CALLING ALL STAGE I SISTERS
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Way to go with good test results Sheila - I am glad you are feeling better about finishing Femara.
Jo - I wish I had had the chance to form a life long relationship with my onc and feel that he was going to be on top of things. I only saw my onc once - he wasn't interested in a life long relationship - prescribed Femara as 'insurance', said I would be fine and that he didn't expect he would see me again but gave me his card and said 'call me if you have any questions'. The only follow up I get is my GP who writes the script for the Femara - no BC specific blood or any other kind of test done - and he will eventually say one day that my five years is up and aren't I lucky I have done so well! No comfort from ongoing checking here unless you are a 'serious' case it seems
I am quite worried about going off the Femara because then it will be up to me to monitor my BC - a wee bit scary.Val - travel safe. Enjoy the grandbabies.
Annette - sorry to hear you had such an extreme reaction to one little pill but I know what you are talking about when docs don't believe you have had a reaction to a drug. I was put on a very common blood pressure pill a few years back and instantly developed terrible heartburn - had to sleep sitting up because it was too painful to lie down - I had never had it before even when I was overdue with twins! I told the doc and he said I was drinking too much coffee and eating too much citrus fruit - um, had been doing the same for years previous and it had never been a problem, but ok, so I cut them out and still the indigestion persisted. He then gave me another drug, Losec, to fix it and it didn't make any difference so in desperation I talked to the pharmacist and he said that 99.9% of people tolerated this drug extremely well and he had never had anyone complain about it so he thought it would be something else too. I finally decided to take myself off the drug and within 2 days the symptoms had completely gone. I learned the lesson and now I listen to my body and my intuition. Femara makes my life very uncomfortable and painful in many ways but I keep taking it because I am able to manage the SEs and I feel permanent damage is not being done and it gives me a 3% absolute survival benefit and I need every % I can get - lol. Glad to hear the instant SE are lessening and hoping they will go completely real soon.
Hi Joni, BarbaraA, Granny, Meece, 3jays, Deborye, Raj and everyone one else who's reading this!
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raeinnz -That's sad to think your onc doesn't really care if you exist or not. I'm sorry, that is their job, what they went to medical school for. My onc told me that as long as I am in this area, we would be seeing each other on a regular basis. My DH has had no recurrences for several years and he is still seen every 6 months for labs. If we every leave this area, my onc will make arrangements for us to be seen by someone in our new area.
I am being seen every 4 months for labs and Tamox followup. He told me he would also schedule my mammos and any other tests he felt I needed. I am due to see my GYN in June and if he does the scheduling, my onc does not mind - I am to let him know so he can get the results.
I would be really scared once I was off my pill if I did not have any kind of BC follow up. Can you go to another onc that is a lot more caring? I hope so.
Have a Great Day
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Many of us weren't able to be given any pill after intial chemo and rads, and have relied on the follow up visits since. I feel that I will freak when they cut me completely loose. My NP (who I am not fond of) told me that I am back in the 1 in 8 women group. She has such a bedside manner!
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ok- i don't know if i am just crazy or not...my arms are very flabby...more so since the BMX...so now i am worried it is lymphedema...they don't hurt-still tingle from the lymph nodes taken out but actually have more sensation in them a littl ebit each week...but man I looked at them last night this morning and they look like i have flaps under my arms...i am gonna call BS....sheesh...how can you telli fyou have it?
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Flabby is not lymphedema. However, it might be a good excuse if anyone ever commented on mine. My Dr. told me it is aging. My arm is still numb fron the lymph node removal, but I just don't pay attention to it anymore, other than shaving and putting on deodorant. You might also be seeing the flaps because you are not using your arms as much since surgery.
The following are SOME of the signs of lymphedema:
* Swelling in the arms, hands, fingers, shoulders, chest, or legs. The swelling may occur for the first time after a traumatic event (such as bruises, cuts, sunburn, and sports injuries), after an infection in the part of the body that was treated for cancer, or after an airplane trip lasting more than three hours.
* A "full" or heavy sensation in the arms or legs.
* Skin tightness.
* Decreased flexibility in the hand, wrist, or ankle.
* Difficulty fitting into clothing in one specific area.
* Tight-fitting bracelet, watch, or ring that wasn't tight before.0 -
PS: Annettek, you are not crazy.
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Annettek, I am 3 weeks post BMX with node removal. My upper arm, underarm and shoulder blade is still numb, with some itchiness and tingling. There is no size difference from the other arm, so I know it is not lymphdema. My underarms are getting flabby from not excercising for over two months - this seems to be the first area that goes once excercise is stopped. Now I feel like one of those teachers that write on a chalk board with their underarms flapping away! Better than cancer, though!
