Class of 2009 - Sisters in the same time frame
I'd like to begin a topic for those of us diagnosed in 2009 with IDC. It would be great to have others who are going through the same things at the same times to talk with. We might find we are experiencing the same side effects of our hormone therapy or worrying about the same latest ache or pain. I am one month post radiation therapy and due to see my medical oncologist next week for the next phase of my treatment. It would be great to know what other doctors are doing for follow up. What drug are you taking? When did you have your first post-treatment mammogram? Is your doctor ordering follow up scans or are they waiting for signs or symptoms? Looking forward to hearing from you!
Pam
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Hi Pam. I was diagnosed January 2009. I finished chemo May 28 and had bilateral mx on June 30. I just recieved my prescription for Tamoxifen yesterday and will have it started by Tuesday (I am waiting for the pharmacy that my onco nurse said they use a lot to send it to me). I would love to talk with others on a similar time frame. Because I did chemo first my path report from surgery showed that I never had node involvement and I ended up with Stage I grade 2 IDC er+/pr+. I am following up with a Radiation oncologist for piece of mind but surgeon and Onco say no radiation. I am leaving it up to radiation onco to say no for sure. I am in the process of recon and will have my first post surgery expansion next week. When I was diagnosed I had bi lateral IDC and the tumor in the right breast (that I felt that started this ball rolling) was 2cm, grade 2, er+ but it disappeared completely from the chemo before surgery. Left breast tumor which was smaller to begin with shrank from chemo. I do not know yet about follow up scans but I see my onco in four weeks for a Tamoxifen follow up I guess and I will ask then. I see surgeon in four months and he is a scan guy so maybe he will be the one to do that? Maybe someone farther along can answer that question. Thanks for starting this topic!
Jenn
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Hi Pam & Jenn -- I was just diagnosed on Tuesday. Since May I've had mammo (calcifications), stereotactic needle biopsy (LCIS), MRI and then lumpectomy -- to see if anything else was lurking with the LCIS. Glad they did it ... my report says 5cm mixed PLCIS and DCIS and 4mm IDC. I go see my surgeon on Monday. None of this but LCIS showed up on MRI, as I'm very dense and hard to read on film. So now I go back to surgeon on Monday. I'm sure there will be talk of getting sentinel lymph node to biopsy, maybe more surgery, maybe radiation.
I've already begun looking into BM with DIEP reconstruction. I'm 48 and have good insurance, and really don't want to have to wait, watch and worry for the rest of my life.
Lee
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Hi Jenn and Lee,
I am sorry we are all going through this but It is so good to have virtual friends with whom to share. You two have more in common... I had a lumpectomy in March, radiation May-June-July, and am now on Arimidex. No Chemo but I am still nervous about skipping that step. I am 62, healthy, active, "0" risk factors. I see my medical oncologist for the first time since just after my surgery this coming Monday. Lots of little worries have come up in the month since I finished radiation... guess an idle mind can conjure up all kinds of possibilities. In spite of all the Arimidex side effect horror stories I am tolerating it very well... except for the pain in my wallet!
Jenn, everyone says radiation is ever so much easier than chemo so you have put the hardest part behind you. I hope to find out what's next on Monday... will post as soon as I know.
Lee, Have you already had a lumpectomy but not sentinel node biopsy? I did not know they were done at different times. But I don't know about DCIS and LCIS. Good luck Monday!
Pam
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Hi Pam and Lee!
