CALLING ALL STAGE I SISTERS
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Thanks ladies, for all your kind words! I will be seeking out help as necessary - I need to not be under stress while dealing with this disease - it's already stressful enough.
Shiela, glad your Onc Appt went well! What is everyone doing as follow up for appointments after diagnosis? Shiela you go every 4 months?
How often do you all see your Onc, Surgeon, primary doc, etc? My surgeon and Onc said that it would be once a year - but another Onc that I got a second opinion from said I should be followed more closely than once a year. I like that Onc much better and am thinking of switching - just curious as to what everyone else is doing.
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I've been seeing my onco and general surgeon every 3 months (not both in same month) and gyno annually. It will be 1 year in August since my BMX and then the onco and surgeon will go to 6 month intervals, which we will alternate so that I see one or the other every 3 months. I feel good about this since they both do an exam. Frequency may depend on what type of ongoing treatment you have... e.g., tamoxifen, as well as any complexities you may have.
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I see Primary DR every 3 months for maintenance visit for BP and Cholesterol.
BS 1 a year. (I only had a lumpectomy+reexcision.)
Oncologist was every 3 months the first 2 years and every 4 months after that.
Usually is once a year after 5 years but didnt change it and I didnt question it.
Im waiting for the phone to ring to get the Blood work results but its not happening and Im gettin little uneasy.
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I just got the call from My Oncologist.
Doing the Happy Dance.
Sheila
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YAY YAY YAY!!!!!!!!!!! Doing the happy dance with you!
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Sheila - that's wonderful! I love the penguins!
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Yay Sheila.
I see BS once per year; Primary once per year. Med Onc just went from 3 to 4 months and after another year will go to 6 months for years 3-5 on Arimidex.
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Yah Sheila doing the happy dance with you!!! Don't know where you found the penguins at but I love them!!
As for my oncs, I am suppose to see my Rad Onc every 3 months, however since I am seeing my Med Onc every 6 months the Rad Onc agreed to see me every 6 months and the way it works out I am seeing one of them every 3 months. My primary has me on yearly visits. I also see my Breast Surgeon every 6 months (for a while I saw him every 3 months right after surgery), he may put me on yearly visits after November. I am seeing the Plastic surgeon every 3 months till I have surgery for reconstruction. All I do is see doctors!!!
I am well taken care of ladies.Renee
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What a relief that must be Sheila! As hard as we try there will always be worry going into tests and so good news must feel like winning the lottery.
I only saw my onc once and he said 'very good prognosis cancer - IV chemo more harm than good for you but hormone therapy will be a 3% help - I won't need to see you again - here's my card if you want to contact me' - in an out in about 20 mins - gulp! Am glad he was so positive but I must admit I felt a little under cared for.
Now surgery is finished I will see my surgeon every 6 months for two years then once a year for 2 years. I see my GP three monthly for BP and Femara script and now cholesterol tablets as it has skyrocketed due to Femara we think. No tumour marker tests or any of the other tests you ladies seem to get over there - I asked but GP said not done here.
Definitely feel less cared for than you ladies over there!
Rae
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Rea, that does sound scary. I feel better even just having my blood checked every six months. I am glad your Onc was so positive. I guess it just depends on the protocol where you live.
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Rae... how about radiation, did you have it?
All my oncologist does is check my breasts and draw blood. Not every oncologist do Tumor Marker Test. they say its not very reliable.
My GP can order those tests too. Once a year i get a complete blood work and a physical by my GP of course breasts are always included., BS checks my breasts. Gyn checks my breasts. i don't think I need to be checked that often since I don't do self exam i guess it's better that someone is always checking them.
Like Meece said every country has their own protocol. As long as you are feeling good, just enjoy life.
Hugs
Sheila
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Off to bed but just wanted to tell you, Sheila, how happy I am that you are doing the Happy Dance. Wonderful news on blood work !
Back on the 12th.
Have a wonderful Holiday!
{{hugs to all}}
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Northerngirl.....Yes I did have radiation for 6.5 weeks. I believe i had every possible treatment maybe just because I opted a lumpectomy. My BS said that was the best thing for me having the lumpectomy and I have no regrets.
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Valerie have a safe trip and enjoy the little ones.
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Shiela: How awesome!!! I am doing the Happy Dance too. What a relief it must be for you.
Valerie: Have a safe trip!
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Thanks barb, we have a big happy dancing group tonight.
How are you feeling?