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ROFLMAO I LOVE YOU ALL...I just laughed out loud at the responses..Meece and Slinky you captured it perfectly- I am really conscious of not using my arms much per the PS instructions and now I feel like that teacher up at the board..And Meese..when you said you just might use it as the reason OH MY GOD hahahaha that earned a big belly laugh...THANK YOU...now I am taking my wings and flapping away to lunch....
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Raj..Thanks for your kind words. How are you.
Rae....I know it from last time that you don't live near the EQ area.
I'm sorry for all the people that they lost their lives and injured.
Jo....How are you feeling. And yes you keep counting the days for your vacation.
Val...Have wonderful time with your family.
Meece....I also have flabby arms.
Annette..I'm not laughing at you but your avatar is hysterically funny because it's really representing your feelings right now.
Hi slinky.
(((HUGS))) and more hugs to all of you.
♥
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just dropping by to say hi to everyone...and send all my sistas a great big HUGGGGGGGGGGG
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Hi Everyone: I am waiting for my surgeon's office to call me with two appointments they are scheduling: Oncologist and Radiation doctor. What are Radiation doctors called?
Anyway, while waiting I'm looking up various drugs and info. about radiation. The more I read, the more I don't want any of it! I'm 75 and have atrial fibrillation, high blood pressure and osteoporosis. It seems a lot of these drugs and radiation can cause damage to the heart and bones. I assume the radiation guy will push for radiation for me, but hopefully the oncologist will be neutral---I want to weight all the pros and cons before I agree to any further treatment.
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srbreastcancersurvivor - Welcome to the group. You will get lots of good information and support here. Radiation doctors are called "Radiation Oncologists" I would recommend at least meeting with a rad onco to see what he/she has to say based on your medical history. The newer machines and the way radiation is set up is much better than years ago. The treatment plan is much more precise and does little if any damage to vital organs. The bottom line - it is your decision whether you have radiation or not. If you don't like what the first rad onc says, get a second opinion.
My diagnosis is very similar to yours and I did 30 radiation treatments. I really did not want the treatments but also looked at it realisically - it is an added insurance policy that I won't have recurrence. We need to look at it from that side of the coin and do everything we can to keep ourselves healthy.
Keep us posted on what you decide.
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SRBREASTCANCERSURVIVOR----why dont you come over to our Feb.rads thread.Both Jo and I are on it.Also many other sistas who are loving and very supportive and informative.We kinda know each other.Some of us were on the Jan.thread too.We are here for you.hugggggggggs K
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srbreastcancersurvivor - if you chose lumpectomy as your surgery to remove the BC, radiation therapy is traditionally part of that protocol, so the Rad onc will probably be pretty insistant that you have the radiation therapy as it completes the surgery phase of your treatment. Lumpectomy and rads was suggested by my BS but I chose BMX because my tumour was in the left breast and too close to my heart for rads for my liking and also because I did not want to have rads, unless absolutely necessary, for many reasons. Once the surgery phase is completed, drug therapies are very often suggested by Oncologists for early stage BC as 'insurance' against recurrance. This can either be chemotherapy (Iv administered drugs) or hormone therapy (daily pill) or both and all of them will have some effect on your body - some people cope very well but others are hugely affected by the treatments and unfortunately there is no knowing who will or won't react, but generally any Side effects will go away when you stop taking the drug so particularly for Hormone therapy it could be worth a try if the onc thinks it will be of significant benefit for you. Educating yourself and as you say, weighing the benefits of taking the drugs, the negatives of Side Effects and the possible impact on your quality of life, is the best way to make the right decision for you - good luck with your decision.
Jo - thank you for your understanding about my onc. Over here you either go through the public hospital system or if you have private insurance you can opt to be treated privately. I did have insurance and opted to see the 'top' BC onc in NZ privately but he is 2.5 hour drive away and is not only the top BC onc but the guru in most cancer treatment it turns out so he is, as you can imagine, a VERY busy man and saw me as a closed case after my one 20 min visit. Having seen him and been given the 'all clear' so to speak, I cannot now go to a public hospital onc and ask to be taken on as a patient (they are so overloaded with new patients that I would probably never get to see one anyway) so my GP and I are out in the wilderness doing our best. My GP is great and I know if he thought there were any problems he would have me seeing someone pronto but I kinda feel he is not a specialist onc and so doesn't do any tests to check for BC and it is all a little unsettling when I think about it. Mainly just hope like heck the onc is right and that I am a closed case!
