Calling all TNs
Comments
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Painting - I did a second opinion at MGH, and had my surgeries there with Dr. Michelle Gadd. My oncologist is not at MGH. It was a bit of a long day - you will see a Medical Oncologist, a Breast Surgeon, and a Radiation Oncologist all in one day, then they meet and give you their plan of action. In my case, it wasn't any different than my MO. I would highly recommend Dr. Gadd for surgery, however. She isn't touchy feely, but she is an incredible surgeon, and if you need nodes removed, she is one of the best. I credit my great surgical outcomes to her skills.
Good luck! I'm glad you "only" have swelling. It sucks though.0 -
My pet scan was initially denied also, but somehow the docs got it approved. This was when I was first diagnosed, i wonder if I will have the same issue when my doc wants to scan again. Not sure when that will be, as I am doing neoadjuvent. I did have a ct scan to see if the chemo was working after 3 treatments, and it is!
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my grandmothers cure for boils - make a think paste of white bread and boiling water, apply straight away in material like a hankerchief. Leave overnight. Repeat again in the morning. The heat draws the boil out. It works.
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To anyone being denied scans...Try as hard as you can to get docs involved and fighting for you. Also, if one doc doesn't get approved, try your family doc or whoever referred you to cancer docs. Don't give up. My cancer(and recurrence) would not have been found were it not for MRI's, so please stick up for yourself and keep at it. Don't take "No" for an answer. You deserve better. If you don't advocate for yourself, nobody else will.
I am lucky to have docs who listen and take time.Sometimes, you just have to be adamant.
Best wishes to all of you brave women on this board.
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I pop in from time to time...and I learn something every time. I also had a boil, first in my life and it was right at my butt crack! In the shower, it 'drained' and that was that, with a little antibiotic cream. Nice to know it wasn't me and just another SE.
I'm 9 months out from last chemo and the foot neuropathy is worse. I was ok'd to go find a job, but now back to bed rest. ouch ouch ouch. I was also feeling worse and worse instead of better and better. Saw 3-4 specialists including my onc that said, 'oh, well, hang in there'. grrrr. So saw my pcp and she finally kinda reluctantly said its not on most dr's radar but sounds like I have adrenal fatigue. MBJ and I discussed at length months ago and its a real malady that many post-chemo people get. I ordered the meds, (special combo of vits and minerals and electrolytes) & (essence of adrenal glands of animals minus the hormones). As I complained on the gripe,complain board, I survived cancer to feel this bad? She also recommended B-12 shots, and gave me one while I was there. I felt a little more energetic, but feel and legs still hurt. Remember I've had 6 months of blood tests, xrays, mri's, evaulations and meds; bedrest, activity, low sugar diets, meditation and nothing has worked. I only say this for some down the road that might end up like me, still sick! If this doesn't work, its the end of the road for me. Chemo was just freaking poison to me. Hateful Cancer!!!
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good morning ladies, hope your all having a great friday. so i went to the doc yesterday and got on a course of anitbiotics for the boil. hopefully i start seeing it shrink soon, dont ya just love this arrrggggg lol.
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tnbcRuth: I have a combo of adrenal fatigue & thyroid issues but I have had a bit of it all my life. It got worse after a car accident 5 years ago and after BC, surgeries and chemo, forget it. Have you checked out my new thread "low body temperature anyone?" yet? I have horrible neoropathy in both hands and plantar fasciitis in my right foot. It seems to disappear when I can get my body temp up to 98.6 and I am trying to get it up there permanently. You are probably running at a very low body temp if you have adrenal fatigue.
This is the most informative website on adrenal fatigue: www.DrLam.com.
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Hi Everyone, hope you are all getting out and enjoying the sunshine when you can. Seems to lift my spirits to walk in the yard, pull a few weeds, or just sit on the deck and look and listen. God's beauty is everywhere...
nbjhwgirl- how aweful to have to hear you have 2 breast cancers at once. hard enough to deal with one!! I hope you find someone to relate to on that, susanhf sounds similar. Hugs to you.
BernieEllen- so glad to hear from you. Sorry to hear your chemo was postponed, but the port will make your chemo life so much easier. I have had 3 ports since first diagnosis in 2002, and I wouldn't want to be without mine. Hope you are feeling more grounded than you were. Hang in there.
painting- I have never seen art like that-- beautiful. Sure hope you get your swelling under control.
Suze35- If I remember, you are having radiation in the mediastinum? or just supraclavicle? I finished 35 rads to my mediastinum in April, with almost no SEs. My RO was amazed. No burns, no coughing, very little sore throat. My nat. path doc had me swallow a packet (or teas.) of honey, 15 mins before and 15 min after rad. and 6 hrs later. I also had some tablets called Risonate (?), to chew 20 min before I ate a meal.. ck with your doc.hope it helps. We have very similar scenario going on. ps love your car!!
