Calling all TNs
Comments
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Karen - Honey, I am so very sorry to hear your news of progression. There are just no words. I feel like Cocker, just mad, so mad. What the hell! And the Radiologist at Women's Center had the nerve to tell me that he hasn't seen any recurrences, they just don't happen, I swear this is what he said at my last mammogram. I was so confused when he said this, I couldn't believe it. He said I should not worry at all, since they don't come back, he doesn't see any recurrenes in the center where I go. This is all wrong, false, garbage.
Cocker, I have read somewhere why they find it so difficult to understand this disease because the cells multiply and then assume a totally new set of properties. While the scientists are analysing the first set of cells, the cells have multiplied and each cell has then taken on a totally new property. Of course, I am interpreting medical literature, but basically this is what it meant in layman's language.
GowiththeFlow - I had no node involvement, but yet they gave me radiation for a whole month, plus boosters.
Inspired - I like the way you dealt with your Oncologist. I would like to do the same, or that I need to do the same. However, I don't have any current issues, so I hardly see her these days, except every 5 months. Recently, I was having severe back pain issues which was similar to before diagnosis. After doing a blood test which came out all normal, she suggested, maybe you should see a psychiatrist or someone who you can talk to, maybe this is all in your mind. Such doctors should not be practicing. I want to complain to the head doctor who used to be my first Oncologist, about this comment and I will. These types of comments are a NO-NO-NO. The doctors used to say these types of comments to women in the 1980's & 90's, then an awareness came when doctors realized the disease called fibromayalgia, that it is not all in the mind, that women really have pain. In the medical community, the awareness was that this comment is extremely frustrating to women and should not be said. I don't know where my Oncologist was, when this awareness was all over the community. I am so mad at her, that I never want to see her again. Unfortunately, my best Onco. moved to Seattle, and left her with me. I don't have too much choice of Oncologists at this office, but the rest of the office staff are wonderful, especially the chemo nurses and the front office. No, it is not all in the mind, they don't know what brings on this disease, therefore, the cause is still unknown. Some forms of cure are there, and which I have taken, but my cause is still not known, so I have symptoms of something going on. She should concentrate on finding out the cause, rather than suggest see a psychiatrist.
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I had a lumpectomy, then many tests, then chemo, then 16 rads (one node +)
Follow ups are twice a year with mammo every year. He does no tumour markers or US, no MRI or CT or PET scans. I asked why and the answer was, it is not done unless indicated. I have no idea what indication there would be other than what shows on a normal bloodtest, mammo or physical pain or discomfort.
As it has been said many times, it depends on the country, the Oncologist and the hospital.
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Lovelyface: Oh my gosh, I totally get what you are saying. They imagine their patient as being a hypochondriac first, instead of first following a your belief, which is your belief that something is going on, and you want to find out what it might be. I don't like being dismissed either, and it's happened to me a bit upfront, when I kept asking so many questions, and my angst and worry was apparent. When I showed up to talk to my Onc, I also did it without notice. I did it on the day I got my final Neulasta shot, I usually see only the nurse for this. But when she walked up to give me my shot, I said "I need to see my Onc." So she said okay, and then he walked up to me, where I was sitting, and said hello, thinking I was going to ask him something, and I said "No, I need to see you in private" ... and then we went back into an exam room. I had him definitely engaged, and he listened very intently to me. Then I listened to him. We were very respectful and didn't interrupt each other, just listened and let each one say what they had to. I walked into the room feeling like I was going to cry and have a mental breakdown, but left the room knowing that he and I had resolved a communication barrier, gained a new level of understanding of each other and were going to be 'thick as thieves' after that. Things have been so wonderful after that. Even so, that at Thanksgiving, I gave him a card that said "when I count my blessings this Thanksgiving, I'm counting you twice." We still might not agree on all things, but we are able to understand what each of us is about, which leads to a better understanding of why I ask the things I ask and want certain things, and why he himself does certain things as well.
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Because I did chemo before my surgery, the effectiveness was measured by regular ultrasounds (and we got to watch it disappear!). I believe my MO told me that we would meet every 3 months in the beginning. Since I'm leaving town for 3 weeks right after my rads are done, I'm scheduled to meet BS and MO the week I return. Not sure about the RO yet, but I'm willing to bet I'll meet with her too.