Good Night
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Northern Girl....yes there were other factors as to why I had Bi Lat Mx with Immediate Diep...I am BRCA 1 positive so my chances of getting BC are much higher than the general population and reccurrance rate is now down to less than 10% after doubles masectomy. I was offered a "lumpectomy" with radiation or mastectomy without or possibly with depending on the SNB. I didn't want radiation and the chemo was needed since I had ER Positive BC with no nodes. I hope to be done with this BC after I heal from the DIEP and will see an Onocologist in month. My TAH put me in immediate surgical menapause and I needed the ovaries out for BRCA 1 gene as well.
I have some skin irritation now that I am starting to put intrasite gel in and have a few issues that will be corrected at the time of revision but i am so glad the decision is done and I wish you the best of luck in making yours. Lumpectomy sounded good to me but the radiation to the skin may injure skin for later recon....just keep asking questions and everyone has their own private journey...no one is "right" imo. I just know that some even have double mastectomies and can get a recurrance! You need to do what is best for you and get more than one opinion. My BS, one of whom I have known personally so I trust a lot said the percentage was just tooo too high for me to do a lumpectomy and she wanted me around for 40yrs!
I caught this BC early and wanted to take advantage of that and not have to do radiation or chemo. I hope this helps. 0 -
Sheila
My cancer was lobular and I chose mastectomy instead of lumpectomy to avoid radiation if possible and because there is about a 60% chance of not getting clear margins with lumpectomy surgery - I didn't want to be undergoing multiple surgeries. I then decided on a prophylatic mastectomy on the other breast because the rate of occurance in the other breast with ILC is 3 times that of IDC (about 24%) and I wanted to be done with this now - not have to face it again in the future if I could avoid it. Luckily my margins were well clear of the muscle and chest wall, although he did take the top layer of muscle at the time of surgery as a precaution, so I didn't need radiation.
I used to do BSE - waste of time for me as ILC is hardly ever found as a lump until it is huge - and my surgeon said to carry on with BSE on my reconstructed breasts because a recurrance would form a lump, even if it is lobular, as there is little tissue for it to 'hide' in. So all in all it is up to me to monitor myself again. At least I am spared the annual 'squash' now.
I am looking forward to my warm electric blanket bed tonight. Don't like winter anyway and the cold makes my 'Femara' hands and feet even more uncomfortable.
Night ladies
Rae
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Shiela: I am feeling 100% better. Thanks for asking. Monday I started feeling better. I'm not sure why this treatment hit me so much harder than the other 2. I'm hoping it was because I way over did it the week before treatment. I am having a lot of the emotional stuff now which I didn't have before, but I think that is more because of the issues we are having with my older son. He has been very hurtful towards me. I know he is hurting and won't verbalize anything so he is taking it out on me. But it is very hard to stay positive when your child telling you that he hasn't cried since I told him because he doesn;t care that you have cancer (that was one of the mild things he said to me) We have set up some appointments for him to talk to someone but they can't see him until the end of July. I did ask to have him put on a cancelation list. I just hate this damn stuff. I just want things to be back to normal. Sorry for complaining I just feel real comfortable to talk to all of you instead of always crying to my DH.
Hope everyone has a great holiday weekend.
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Thanks ladies for all your replies about follow-up care once treatment is over. I will clarify this with my PS, BS and Onc to see what the standard of care is.
Redbarb - how old are your kids? I'm sorry to hear about the emotional issues with you son - perhaps it is normal for his age group and his reaction to your diagnosis and treatment? I am 100% sure his words are not how he truly fears - but rather he is speaking out of fear of the disease. I'm glad you are seeking help and I'll keep my fingers crossed that an earlier appointment becomes available to you guys. Don't ever feel like you are complaining either - vent anytime - we are all here to listen!!!
Hope everyone has something fun planned this weekend!
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Rae....I can relate to you because I don't like the winter either. We were having couple of beautiful days. I'm on Femara too almost 4.5 years now. I noticed the last 6 months or so my hair started to thin I think its a SE of the medicine. You keep warm. Ill send you some warm weather starting Sunday.
barb.....The children boy or girl they act so differently . My older DD reacted so differently than my younger one. Maybe i tried not to make a big deal maybe she thought I was dying. We talked occasionally at the beginning. I heard from her friends that she was a mess and crying all the time. She came to with me once to the BS, what a mistake that was. Poor thing was so nervous and scared I thought she was gonna pass out.
We made a deal I said to her if you can pick me up after chemo I will feel very happy to see a familiar face, my own daughter. Thats what we did.
My younger one who was graduating from college month after I was DX acted differently. I could talk to her. Maybe she was becoming a Social Worker and had more experience how to deal with it. And I had a long talk that she will continue on her good work been on the Dean List and graduate with honors and I wouldn't have it any other way.