Lee I am so sorry that you were just diagnosed but you already seem to have a positive outlook which will help you tremendously with whatever treatment you decide on. I had the bilateral mx and am so glad that I did! True I had bilateral breast cancer and it was the most logical decision especially since I was 36 at time of diagnosis and turned 37 the day before my surgery. I made the decision to go all the way with surgery before I knew I had IDC in both breasts. I had a mammogram and two ultrasounds after finding the lump in my right breast that stated that there was nothing at all suspicious with my left breast. It was the MRI that found the small tumor in my left breast and also a fibriod in my right breast. Both of these had to biopsied with MRI guidance even though the surgeon was sure that the other thing in my right breast was a fibriod (and it was), but good piece of mind. I had my surgery June 30 and had very little down time after. I was in the hospital for two nights and took the pain meds for about a week and a half after that. I had immediate expander reconstruction started and I am already pleased with how they look. I feel better knowing that the ducts that started this cancer are GONE!!! It was the right decision for me if that helps you. They were so aggressive with my treatment one because I let them be and two I am young for BC. Pam- I have aches and pains every day right now and of course I think it is some kind of met but rationally I know it is most likely residual from chemo and surgery. I think us newbies will be scared of them all for a while. My grandmother had BC in 1968 and is a healthy 88 yr old now. A 41 year survivor and that is before chemo, rads, meds. She had a radical mx on the side with cancer and had to go on with her life.....I have no idea how she did it as it is not anything we have ever talked about but now I think I will ask her about it. Even though she had it I never thought I would and I do not carry the BRCA1 or BRCA2 gene mutations. I was young, healthy (I thought), and never had so much as a bad checkup and found out I had BC so I guess there is no rhyme or reason. Another thing that really sucked about this is that my husband and I had been trying to get pregnant for about 2 years before diagnosis. We had to make decisions about future fertility very quick and I think now we have decided that adoption will be our way even though I am premenopausal. He says that he just wants me to be around and we can love any child we are fortunate enough to bring into our family and if that does not work out we will keep babying our cats and use all the extra money we will have to travel! I really do envy the women on here that had children before all of this, though. By the way in my picture I am walking in a Race for the Cure in Raleigh, NC two weeks after my last chemo and I am wearing a shirt that says, "chemo grad-class of 2009". Just like your topic subject....glad I found it!
Sorry I went on so long! All my best,
Jenn
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I was dx 2/09. stage 1, grade 1 ER/PR +, node negative. I am currently on aromasin. was on femerra.(awful leg pain). still have some aches and pain but I can live with them. I do not need follow up films until next year(scary), I am planning recon in the fall. keep in touch, anne
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Hi Pam, Lee ,Jenn,Anne.
I was diagnosed on Feb 25 after finding a lump in my left breast. My time line goes as following:
Monday GP, Tuesday Mammogram, ultrasound and fine needle biopsy, Wednesday called back to GP to be told I have breast cancer, Friday Surgeons appointment and then Monday lump.
Pathology report on lump showed that I had some invasive cancer and that I would require a full MX but they decided to tell me this on my 45th birthday..Nice birthday pressie. Was actually glad that had the MX and not a 2nd lump as they found 2 other cancer sites in that breast that weren't showing on the mammo.Have dodged a smoking bullet though as there was no node involvment so I escaped rads and chemo but not the dreaded tamoxifen! Have been on that since late April and only a few SE , they are more annoying than anything. I don't know about you but I am very fatigued all the time so had blood tests today to see if they can find out if it is iron or something. That would be good as if not it could just be the tamoxifen and therefore could be fatigued for 5 years. lol
Anne , I am like you and will not have another follow up appointment until next year and I agree that is scary. Have this fear that like the first breast there may be some baddies that aren't being picked up by scans.
Keep in touch girls, together we can get through this
Big hugs
Viv
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Hi, I was diagnosed 16th Jan '09 and had a mastectomy with auxillary clearance on 19th Jan. Clinical report showed 2 tumors one 4 cm and one 0.6cm, invasive and in situ, 2 nodes involved. First chemo 5 weeks after surgury (4AC & 4T dose dense). Finished chemo in June and started radiotherapy 4 weeks later. I finish that tomorrow (15 sessions again dose dense). I visit my oncologist today - he will be starting me off on tamoxifen. Quite nervous really - I don't know what to expect on the tamox. I was 45 when diagnosed and pre menopausal. I never really had a full period since surgery, slight one at the end of feb and then small show at end april - nothing since then so I'm not sure will they come back or not on the Tamox. Even tho' it's been over seven months since diagnosis it's been really hectic and now that will all slow down and I'm not sure how comfortable I am with that idea. I don't know what it will be like to try and get back to normal as I have no energy am tired after the least little thing and still have residual pain in my arms and legs from the taxol plus slight tingling in my fingers and very sore feet!! Everyone around me keeps saying how great it is now that it's all over but to be honest it's not all over for me expecially as I'll have my cancer reminder pill daily for the next five years. Am I being childish and selfish??