Kymn- so sorry to hear of your boil. I didn't have any with treatment, but I had an 8 x 3 in one on that same place when I was around 16. Hope things are resolved soon. Now we can say "one more to go"? Think I jumped the gun on you last time, sorry. Feel better.
Titan- you are a good advocate. You encourage, sympathize, and seem to say what we are all thinking. I know all to well the anxiousness we can feel when we think something isn't quite right. I am having so many doubts right now about my treatment plan. I was switched to a new doc at my clinic last fall, and my new MO just doesn't give me all the info I would like. She has me on Xeloda for six weeks...let me back up. When chemo stopped working in Jan. she sent me to RO. He said he would like to have me do rads and chemo for more effect. MO said no, she insisted I take a break from chemo, and so I just had rads. Well, rads worked beautifully, but scans after showed new nodes in the supraclavicle and one on each side of my thyroid, and a new suspicious spot on my liver (sorry if I have told this already). So much for my "holiday" from the chemo. So now I am on the Xeloda one week on one week off for six weeks then CT of neck, MRI of liver and brain scan. I am so worried this chemo is not being effective, and things are getting out of control while we are using Xeloda, (Xeloda converts to 5-FU in the body, and I had 5-FU (FEC in 2002), why would she think this would have an effect now?) Has anyone been down THIS road? I start week 5 (on) on Sunday, then last week off, and we are on vacation on the last week also. How will I ever relax with scans days away?
Well, I think I am caught up, yes Kymn chemo brain is everywhere. I have a hard time keeping you all straight, too! Hugs and prayers to everyone!!
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Rella: I hope the Xeloda works for you. My friend who is Stage 4 is having great success with it. Sorry I don't have much else to offer--You have been battling this for a long time and I hope your scans come back clean. Hugs!
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MBJ- I have not had a normal body temp in YEARS. Could this be the source of my aches and pains? I am very interested in learning more about it, ane adrenal fatigue.
Luah- I think it was you that talked about St. Lucia.... what can you tell me? Never been on a vacation other than camping, and one trip to Niagra Falls about ten years ago. Going to be 50 this year and we are trying to plan a cold weather trip to somewhere warm this fall or winter, and don't have a clue where to start.
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Yes,I did internet search but not the new thread. Will go there now. I'm doing the things mentioned because I was 96.0 at the dr. and can barely reach 98. You are right on target girlfriend! I have the PF in the front pad of my foot at the next-to-last toe area..not in heel. Yeah, my pcp said my system may be shot and I tend to agree. She said blood work (extensive) says stuff is in my bloodstream but I might not be processing it. I feel so s**tty all, just allllll the time. I left my party an hour early cuz I was too tired to dance. 8:30 pm. urgh Are things getting any better with you? I got a massage out of desperation...felt like someone had tried to tear off my arms and legs...for 2 days I could not get still from the pain. It did help some.
And as just a ps, when I was in the hospital, my blood count went to .1, the lowest the drs had ever seen and worse was less than 1/2 the neutrophils(?) were working. So not only did I have to 'recover' from that, I had 3 more chemo treatments, removal of my breasts, TE and then implants. alone. My first response to BC was to let nature follow its natural course. I wish I would have. This is Nuts!!! ok, enough whining for one day. Off to walk my foster dog in the 99* heat~
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tnbcRuth: My low temperature site has a link and a blog and I am in the middle of trying to "reset" my body temp. After doing a ton of research on many, many things I realize that low body temp pretty much explains most of the problems I have had with my health all of my life. It's pretty amazing that just getting to 98.6 knocks out all of my pain! I have spent almost the last 2 years trying to rebuild my adrenals--still, my body temp wouldn't come up. I don't think with TNBC I would have let nature take it's course as I am sure I would be dead. Don't get discouraged.
Rella: Most of the time I feel like I am a 90 yo woman! It's a known fact that low body temperature can make you ache. Come check out the thread and see if it makes any sense to you. It's not a path for everyone, but I think for me it's the road back to health.
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MBJ I can't find your thread, I am still a newbie somewhat, or maybe just a DA (dumb a**). i came up with that at work (oh, how I miss work), and it has stuck with me. lol
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thanks rella40, i doing good at the minute
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Has anyone had clavicle added to their rads treatment? I saw RO yesterday and was distressed so say the least. First thing he said was "You're young (50), you're triple negative. That's bad. Real bad." Didn't hear much else he said as I pretty much cried through the rest of the consult. He did say, "You're probably cured already, but we want to be sure." Thank god DH was along. He was not too impressed either, but treatment seems to be standard of care, I guess. Just surpriseda bout recommendation for extending the field to the clavicle area, as I am stage 1, 0/3 nodes, excellent clear margins. BUT...triple negative. This has not been mentioned before and I am concerned about adding another area, increasing the SE's (although he says it does not increase the risk of lymphodema). He is the only RO within 50 miles and to seek a 2nd opinion is a concern since I am 3 weeks PFC and need to get going with treatment. Am trying to be logical and think that even though he is a bit of a jerk, what he is telling me is probably not unreasonable. Any of you who were early stage TN with extended field added to rad therapy?