I think I would want a scan after everything is done to be sure there is nothing there. I don't think that's unreasonable if you did chemo after surgery and have no data on how it worked.
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... adding to what Schatzi said ...
Oncologists will also take into account the individual risk assessment of the patient, along with other unique factors when determining a survivorship plan, and those factors may include status of genetic testing, family history, location of breast tumor, current labs, pathology report, etc.
If you aren't comfortabe with her survivorship plan, you might consider visiting another doctor for a 2nd opinion. Sometimes it's helpful to understand why they are or why they aren't recommending a particular protocol for your wife's particular case. By choosing to have a 2nd opinion, you will have the viewpoint of 2 experts in that field to compare. If you are concerned about upsetting the relationship you currently have with the current Oncologist, just remember this: they are very used to clients getting a 2nd, 3rd or even 4th opinion. They have personnel in the office that routinely fax information to other offices, being that of the 2nd opinion offices. Also, you could instead ask for a complete copy of your wife's file, and then have it on hand and hand deliver it to your 2nd opinion offices. That way they won't even have to request any information, and you could convey that you would like that visit to be kept confidential.
Also, you can get a free expert medical opinion online at AskAnExpert-JohnHopkinsBreastCenter. I've used their service as a guide before to obtain additional information.
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Heather,thanks for thinking of Dr. CAREY. I HAVE HAD MY onco for almost 10 years. I've had breast cancer three times and cervical cancer.
I''ve taken all the protocol drugs. The last on the list has neuropathy side effect. I'm not willing to cause myself more damage for perhaps an additional 2 1/2 months.
I just want to make this the best summer I can with my family, while I feel well.
It's important to know when to say when. I'm okay with this decision. I am the type of person who can accept things. Thanks for the love...0 -
Karen- God bless, I hate this for you and I hope you and your family have a fantastic summer!
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Karen - of all things, I wish you peace. I hope you have the most wonderful summer. And I hope you'll forgive me, but I'm going off to have a good cry for you.
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Obxk....you sound comfortable in your decision. You are a strong woman who has thought this through. You will have a magnificient summer with those handsome boys of yours. We love you. You are inspiring
Maggie0 -
OBXK: Ditto what Mags said. I am without words. But plenty of tears.
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OBXK: My heart breaks to read your words. <hug>
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Hey Gang,
I know I ask this before but did not see any answers so I am not sure if there were none or if I just don't see them........:) you know it happens.What are some things I might need to know to ask when meeting with the RO, as this route is totally new to me and I go this week?
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Morning hugs to all you ladies. Hope you have a great day.0 -
This thread fell off my "favorites" list. I wondered why you were all so quiet! Now I'll never catch up.
Karen - so sorry that Xeloda did not work for you. Wishing you and your family the best summer ever and all the strength and love you will need.
Phyllis0 -
Karen..enjoy this summer..I know you will...love you girl and I know whatever decision you make is the right one.
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Karen, May God bless you and give you peace. Although I am still in the "fighting with everything I have" stage, I know there will be a time when i too will say enough is enough. This is your decision and don't let anyone make you feel guilty, for unless they have been in your situation, they have NO idea of the toll it takes on us both physically and mentally.
I also wish the rest of you well. I'd like to know if anyone with a recurrence and te's had them replaced with permanent implants or removed or just left in place. My recurrence is in the skin and I'm still not sure what the plan is if my xeloda works. The te's are so hard they are very uncomfortable, but for now the bs and mo both said no surgery yet. I have a very difficult time sleeping, and I'd rather not go on any additional meds if I don't have to - don't want to make the liver work any harder than it has to.
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Karen, I love you and want to say that you are an exceptional lovely person from the little I know you from these posts. I have lots of tears and pain, after I read your post and I couldn't think any further after that. Praying that God be with you and give even more strength, as it already seems like you are a very strong person.
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I found this over at the TNBC Forum:
A crack in the triple-negative breast cancer’s armour: key enzyme discovered
"For the longest time triple-negative breast cancer has stood before medical professionals as the black knight, protecting its virulent self with a stubborn resistance to chemotherapy. But now, a research team of Canadians and Australians led by CRCHUM’s Dr. John Stagg has found a crack in that armour by identifying the enzyme that makes triple-negative breast cancer so resistant to chemo treatments...."
