If you are not Stage IV but have questions, you may post here
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I have a question for the group, please. I am five years out from stage 1, BRCA1+, no node IDC. I had mastectomy and hysterectomy and 8 rounds of AC/T. My left abdomen is enlarged. It is visibly noticeable. I have been watching it for a couple of months (I know, I know) but did not see my oncologist because I have absolutely no pain. The oncologist saw the enlargement, felt it and then said we needed to CAT scan it. He walked out of the office and push a rush on a CAT scan. They are working me in tomorrow. I am trying to tamp down the anxiety. Anyone ever heard of this? Thank you for sharing any insight you may have.
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Hi Jilly, it is very probably that the nausea is being caused by your addition of the pomegranate and flax seed that you have added. Try stopping that and see if it makes any difference and if not then definitely contact your doc.
Miller, it is possible that you have developed a large cyst but it's good that your doc is pushing forward your CT as a large growth is most concerning. Usually if, as women with BC, we find something new the rule of thumb is to watch for no more than two or three weeks before getting it checked out.
Good luck to both of you girls and prayers that results are good. Please let us know how you get on.
Love n hugs. Chrissy
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Through another forum, I am aware of a New Zealand young mother, with metastatic triple negative, whose cancer has spread to her bones. Two young children, and no advice from any medical people. If there is someone who can give this young mom some help or comfort, I know she and her family would benefit.
http://www.stuff.co.nz/taranaki-daily-news/68255221/Mother-of-three-fights-to-stay-alive
This comes through a friend on a list serv of www.participatorymedicine.org, a group which fights for patient rights, open communication and collaboration between patients and providers.
Many thanks for any help you might provide.
Peggyznd
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Peggy, that's such a sad situation. When she says "triple negative ductal carcinoma," she sounds like she thinks it's something extremely rare (which it isn't), and that leads me to believe her medical team probably doesn't have a lot of experience with TNBC. I would hope and pray that she can get a long-distance consultation at one of the top US medical centers, such as MD Anderson (Houston) or UCLA (Los Angeles) -- both of which are known for their TNBC research and better than average outcomes. While her situation does sound dire, she might clearly benefit from a second opinion from a medical team that specializes in TNBC.
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Thanks, Chrissy...you were right!
I stopped all supplements so not sure which one was the culprit. Funny how it waited 2 weeks to catch up with me.
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Miller, please let us know how you are doing, and i am keeping you on my mind.
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Jilly by adding one of your supplements and then waiting a couple of weeks before adding another you will soon work out which one doesn't agree with you. When adding new things, it's always a good idea to do it one at a time. That way if it doesn't agree with you, you know straight away which is the culprit.
Love n hugs. Chrissy
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hello ladies, i haven't been here for a while. Im trying to move on with my life but ach n pain always scare me. The past 3 months Everytime i reached or picked up something i always feel like pitching nerve on my cervical spine on my right. Sometime i feel a little itchy sensation around that spot. It bothers me too when i drive. It doesn't hurt but it's annoying. So a week a go, I sat on my electric massage chair....around that spot. I think i make it worst, it starting to hurt me more than before when i move n pick up certain things certain ways. When i pressed on one of my cervical spine i can feel that one spot n i can feel that sensation radiate to my shoulder. It doesn't keep me a wake at night. I can feel the sensation if i moved my neck but it doesn't keep me a wake or bothers me at night. The pain during the day is not bad, it not constant only when i move or reach for things...or when i move certain ways. I know i repeat myself over again n again. Please forgive me. Thank you ladies!
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Well...recently I feel it when i am active with my right arm but just my right side only. I had issued with my stiff fingers like a year ago n my MO said i have minor arthritis..but that was a year ago.
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soriya, what you're describing sounds like it might be a pinched nerve. OTOH, because you're starting to have ask if it might be related to your bc, I think I would mention it to your onc and see if he/she feels some type of scan might be appropriate -- if only to ease your mind.
Maybe three years ago I had a very painful spot on my hip. At the time I was going to the gym a lot, and the one-time coupon deal massage therapist I went to for the pain (in a chiro's office -- so I assumed she was good) felt strongly that it was related to my gym routine, so she worked extremely hard on that one spot, and I ended up in much worse pain for several weeks afterwards. Fast forward a couple of years, and I was dx'd w/bone mets in that hip. Of course there's no way of telling if the pain I had earlier was even related, and after the additional pain from the massage went way, it didn't bother me and had nothing to do with how my bone mets eventually manifested. But your experience with the electric massage chair made me think of it and want to suggest to you that it's better to get it properly checked out if it continues to bother you. NOT that I think it's mets, but just that any pain that lingers as long as yours has needs an answer so that you can get the correct therapy for whatever it is and relief from the pain. (((Hugs))) Deanna
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Hi Soriya, it does indeed sound more like a pinched nerve and it may be due to arthritis but, like all things after being dx with BC, it's a good idea to mention it to your doc so I can be monitored just to make sure it's nothing other than arthritis.
