviously this one is dumb and arrogant and it's so frustrating when you are at their mercy.
Good for you, doing the research! In Breast Cancer for Dummies the drs say the same thing you
said and that it's something to consider when you are deciding to go with chemo or not.
I expect such ridiculous comments from my idiot friends, not from professionals. OTH, professionals make mistakes
too. There is this strange thing that seems to happen, people believe what they WANT to believe rather than what
is true. I guess it's more about them than us.
BTW,I know you're joking but our bones are definitely worth it! My mother had terrible osteoporosis and she wound up with about an inch of lung with which to breathe. It was horrible. When she first started getting it
she was in such pain, her back just collapsed in on itself. I called her dr and asked what was wrong with her?
He said Osteoporosis. I said "OK, so it's nothing life threatening". He said "Oh! It's very life threatening!" He was right. Thank God they have these treatments to stop it now. Although...everything has a cost...and i don't mean just financial.
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Tim and Wintersocks: I am now going to research symptoms. I would be so grateful if it is "just" celiac disease....thank you both for a new pathway!
All we as patients want to know is : what is happening? do you know how to explain what is triggering these symptoms? Will you guide us through this cancer process? The DRs are too busy to actually put multiple pieces of a puzzle! As a patient, they should be able to diagnose or refer us to another DR!
This process is grueling!
I too have osteoporosis! No Dr has ordered a bone density test since I was diagnosed in 2013.
I am so thankful for all your help!
Lisa
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Tim - I had the opposite experience from Drs vs nurses. My nurses were the ones I went to for concerns about fatigue - cus they'd had lots of feedback from other patients over the years. Dr's were nice about it, but their approach was more scientific. The nurses were more open-minded and experience based.
I was diagnosed three years ago and I still haven't regained my old level of energy. I'm never certain if its age, menopause, chemo or tamoxifen, but whatever it is, it's real. I feel like I run out of juice pretty easily. And my legs hurt. I recently took a two week break from Tamoxifen just to see if it would make any difference. But how the heck can you judge your well-being when it's the middle of a polar vortex, and you're trudging through snow three times a day with a basset hound? I still hurt all over, but I may have been a little less bitchy.
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Janet now that you mention it, sometimes the nurses are more in touch,
I remember when I first was going into menopause. I got heart palpitations something fierce. So I went from dr to dr and to a cardiologist and no one but no one said a thing about menopause.
I finally went to my gyne. He told me that I could not possibly be in menopause because my periods still came regularly. When i was alone with his old nurse I told her what I was experiencing. She just nodded sagely and said "yes, that's the way it begins". It still makes me laugh because all of those drs were wrong. I just needed an older woman.
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LiLi-RI- I agree you should be tested for Celiac. Even if the test is negative, you could have an intolerance. My mom has it and I had suffered those symptoms for years. I tested negative but went off gluten anyway and my symptoms went away. I have been gluten free for about 8 years now. Hope you figure it out.
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Wow Lili that sounds rotten!!Winter sorry about the biopsy. uff it doesn't seem to stop does it?
2 Tabbies I see you were diagnosed with ovarian cancer, did you have to have chemo? Its so hard not knowing. I wish I could send pic of my ovaries to that original MO but he is now back home practicing in Columbia. Just makes me mad every time they say something is in our head. This MO actually went on to tell me how ovulating felt and what I was feeling wasn't it. UMMMMM, I been ovulating longer than he's been alive, I believe I know what it feels like, UFFF!!
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That's funny! A young man telling a woman what ovulating feels like?
Actually I never felt it but certainly neither had he!
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Tim,
'I've been married forty-five years and wish I had a nice man in my life too'
very funny!
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have not posted here in awhile, but I try to keep up.
Tim, THAT was funny, got a big smile out of me.....I have had 2 Zometa infusions, my 3 rd will be in April. As far as I know, I have normal bone density. I am getting it to hopefully prevent bone mets.
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Hole, have you had jaw pain? Any pain? did you get the flu-like symptoms?
I didn't know they gave it if you don't have osteo. The evidence must be good for preventing recurrence.