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Well, yesterday was my 1 year anniversary of "LIVING" with breast cancer. It's paradoxically been so fast, yet seems like ages ago. I want all you brave woman to know that you have all given me inspiration. I pray and hope for a long life, yet know if that is not what lies ahead, that I have a sisterhood that will let me keep my dignity and send me love.
Karen and Kathy, I'm sending you both my love and prayers that you enjoy your summer and find peace with your decisions. I can only hope to have as much grace as you two have shown.
On a lighter note, I'm taking 4 teeneage girls to a 1 Direction concert and weekend at Hershey Park. I must be nuts!!!!
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Hi:
I have not posted here yet but I am hoping to get feedback from from those here with a similar diagnosis and treatment plan to help me make a tough decision.
You can see all my stats below my signature line. I am doing taxotere and cytoxan chemo. On my 3rd treatment they ran it faster than the first 2 and I had some new side effects, including tinnitus. I was sent to an ENT who said my hearing loss was normal for my age (60) and prescribed a 5 day course of steroids which did nothing to improve the tinnitus.
I went today for treatment# 4 and also met with my MO. He suggested that I stop at 4 treatments based on my side effects particularly the tinnitus as he fears if I continue I may damage my hearing. When I started he told me I would do 4-6 treatments based on my response to the treatments. He also said that 4 is standard but he feels 6 is better.
So can those of you with similar stats and on this particular treatment tell me how many treatments you had? I am worried about stopping at 4 because chemo is our best defense. I will also being doing rads.
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Hi Goldie-
I did four rounds of a/c then a round of taxol then due to bad side effects moved to three rounds of taxotere so my treatment plan was different. Have you talked with your Onc. To let him kmow your concerns?0 -
Encyclias thanks for trying and posting the test but I've given up now and will believe it when I see it.
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Have been so busy living that I completely forgot that yesterday was the 3 year anniversary of my lumpectomy with clear margins. Time has flown. Other than developing lymphedema over the last 6 months all is well. If I could just shed the weight I gained over the winter I would be happy happy happy.....LOL
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Karen--You are my inspiration. Enjoy summer time with your family. (((((hug)))))
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Goldie1431: You mentioned that the side effects seems to occur once the dose was administered faster. Can they do the next 2 cycles at a slower rate of infusion? What does the rest of your pathology look like? Were there clean margins and no lymphatic invasion? Are you BRCA 1 or BRCA 2 +? Do you have a family history of bc? I think each Onc evaluates treatment based on individual risk assessment of each patient. If your Onc threw out there the possibility of 6 he must see something in your case that warrants 6, and if so, I would, if this was me, completely roll the dice on the hearinig loss (if it was very minimal), and get the final 2 cycles in. But then again, the treatments are cumulative, and so some side effects do get more pronounced the longer the treatment continues, with each new infusion the side effects can be stronger than the infusion before. It's difficult being a patient and having to make these decisions when we are not trained medical professionals, but all the time people are given choices by their Onc, and it really puts us in a difficult positioin, as we don't have the standard medical knowledge to understand all the data about something. But one thing is for certain, I like to error on the side of aggressiveness. My diagnosis, Stage 1 and I had 4 cycles of CT, and was not given a choice of 6. Actually I did say I wanted more cycles (originally) and was told by my Onc, that was not standard and would even be denied by insurance. However, if it was offered, if insurance would pay, I would have done 6, even with the risk of some additional side effects.
Maybe send a question online to John Hopkins Breast Center. They answer the questions free of charge, and you usually get an answer back super fast, sometimes within hours or 24 hours at the latest.
JohnHopkinsBreastCenter-AskanExpert
One more thing: Ask your Onc what the statistics are for survival rates for 6 vs 4 cyclesmfor your specific case, or, to phrase it differently, ask him how much those extra 2 cycles may reduce the recurrence risk?
Wishing you the best with your decision!
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Actually sweetpickel the entire conversation was with my MO. He is the one that thinks I should stop at 4. His concern is possible hearing loss. We did not discuss a different treatment plan though. He thinking is that since I have had some other issues with side effects that we are pushing our luck with proceeding with more. He says 4 treatments are the standard treatment. Ut that he feels 6 are better when they can be tolerated.