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Ainm,
No you are not being childish and selfish! I feel the same way...the anxiety in taking the tablet every night is getting smaller and the sadness less sad though. But in my mind it will never be over because I think I will always be on the look out for something from now on. Never expected to get cancer and therefore came as a great surprise. That trust of my body is now gone.
You should check out the bottle o tamoxifen thread as they always have great advice and support.
Good luck today and let me know how you get on
Big hugs
Viv
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Welcome Ainm and Viv. I am sorry we have all had to find each other this way. Wouldn't it have been nice to meet in a support group for women who had had negative biopsies! But here we are, making the best of it and doing darn good. Through the years when I have had acquaintances (never a close friend so far) get cancer I just had no idea what they were going through. I know (hope!) I said the right things but now I realize how shallow my words were. What a hard way to learn a valuable lesson.
I am nervous because I only had a lumpectomy, no chemo, and 36 radiation TXs. Negative nodes but did have some lymphovascular invasion. My surgeon was the one who laid out my treatment plan and he said chemo was not necessary and discouraged mastectomy... made me feel like I was over reacting to my situation. The medical oncologist endorsed his opinion as did the radiation oncologist. So that's what I have gone with. Maybe my age (62) makes recurrence less of a threat. I sure hope. My Oncotype score was 25 (18%) based on tamoxifen for 5 yrs but taking an AI, which I am, is said to half that risk.
You are absolutely right Ainm. It is never over! It annoys me when friends say "well, you are cancer-free now." I try to smile but am sure it comes across as a grim grin. I don't feel cancer free at all! But I do feel differently about my hormonal therapy. I absolutely look forward to taking my pill every AM! I feel like it is something real and tangible in my fight... something I am doing every morning. I even look forward to going to the drug store to refill my RX which costs $339.00 for 30 pills!!! I've been on Arimidex for 6 weeks now, starting the day my radiation ended. So far, some insomnia, some joint-bone pain, hot flashes... but tolerable. I walk two miles a day and am trying to ride my bike 2 miles a day but knees are complaining. I think the exercise is my only defense to the SEs... that and naprosyn.
I saw my medical oncologist yesterday for the first time since before surgery and radiation. She says I will see her every three months. Each visit will include blood work (CBC and tumor markers) to look for warning signs. Also periodic mammograms, maybe once or twice a year. No scans unless something bad shows up in blood work or I have new signs or symptoms. It is SOOOOOOO hard to let go of DOING SOMETHING! It would make me feel better if they said I would have a full PET scan every six months but all that radiation would probably give you cancer! :)
It is so good to have you all to compare notes with. I have not run the whole gauntlet like most of you, ie. mastectomy or chemo, and admire your strength and resilience. Keep us all filled in on what happens next.
Pam
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Hi ladies,
It is so nice to find a thread where I think I really fit. I was diagnosed with IDC in Mar. 2009. After my mamo in Feb. I had a BSGI, Ultrasound, core biopsy, lumpectomy w/SNB, right mastectomy, port placement and began chemo on May, 4. I had some pretty rotten se's and became very anemic. A transfusion was mentioned but never done and went for my 2nd round on the 26th of May. I had an even worse time and was admitted into the hospital with pneumonia, anemia and dehydration and severe edema in my legs and feet. They did not even look human. In total I underwent 12 transfusions. I was on a constant drip of antibiotics and fluids. Fluid was drawn from my right lung which refilled. I had a chest xray every day and finally a CT scan. After three weeks a cardiothoracic surgeon was called in and he performed an open decortication of that lung. I just thought I knew what pain was! Now I have a scar on my back to match the mastectomy on my front. I went in the hospital June 2nd and came out on July 3rd. I went through 14days of home IV which I hated. I kept having problems with my port and had to make several trips to the cancer center so they could infuse my meds. When part of the plastic tubing broke off into the cap leading to my port, I said. "Enough!" I only had two days of meds to go. It was on a Friday night and Home Health Care was off and the cancer center was closed. After one of my phone calls for help was disconnected, I had really had enough. I pulled the huber needle out of my port, disinfected and bandaged it and went to bed. I have since had my port flushed and am waiting to see the onc on Aug. 13. I am still in some pretty gruesome pain as I am allergic to any narcotic pain relief. So my chemo is over and I'm not sure yet whether I will start Arimidex or not. I will find out on the 13th. To say I am a little bit afraid is an understatement. I have so many drug allergies. I know women have gone through worse but I am a chicken now. I don't want to play this game anymore. If only it were that easy. Sorry for the rant. I wish we all could be free. I think you know what I mean.