Until today I can talk to her openly about my tests and she listens and understands that once every 4 months I need little support.
Sorry about the long post. but i just wanted to share my own experience with you.
Good Night to All MY Sisters, Happy 4th of July weekend.♥
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Hi ladies
Thank you MRDRN and others for sharing your experience about surgery options.
We live in a small town with no oncologists and no plastic surgeons. We are about 8 or 9 hours away from Toronto where we could access lots of services. Our doc will set us up with contacts in Toronto, but I am not sure how easy it will be to find second/third opinions. I am really interested in the immediate reconstruction using your own tissue. I don't know enough about it, but I have some time to learn. Surgery will be in a few months as I am undergoing chemo now.
In_cognito: wish I was near you to lend some support your way. We LOVE little ones. Plus I have two older daughters who are wonderful with children. It makes such a difference to have support on the home front.
My oldest daughter just finished university this week. My hubby and son have gone to Ottawa to pick her up and move her home as she got a job in her field. I have not seen her in 2 months and I am a bit worried how she will take it to see me now bald and weak. My younger daughter has stayed home with me. She has been a fabulous support.
My kids have been so supportive and kind. I am so lucky. We have been great with communication and so far, things have been okay.
I am one week out from 2nd chemo, and 4 days post surgery for port. The port site is more sore than I expected. Other than lots of heartburn, things are feeling okay.
best wishes...
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Hi NorthernGirl - not sure where you live in the north but I'm assuming its in Ontario.... There is a thread called "The Canadian Connection...calling all canadian women" and you get some advice on that thread from the Canadian women about second and third opinions. They are a great bunch of ladies and would be very helpful. Where are you from? My husband's family is from Timmins. I live in Mississauga and was treated at Credit Valley Hospital for chemo and radiation.
Sherri
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thank you Sheila.everything he told me now changed.i asked for the path report and i got it im more confused then before.i had a breast lumpectomy first then lymph node biopsy.lymph node axillary excision biopsy,metastatic carcinoma consistent w/breast primary,extranodal extension of tumor identified. 2-breast reexcision no residual tumor identified.then i asked questions.yes to insitu.not stage 1 but 2.not 1mm but 4mm margins 100%clear.cells in lymph nodes changed the stages.he removed 1 node.that was wed.today i went to my internist and she felt my breast and she felt a lump.he examined me on wed.can a lump grow so fast from wed.to fri.and now the holiday weekend.i have to go 4 a second opinion.and no arimidex ever from the bad reaction.he wants me off the meds until sept.with no visit inbetween.i am in the twilight zone right now.thanks for all your prayers.GOD BLESS AND GOD HELP ALL OF US..IM LOSING IT RIGHT NOW
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I SEE SHEILA DOING A DANCE.DO YOU DANCE LATIN????YOU JUST PUT A SMILE ON MY FACE.CONGRATS.
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granny, just sent you a PM (upper right of page)
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Hi Sherry / Sugar77
Thanks for the info about the Canadian thread.
Small world.... I am in Timmins. We have been going to Sudbury for onc appointments, and I opted for Toronto for mastectomy/reconstruction surgeries in a few months.
How are you feeling now that you are done treatment?
I have only been thru 2 cycles of chemo and can not imagine how I will handle going thru this for most of a year. This sucks.
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Hi granny....I read your post but I'm not sure i understand it.
I wish i could help you. There are threads about LCIS and ILC on these Boards.
Going for a second opinion is the best thing. Make an appointment right away.
Why don't you post your DX over there. I'm sure you will get more information.
And come back here let us know what you found out from the other ladies DX with LCIS or ILC.
No i don't know how to dance i wish I did.
Sheila
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thank you sheila.you girls have been a lifesaver.i have an appt.for next wk.if i can get my film in time.the word cancer is still scaring the daylights out of me.i am still in shock.my story is crazy.i am 69.have 3 mamos in my life. i am a 34dd ..skinny.no history.i had a pain.had the mamo.from questionable it went to suspicious from a little biopsy it went to surgery.the first dr. said while i was on the table ready for her to do the biopsy oh no.i cannot do this.too close to the nipple.ok.this started back in oct.09.and it didnt grow.i feel like its growing now.
thanks for letting me vent...i love you sisters.GOD set you to me.I pray for all of us every day.
Sheila i would love to teach you to dance latin.i danced for 30 yrs. i run an excercise class where i live.anytime you are ready i will teach you how to dance.I live in New Jersey.
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