Thanks for your reply.0 -
Inspired byD,
I was BRCA tested and negative. Only breast cancer in the family is fraternal aunt. My margins were clean, and no lymph node involvement. The tumor grew one inch in the month between the first mammo and ultrasound, the core biopsy, the MRI and finally my surgery. The MRI taken 2 days prior to surgery did show invasion into the pectoral muscle, but no chest wall invasion.
I did have them drip slower yesterday and 2 nurses told me that dripping faster had nothing to do with my symptoms last time. I nicely held my frustration and anger in and asked them if they could just humor me and drip it slower please and they finally did.
It is my MO who thinks I should stop now and I am the one who wants to get all 6 in. I do have an ENT appointment the morning of the same day I have an afternoon appointment with my MO to discuss this treatments side effects and discuss this all further. I am going to ask the ENT to test my hearing again to see if there is any further hearing loss. If not I can use that as reason to continue on during my afternoon discussion with my MO.
Thanks for the link I will definitely use it. I appreciate your input to my question as well. Hope you have a great 4th of July!0 -
Goldie: Please post back and let us know how it goes for you. Fingers crossed that your hearing starts to improve. I will say, that a few years ago, my Mom got her concealed handgun permit and during the training course she blew out her ear drums, and never regained her hearing. She had ringing in the ears for a few weeks, and she lost her hearing. She wears hearing aids now. The docs all said it was normal hearing loss for her age, but we don't believe it, as nobody in our family tree has hearing problems and this happened when she was about 67 or so. I feel terrible that she has to go through this at her age. She is now 75, but she is otherwise extremly healthy, lively and feisty. So I know this hearing loss has been hard on her, it's slowed her down in some ways, and she can't enjoy TV, but uses the closed caption. It breaks my heart to see her have to change so much due to the hearing loss, but the docs said it was normal.
Make sure you have all the hearing tests done to determine if this is due to your age or the treatment. I would think it was due to the treatment, as I read just the other day that our treatment had that as a possible side effect. And if it's due to treatment, is there a chance that the damage is done and wil not change over the next two final treatments?
Please let us know what you find out, what John Hopkins has to say, and the results of your test. Fingers crossed you get good news!
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Goldie, I developed tinnitus about five years ago while still in good health; I am 64 now. My mother had it also in her older years. My hearing is still sharp, but the "crickets chirping" in the background is distracting. Sometimes they are almost silent, other times quite noticeable. I did some research back then and found out that the sounds are actually being created in the brain rather than in the ears. It took me a while to even realize it was happening because I live by a lake and natural wetlands area and the "crickets chirping" sounded pretty natural -- until they were still around in the middle of the winter.
But there certainly is a possibility that yours is linked to your cancer treatment. They don't know what actually causes tinnitus and that it may have several different triggers to set it off.
I hope all works out well and that it will go away after treatment and your hearing will be restored to normal.
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First I'd like to say that I'm saddened by some of what I'm reading, and sending hugs and prayers to all that need them.
Goldie - I was on a treatment plan of 4 TC (cytoxan,taxotere), even though my husband would tellyou I act like I'm healthy and do most of what I did before, my side effects have landed me into the hospital, doctor and lastly (after 3rd infusion) a major allergic reaction that my coworker described as a violent attack on my body. My MO has given me two choices, one is to stop here at 3 and the other was to add a round of AC. She said the risks of side effects at 6 is to great and 4 is standard for me. She said a lot of people stop at some point and if you get 75 to 80 percent of treatments you are in "good shape" - whatever that means. We decided that since I have a small chance of aggressiveness from triple negative that this is the point to fight it and we are going with my final chemo of AC. So if you already had 4, you are ahead of the game from where I am. Lets pray we are all on the right track.
Speaking of AC, I know there are many forums, I've read its called the red devil or something, can anyone give me a quick rundown of side effects, for some reason I feel very afraid of how I will feel on AC. Up till now I've been driving myself to and from TC treatments an hour away. My husband stays with me thru treatment but he works nights in NYC and I meet him at work and we drive over together. Will I still be able to do that. I only have to do one.
I appreciate this forum more than anyone can know. Even if I dont comment I am always reading and feel better to be here knowing we are a sisterhood and we and only we truly understand this battle.
Have a great day everyone.
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