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Yes, there was a article, stating findings from the San Antonio Breast Cancer Symposim, I think Jan. 31, 2014. You should be able to find it here. If I can find it, I will let you know.
My MO said it was not protocol, the jaw issue was not worth the risk. I did the research, I insisted on getting it, I was even willing to pay out of pocket. Insurance did cover it, the first 2 times.
No jaw pain. My bottom teeth have shifted. Chemo, my age, Zometa, I do not know. Frustrating, but I can live with it.
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Tim, I agree with Janet on the doctors vs nurses thing. Frankly, any doc who would say never listen to a nurse is an arrogant jerk. Doctors are not the Gods of All Knowledge. My sister-in-law, a nurse, was the only one who knew what the heck was going on with my brother when he went into withdrawal because the doctor had stopped his pain meds too abruptly after back surgery. I could cite other examples too. Sure there are nurses who don't know what they're talking about. But there are plenty who do. You're more likely to get holistic advice from a nurse than a doc. I'm not trying to put down docs. God bless them. They have a tough job. But any doc who dismisses nurses does them a grave injustice. The best docs I've had respected the nurses they worked with. I'll get off my soapbox now!
ndgrrl, I did not have chemo for my ovarian cancer. It was caught very early - stage 1a. The protocol at that stage is just surgery. I rather dodged the bullet on that one. I thought that maybe that was the allotted cancer diagnosis for my lifetime, and I was done with it. Hah! I hope your ovaries are free of cancer. When you said your doc went back to Columbia, I was thinking Columbia Medical Center not the country!
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Hole, does the jaw thing last through the two years of treatment? Or after?
It's very frightening, especially since I immediately had jaw pain. The dr said it had
nothing to do with necrosis and was just the regular pain that Zometa creates in muscles
and bones but I'm not so sure. It feels like a very powerful drug and I'm so tired of
pumping powerful drugs into my body!
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Tim, I was under the impression that if you were going to have a problem, it would manifest soon after the infusion, say in the first week.
Both times, I was achy, sore joints & tired, sort of like a 24 hour flu bug. And you are right, I do remember having slight jaw pain, bone pain. Nothing compared to chemo. I really did not consider the jaw risk. The odds are so slim, I figured how unlucky could a girl be?
My dentist said the IV Bisphosphonates are riskier than the pills. Still the risk, is extremely small. My risk of mets is 35-40%. That is scary. My nodes were fused & Cancer growing on the outside, much bigger than the tumor in my breast. It's all difficult, making these decisions.
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I've never been a risk taker, don't like to gamble. But this darn disease demands it of us.
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LiLi-RI- I also agree with the suggestion to test for Celiac. I was diagnosed in 2004 and have been gluten free ever since. There is a lot of really tasty gluten free food out there now and lots of restaurants have gluten free menus. The main advice I would give you is don't go gluten free until you have been tested - if you do it can cause you to have a false negative test. Feel free to send me a message if you have any questions. I also have a list of my favorite gluten free products that I compiled for a friend of mine so if you do have Celiac and want the list, let me know and I would be happy to send it to you. Good luck with everything!
Lisa
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A nurse practitioner is sort of halfway between a doctor and a nurse. I'm not sure if they can diagnose, but they can prescribe. I saw my oncologist during treatment, but after treatment they shunt you to the NPs. I have several friends who are nurses and I think the world of nurses. One of my friends told me "doctors treat the disease; nurses treat the patient". Although the nurses I see pretty much just take my vitals and update my prescriptions list. I think it's different if you're hospitalized (which I've never been), then they truly are your caretakers.
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I am getting increasingly anxious about this nodule/small lump on the recon mx scar that i am scheduled for biopsy on Fri under local. My PS was not really concerned about it but his advice was to get it out for 'peace of mind' it will be almost to the day of my original biopsy 3 years ago.
I hate this.
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Glad you are getting it out. I have a lump and one dr said to get it out but all of the other drs told me not to.
If it's on the scar, like mine, it could be dead tissue. At least that's what I'm hoping for. It's been 3 l/2 years for me too. Good luck! Do you have some xanax?
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