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I didn't have any node involvement and after an MX didn't need rads. If you had only a lumpectomy with clear margins then radiation is standard of care and I would trust the radiologist. If you had an MX, I would get a 2nd or 3rd opinion. BTW: I really hate doomsday dr's and that alone would be enough for me to change dr's! You need someone who is positive and caring and proactive not someone who scares the sh*t out of you! I fired my first dr. for that very reason-every time I saw him I left crying and upset for weeks. You don't need this additional stress during treatment. Once I changed dr's it was as if a weight was lifted off of my shoulders. Hugs!
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Husker - I am having supra field, but I have positive nodes there.
He may be reacting to a study that suggests decreased chance of mets when those nodes are radiated. I saw the article recently here on BCO. I had full node removal with two surgeries and 4 fields radiated...so far, just mild LE controlled with massage. My cancer was much more advanced however.
I would talk about it with your MO, possibly get a second opinion, maybe read the article here at BCO. You should be comfortable with your treatment!0 -
http://www.breastcancer.org/treatment/radiation/new_research/20110606.jsp
Here's that study!
Sorry to post and run, will catch up I promise!0 -
Hi guys - anyone know of a chart that shows recurrence rate vs years out for TNs? I know after 3 years the rate is supposed to drop - but does that mean in the first 3 years it increases until 3, and then evenly decreases until... 5? I'd love a graph, actually, since I am a visual person.
I keep waiting to get to the 3 year mark (i'm at 2 1/2 years) but if after three years the decrease rate holds pretty steady then it's not much to look forward to...
Thanks!
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I would love a graph too, that would be great
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Suze, thanks for the link. Had just 15 minutes ago found a reference to same study. Am printing it now to review. Am calling MO and/or nurse navigator this afternoon as well.
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minxie: That's a good question. I have heard about the 3 year thing, and I wonder at what date do we start counting towards the 3 years?
Huskerkkc: I am sorry about how your RO acted. None of my doctors talked that way about TN. I would think with early stage like you are, you would not need the extended fields.
Suze35: Thanks for posting that link.
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I imagine we would count from the day the cancer is no longer in our bodies. My diagnosis was Sept. 2009 but my MX was March 2010
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UPDATE: I called the nurse navigator (she sat in on the appt as well) and told her how unhappy I was with the appt and his comments. She apologized all over the place and said she hated that he presented things in such a negative fashion. She said, "No one should have to give up hope" and that she had shared her concerns w/her manager previously (not sure if that was about me or other patients; I'm guessing others, though). She even suggested a second opinion. My husband said DO IT, so I have postponed the start of my rads (supposed to be next Wed) and have asked her to schedule an appt with either of the 2 oncs that are within 70 miles of me. I prefer the one that is an hour away but if onc has a strong opinion on either one I will defer to that.
I am not opposed to the rads at all; it is the standard of care. But the doomsday approach and lack of tact (and confirmed by the nurse navigator) have me concerned. I may end up with this RO anyway, but at least I will know my options and I will feel like I have had some say in my care. Nurse navigator will discuss with my MO on Monday. As my DD1 (25 yr old lawyer and much more logical than I, and can see things w/o the emotion attached-plus wasn't in the room so is more objective as well) pointed out, "It may be more convenient to stay with this guy, even if he is offering you standard of care. But if you are so stressed and upset every time you go, even if only once a week, THAT is going to affect your health and outcome as well. You do have a choice. Just get a second opinion so you know you're making the right one for you." Wow. How did I raise such a smart kid?!
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I agree!!! Good for you to get another opinion eve though it is less convenient. My team was amazing but I had to work hard to find them. Good luck!
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Husker - I'm glad you are getting a second opinion. My RO is actually the most optimistic of all my doctors, though my MO is good too. It is very important I think. Keep us posted!
Re: stats - I have heard the first 12-24 months is the highest risk, with over 50% of recurrences in the first 12 months. After 24 months the risk starts to drop, and after 36 months it is a steep drop, down to at or below ER+. At 5 years that risk is supposed to drop back to general population, not unheard of, but rare.
Now I need to find the data to back that up lol.0 -
MBJ: That sounds right, to start counting from date of surgery. So I am around 6 months out? I guess that's a start.
Husker: Great that you are getting a second opinion.
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Husker..I had a lumpectomy w/rads but it was whole breast radiation only.
Sometimes though, I kind of wish they would have radiated my clavicle area and under the armpit..even though my nodes were clear also.
I'm just stating what my thoughts were (and still are)..
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minxie...I have enlarged the chart in this study..it shows recurrence rate by timeline... The study is 2007 though. http://clincancerres.aacrjournals.org/content/13/15/4429.full0