Good luck and best wishes to everyone!
Nancy
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Dear Nancy,
You sound like you have been through a torturous process. I thought that my treatment was tough but that is only until I heard about yours. You have a right to rant and this is the place for it. God bless you and I am sending many prayers and hugs your way. Don't forget your quote, "the good times do not last forever so neither will the bad". This too shall pass and I hope that things will get better very quickly for you. Stay strong and treat yourself with care. I am rooting for you!
Jenn
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Hi Pantufas
Big hug coming your way
Viv
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Dear Jenn and Viv,
Thank you dear ones. Your support means a great deal to me. Hope you have a good night!
Nancy
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Dear Nancy,
You have been through so much in such a short time! It just has to get better for you now. You are a survivor for sure! It seems so crazy to me that, after all that life threatening, extreme, intense medical intervention... now you are just hanging out there for weeks waiting to see your next doctor. No one seems to take this as seriously as we do. And you are not a "chicken." Maybe a wise hen who knows things do not always go as planned.
I hope you can find some comfort until you get to see the doctor. Long distance HUGS til then. BTW, love people from Virginia! I was born in Charlottsville but did not live there long enough to be a genuine native.
Good vibes.
Pam
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Dear Pam,
You are going to laugh, but I was born in Tampa but didn't live there long enough to become a native either.
You are not the only one who is wondering why I have been hung out to dry. If my pain keeps increasing and my temperature goes back up, I am going to the ER here where I live. That experience really did a number on me. It's pretty bad when you close your eyes at night and wonder if you will get to open them in the morning.
Good news though. My oldest son is bringing my only grandchild up from NC to see me this weekend. I haven't seen him since he was 7 mos old. He is now 13 mos. I asked my son if he thought Isaac would be afraid of me since I was bald? Isaac Sr. said he thought little guy would think it's normal since his daddy is bald. I had to laugh.
Thanks for the good thoughts!
Nancy
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Good AM Nancy,
Seeing your little grandson is likely the best therapy you can have right now. I've always heard men inherit the baldness gene from their mom's side of the family - you are just proving the theory. Isn't it wonderful how the little ones are so accepting of everyhing? I hope you have a great visit and that the time with your son and grandson renews your spirit to fight.
Pam
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Hi Ladies,
I was diagnosed with Multifocal DCIS this past April. I had a bilateral Mastectomy on June 15th with immediate Tissue Expander Reconstruction. The path report showed cancer only on my left breast it was extensive DCIS (5CM) with multifocal IDC (5.5mm, 3mm) and Mucinous Carcinoma (2mm). I had to have a re-excision on June 24th because I had involved margins. The re-excision was successful. My tumors were ER+,PR+,HER2- so I will definitely be on Tamoxifen but due to my age 31, my Oncologist is waiting on results from the Oncotype DX test to see if I will benefit from Chemo. The waiting stinks. Hopefully the results will be in next week and I will finally know what my treatment plan is.
Bless you all. I know this year has been tough on us all.