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Rae-If the top Dr.said you are a closed case I think thats great news.Your other option is come to America and see my wonderful Drs.You can stay with me.lol.If it feels right it is right.God bless you my wonderful sista.hugggggs K0
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Rae- for ll my ups and downs with AIs I have to remember something...one of the top docs here said the same thing to me...for heaven's sake he agreed to email me if it made me feel better since he moved across the country to Phoenix to open a new BC center. I forgot that the last conversation with him after all the pathology reports were in...it was basically "...take an AI for insurance- you have no cancer-live your life...." Now we all know there is always a chance that there may be nasty little things floating around, but...that ws obviously true before BC. If you trust and like your GP I say you are on the right track. Even my new onc (since I wasn't comfortable having a frigging email relationship with an onc) said virtually the same thing...I thought of all of this the other day while I was nuts and stopped the process of getting another top onc that was recommended by first onc...reason being is they are all going to push me to take an AI -I am starting to realize that this is just standard medical practice for where we are now in BC knowledge. So instead of jumping through new hoops with a new doc to have the same result...I am sticking with this one and will see her every few months-I will stick with my own version of AIs and she will continue to monitor my hormone levels (last full panel and everything was stunningly low with the SEs to back it up-just not horrific ones) to pacify me for stayingon the AI (which I am not but that is ok, I want the full panel hormone tests and markers she runs ...she also wants to do a PT scan in two months to measure some "spots too small to classify" on my liver from before the BMX and the top onc thinks it is a big waste of time, as does the BS. But I will do the PT scan just to clear my head since I had put it to rest when both the first onc and BS said it was all benign and to forget it, then she brought it back up when she went through all of my records, so, being who I am, the one who will bite into something and shake it around, drop it, pick it up and shake it again...well, now that it is back in my mind...I will get the damn PR. GEEZ I exhaust myself. I hope you and yours are safe from all the turmoil and stay that way...and certainly glad you have no permenant heart damage.
Sheila- cracking up again-the avatar fits indeed:)))))
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Back to the arm thing, breifly. My grandmother said they were happy to see you arms, when you waved, they didn't stop.
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there is simply no place else on this planet where I would find myself now laughing over something that was devasting mere hours ago....go figure?:)
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Meece - you are a crack up!0
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If I didn't have a sense of humor, I would crack up.
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srbreastcancersurvivor- One more thing about radiation. The standard protocol in Canada has become 3 weeks, rather than 6 weeks. A study published last year in the NE Journal of Med found that the long-term prognosis is the same under either protocol. I did the shorter protocol and it's something you may want to ask about if you do radiation.
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Toni:
Just reading where you make mention of the standard protocol in Canada re radiation therapy. I had my radiation therapy in Oshawa, Ontario CANADA. I had 25 RADS 5 BOOSTS.
AnnetteK:
About the flabby arms, I noticed this too very much of my right upper arms several months after surgery and radiation therapy.
All:
I read some where on the internet, that if one is gonna go up in an airplane that if had lymph nodes removed that it is advisable to wear a compression sleeve. So I have to wonder why does flying have an effect on the arm?
Thanks, Charmaine
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Interesting toni30 - has the protocol changed for BC only or for other cancers as well? As far as I know it is still 6 weeks (30 treatments) in NZ for BC. Waiting lists are long here so I think they would grab at any chance to shorten them if they could - we may see an alteration shortly. Will have to keep an eye out for that one.0
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Hi & welcome srbreastcancersurvivor.
i have to check my journal see how many I did, i know it was more than 30.
rae...I'm glad you are back posting again we missed you sister.
Hi Everyone.
Annettek...your avatar became an automatic laughing machine for me. LOL
Can you find the original one and post it here. hahahahahahaha
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Charmaine - I cannot tell you the scientific reason for wearing a sleeve while flying but I can tell you that my LE flares up horribly at higher elevations (I haven't flown yet but I know I will have to wrap if I fly, a sleeve just won't cut it for me). If you check out the http://www.stepup-speakout.org/ there is a lot of information on LE, risks and prevention.0
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have a good trip, val and a safe one.. Raj; its' sp good to see you "out and about" the threads! 3jays
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Thanks for the invite! I will post on this site from now on. PS still no word on my appts. being scheduled, but I'm still sore and still have some glue on the incision so am in no hurry!
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oops! Granny invited me to join the Feb Rads not the calling all stage 1 sisters. Either way, I really appreciate everyone's comments. I talked to my cardiologist's nurse today about my radiation fears. She said it would be unlikely that the rads would damage my heart, but if I still have concerns after speaking with the two oncologist she wants me to talk to the cardiologist too. (He was too busy today to speak to me and my appt. was only with the nurse for a pro-time anyway)
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srrbreastcancersurvivor - Hang around with us anyway. This is a wonderful group to join. Not only do we support each other, we manage to have some fun along the way.
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