Hope you can get some relief soon from that nuisance pain.
Love n hugs. Chrissy
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I was here a few weeks ago with significant knee and foot pain. My MO switched me off exemesthane and pit me on femara. He also sent me off to a rheumatologist who did not find anything. He did give me etodolac, lidocaine patches and Voltaren gel. For a blissful week I was without pain.
Now it is back with a vengeance. Bone pain in my legs, lower back pain and rib pain. I went to bed at 11pm and have been up since 3am in pain. It is now 5:40am I also have neck pain.
I saw my MO April 9th. While my knees are not as bad. My legs and back are keeping me up.
When my pain started in March. The orthopedic doctor sent me for an X-ray of my knees and MRI of right knee. Nothing remarkable just some osteoarthritis.
I hate being worried, I hate being scared. When do I get my life back? Do I call my MO?. I feel like there is always something.
Thoughts? Thank you for your time.
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School...so sorry you're still having issues! Again, you need to ask your MO if you can take a 2 week drug holiday to see if it's causing your exacerbation. Sounds like AI's are not your friend.
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Thank you ladies, my pain is not bad n it has decrease. That pinching nerve spot on my cervical is still there. My follow up appt with my MO is next week i will mention this to him.
School, I know when will we get our lives back. As for me there is always something pop up to scare me. I hate this. Have a great Mothers weekend ladies!
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I worry about a stage 4 diagnosis since I have negative receptors. I am currently going through chemo, which is definitely not fun. My question is are the side effects from long term treatment as bad as the initial chemo treatment? Once a stage 4 diagnosis is made, does life become going from one side effect to another and never feeling good again? I know it is much more difficult for those who are stage 4. So I guess I am looking for insight on how you cope with all the ongoing treatments and effects from the treatments
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From my reading here, when you are still at a "curable" stage, (0 through lllc,) they throw the big guns at you, to try to knock it out completely. When you are at stage 4, they start with the more gentle treatments first, most of the time, such as the anti-hormonals. Moving on to the least awful chemos first. Because they try to give you the longest best quality of life first, and only move on to more harsher regimes when the ones with the least side effects or harms have failed for you. You have a long way to go, hopefully!
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Need your input, please. I just had a bone scan and a tiny, tiny area showed up on my left upper shoulder. Results indicate that it looks like trauma. I was rear ended hard while in a taxi a few months back. Being stage 3 I am concerned about bone mets...had a CT scan too but nothing showed on that. What else could show on bone scans? Inflammation?
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Hi Peacestrength, arthritis will also show on bone scan and it is sometimes hard to tell the difference. Trauma of any sort will show up as the damage to the bone will absorbe more of the radio active isotope.
Keeping my fingers crossed that it is just trauma damage for you being rear ended.
Love n hugs. Chrissy
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Yes, inflammation and arthritis both show. Give it the 2 week rule: if it bothers you still after two weeks, then call your doctor. Does ibuprofen help?
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Thanks Tomboy and Chrissy. Tomboy, I don't have pain. I see my MO soon to discuss
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So, besides for me my mom also had BC, she was diagnosed 4 years ago. My mom always get bad colds and coughs for weeks on end, she's had the same cough now for about 7 weeks, it has gotten a bit better but her voice is still hoarse. She told her MO and he sent her for a chest x-ray, and based on that he called her back in. The radiologist said there is a spot that may be an infection that should be watched. Next step is a CT scan. Obviously the mind goes right away to lung cancer but there are other, less serious things it could be, right?
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Stephanie, the spot that the doc is watching could well be just infection but having been dx with BC her doc is being super careful. If your Mom suffers from reflux, that can cause the hoarse voice so yes, there are other things that can cause her problems. Please don't let your mind go to the dark side until or unless it really has to.
Let us know how she gets on.