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Hi Ladies -- You all have been through so much with IDC bigger than 1 cm ... you are heroes! My journey is just beginning. My invasive is tiny (4 mm) but I have extensive DCIS that extended to multiple edges of the 5cm mass they removed. It was a mixture of PLCIS and DCIS. The lumpectomy was only to biopsy the area, cuz they thought it was just LCIS ... but the DCIS and IDC surprised them. So now, since BS has to get nodes and more tissue to have clear margins, I need a MX. Given the LCIS and high risk for the other side, I'm having BMX. Right now I'm investigating plastic surgeons. I'm looking at Implants vs. DIEP. My surgery probably will be mid-September or early Oct.
Lee
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Hi Lee,
I think the waiting phase, like you are in right now, is the hardest part of treatment. So much anxiety waiting for something to happen! Since you are having a MX does that usually mean no need for chemo since your stage and grade are so favorable. What is considered "good" margins? What does LCIS stand for? You sound so strong and confident in your posts! I was still a basket case a week or two into it. But I did not find this site right away and was in the dark about so many things.
Keep us in the loop.
Pam
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Hooray!!! I got the results of my CBC and CA 15-3 tests today. All good reports. I had a CBC done before surgery but had not had a tumor marker test before. So... I was doing some research on line to understand the test and what I read says it is indicated to monitor metastatic tumors but not for Stage 1 post-lumpectomy follow up. I was very glad my MO ordered the test but I did not ask for it. I am pretty sure it is just part of her routine follow up and I think she said it would be done regularly. Does anyone else' oncologist use this in normal follow up?
Pam
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Pam,
Congrats on the good reports! I have no idea about normal follow up tests since I am still in the treatment planning stage but will ask my Oncologist what follow up tests I will have when I see him next week and let you know.
Take Care!
Yasmin
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Hello Ladies
I was d/x on the 6th of January with IDC. I had a left breast mastecomy on the 13th of January. (5 days shy of my 41st birthday!) I had a bone scan and CT scan in February, both came back clean. Started chemo March 3rd, finished June 17th. Started radiation on July 13th and will finish August 4th. I also started Herceptin July 21st. I was highly ER positive also so I am taking Zoladex shots and will start Femara in August while I am waiting to have my ovaries removed. I am meeting with the BS on the 12th of August to talk about have a prophy m/x on my right breast. My hair is finally starting to sprout - now only if my eyebrows and eyelashes would grow too!! I meet with my medical onc in September to discuss the next course of treatment ie: scans, etc. I feel like somedays that I have been through the ringer!!
I am so thankful for this board. The ladies on here are truly a blesssing.
Take care all!
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Thank you Yasmin. I am actually thrilled to get the blood tests. Seems like the first good report since this whole ordeal began. What I read suggested doing the CA 15-3 was no better than just waiting til something bad happened and then dealing with it. But I am a person who reads the last page of a book when I can't stand the suspense... and this cancer stuff is the worst kind of waiting! I hope my MO runs the test every visit!
Hi Kim. Thank you for joining our group of 2009. I think you and Jenn are the senior member... not in age, in time since DX. We have a lot to learn from your experiences. All the younger women have so much to go through with more surgery for ovary removal on top of everything else. My heart and hopes go out to you,
Is your hair coming back in curly? That seems to happen so often. We visited NS a few years ago. You live in a beautiful place. Quite different from Florida!
Pam
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Hi all,
Viv and Pam - Well saw my oncologist on tuesday. He told me to take paracetamol for the residual pain from the taxol chemo because the tamoxifen can cause joint and muscle pain too. He said I should try to manage the pain so that it doesn't interfere with my mobility. I'm to try to walk for at least 30 mins everyday (ideal speed 3mph) and as I am obese he would recommend that I lose weight to improve my prospects. He said I have just under an 80%, 10 year survival rate which I guess is quite good - although statistics were never my strong point!!
So I've started tamoxifen and he will check my ovaries in 2 years time and if they have shut down he changes me to a different tablet which I would take for 5 years, if not he waits and tries again 2 years later. I was thinking that taking a pill everyday would be like a little daily cancer reminder, but like you said Pam at least it is doing something so I am going to look on it as my 'quality of life' pill.
I go back to see him in a month to let him know how I get on with the tamoxifen. He said that for the next two years I will see him or my surgeon about every 3 to 4 months - so that is some comfort - surely they would spot anything suspicious.