Love n hugs. Chrissy
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Stephanie, adding to what Chrissy has already said, it's very common to find "spots" on the lungs, and some of the most common causes are artifacts from previous illnesses, such as pneumonia or bronchitis, which can leave scars. X-rays aren't nearly as sensitive as a CT will be, so it's good she's getting one. The fact that her cough is getting better -- not worse -- sounds hopeful. Fungus infections (e.g. desert fever) have also been mistaken for lung cancer or lung mets. Hugs & prayers that the spot turns out to be something non-concerning. Deanna
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Hi all
I am not stage 4 , but my husband was stage 4 ( colo rectal) in 2009, did very very well w/ surgery and losts of tx and is now a stage 4 recurrence.2014
I have Qs , mostly about narcotics and wonder if a PM would be preferred (?)
This is the essence .... he was in TERRIBLE pain ( app 1 yr ago) Local onc. dr. thought he had sciatica ( grrr) and refused MRI. Finally went to Boston Drs. who DX immed. It was in his pelvis pressing on nerve to leg and foot.
After Folfox chemo, he got a HUGE blood clot the ' the bad leg" and that made that pain much worse.
After a yr. he seems more stable and in less pain generally with less swelling etc , but is accustomed to 3 morphines a day and 12 -14 oxys, plus gabapentin. He sleeps a lot.
I am thinking he would have a MUCH better QOL without so many narcs and also wondering if the pain level may have gone down with some oif the issue having improved, but he is also dependent on it. Naturally , he is resistant to trying to wean some and possibly add more gaba ( only takes 2 of those 3x a day) and has asked me not to consult DR.
Suggestions ?
Many thanks and Blessings to all.
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Gosh, purple, my heart goes out to you and your DH. I'm wondering, could you somehow let his onc know (in total confidence) about your concerns (e.g. email him/her to say, just want them to be aware that your hubby takes so much pain med, he's sleeping "x" hours a day), and let them take it from there? Perhaps having that information will lead them to ask him questions that they might not otherwise, which could in turn lead to calling in a pain specialist (if it's a major medical center), or referring him to one if it isn't? If they can solicit some of those details directly from him (based on what you've told them in private), then perhaps they can bring up re-evaluating his pain med regimen??? Just a thought based on something I recently heard on XM Doctor Radio... (((Hugs))) Deanna
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Thank you for the feedback girls. My mom saw her MO today, he said for now they'll treat it as an infection with a week of antibiotics and next week she will have a CT scan to rule anything more serious. Her cough had gotten better but it has started acting up again so I don't know what to think really. We have a few parties this weekend so going to enjoy the distractions and hope for reassuring news next week.
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Stephanie, keeping my fingers crossed that her CT shows just healing infection. Thanks for letting us know.
Love n hugs. Chrissy
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Thanks for your reply, Deanna.
I appreciate it.
Sure wish this doc had pt. portal; emails, but they avoid it ! I have thooght of trying to call him in confidence, but I am a little concerned I might come off as saying my husband is faking needing so much or ... and have it put in his records or.......
At one time, he did need all this.
Fortunatey, some issues/symptoms have improved and he truly does not , but is dependent upon it. Sure dont want to tell a DR that :>(
Was just wondering if any of the ladies here may have had similar experiences with narcotics and how they dealt wtih it.
Take Care!
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Well, you could really try and talk with him about your concerns, I guess you probably have a little, but I would be very wary of telling the docs. In my experience, then they may become overly concerned about it, and deny them andy more. It happened to a st 4 lung ca friend of mine. She was forced to go to another doctor altogether, outside of insurance. Oddly enough, she stopped a year later, because she said, she" wanted to see how she really felt". And so she stopped. After she passed, I found a cache of narcotics, which she had stockpiled, I guess in case they cut her off again. The problem with narcotics, is that it takes a greater dose to achieve the desired effect, lessening of pain, over time. Does he go to the pain management doc? Can you go with him? Maybe if you told him of your concerns, he could tell them you were worried about him sleeping too much, but he would still be the one "in control" of letting them know about this.
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Sorry for posting, and intruding on your privacy, but is there a thread for stage 3 concerns about going to stage 4? i ask, because I am ILC, dxed Feb 2 2015 & here we are end of May and I've gone from "it's nothing to stage 3"...so, since every time they do a test, it gets worse and worse, I'm expecting to move into your club soon (sorry...I know you have too many members!)....so my question is....how long do most stay stage 3 before jumping to 4?
Okay, just edited this for the last time I hope - trying so hard to not hurt anyone. ...got the pillows up and ready for the well deserved bashing! And I'm tired...always...sorry....I'm so close to deleting this because to topic heading says we are not welcome. ....
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