Oh one odd thing - he said my calcium levels were up!!! I'm to have a blood test the next time I go to him so that he can monitor it. He said I may have a problem with some gland (situated near the thyroid) that controls calcium in your system. If anyone knows anything about this I would love to hear from you - the only thing I can find about it on line connects it with bone mets I hope that's a worse case scenario.
Pam - to be brutally honest with you there have been times over the past few months when I felt that unless someone had exactly the same diagnosis and treatment as me they couldn't know how I felt and as such that is true - but that is my fault because as such no one can know how I cope. Now I realise that whether you had chemo, rads, or whatever level of surgery or combination of these - we all have one thing in common. A breast cancer diagnosis. So don't apologise for not having mastectomy or chemo and believe me you are just as strong and resilient and you are a generous person because the time you spent replying to my post is invaluable to me. Thank you - and keep posting!!!!
Nancy - I'm so sorry you have had to go through so much but keep strong and together we will all beat this!!
Love & hugs.
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Hello ladies. was dx in 4/09. Had bilateral w/expanders on May 22nd. I just had my first fill yesterday and am a little sore today. Did not have to do chemo (boy did I do a happy dance after getting two opinions!!!) because I had an oncotype score of 11 with 7% recurrance. I will be on tamoxifen but I don't know for how long because of being pre-menopausal and being 51 yrs. old. It might change along the way. I actually took my first pill this morning (bottle was sitting on the counter for a week) and am very scared of what lies ahead. I'm glad I found this thread!!!
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Please pray for me today ladies. Have to leave in a few minutes to go back to the hospital. Fluid is building up in my lung again. Sure don't want to go through the pneumonia twice. I know what is waiting for me. Just when we say we can't take anymore, we do. You have all been so kind. I feel as though I'm taking you with me for moral support. Thank you bunches!
Nancy
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Nancy you are in my thoughts. God Bless you..will be praying for you sweetie!
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Just a quickie to add to my favorites... will catch up with everyone later
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Thanks Ainm, for not considering me a big baby after learning what so many of you have been through, Even though my stats are pretty favorable this whole breast cancer thing has shaken my confidence. I was always the "low maintenance" daughter-wife-mother person. You know, the one who took care of everyone else and never needed any help. Learning I had breast cancer just took the wind out of may sails. Friends and family are so supportive and positive but that just makes is all the harder to share one's secret fears and doubts. It's so good to have this outlet for saying all the things that are in our hearts.
Hi Don23... welcome to the discussion. It's good to have someone with similar stats who took a different treatment track. I guess my greater age (62) made my BS discourage me from mastectomy... it was my first thought. And chemo was not recommended for me inspite of intermediate scores on oncotype-dx. I am glad to not have had to go thru it but am nervous that I did not do everything. I am on Arimidex which is thought to improve recurrence score over Tamoxifen so have my fingers crossed. It is easy to not recognize 18% recurrence score is the same as 82% non-recurrence. I've got to think that way.
A friend started out on Arimidex and switched over to Tamoxifen and says she is tolerating it much better. Of course most of us who post here are complaining about something... we do not hear from the girls who are getting along famously
Good luck with the drug.Nancy, we are all thinking of you. Want you to get home to see that little one!
Pam
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Hi ladies! Hope the class of 2009 is doing well. Nancy- good luck with everything at the hospital and stay strong. I will be praying for it to all go smoothly for you this time. Big Hugs! I did chemo before surgery and am scheduled for an expansion next week. Can anyone tell me what to expect with that. If it hurts does it disrupt the rest of your day? I can answer any chemo questions anyone has if you are just starting out with it and I have now been on Tamoxifen about five days and I do not want to jinx it but no horrible side effects yet. I am premeno though and some of you ladies may be getting the AI's instead after your other treatments. I have heard that they are tolerated pretty well although I just had a friend tell me she started on Femara and felt like she was back on chemo again and had to stop. She wants to go back on Tamoxifen. I am hoping my experience with it stays good. Love to all!
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