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SandraB 
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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 Posted: Nov 13 2011 at 9:28pm |
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Ahh... the Scottish winters. I was there in Spring one year and thought THAT was cold! The gym idea sounds much more do-able. I'm looking forward to some beach days this summer.
Were you able to have the tumor removed without getting a mastectomy? I had a lumpectomy and had to go back for a re-excision because the margins weren't clear. The re-excision was very quick.. maybe 15 minutes, if that. The axillary clearance was more painful. But even then, it wasn't as tough as I'd been expecting. It is coming up to 5 weeks post surgery and I am completely recovered. No pain, no swelling, full movement of my arm. What a relief it is done. Mets in your scalp? That's a new one! Can't say I've heard of scalp mets before. How old are your kids? Mine are 2yo, 5yo and 7yo. Life is pretty hectic
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Rondee
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Joined: Nov 14 2011 Status: Offline Points: 20 |
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Posted: Nov 14 2011 at 10:13pm |
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Hi!
I was diagnosed with TNBC , invasive ductal carcinoma, grade 3, stage 1, plus DCIS, grade 3. I was diagnosed in August, just had double mastectomies with reconstruction using alloderm and implants Oct 20th, 2011. Today I went and seen the Oncologist and will be starting Chemo, FEC withn the next week or so. Has anyone with TNBC ever refused CHEMO based on what percentage you are for risk of recurrence over 10 years. Mine is at 17%. With chemo the percentage of it coming back drops down to about 9. This is not my first cancer. I had a resection of my bowel 6 years ago October 25, 2005 for carcinoid tumour. I still see an Oncologist for that one even though I have not had a recurrence. I also have MS, but am very mobile. I wish all you ladies out there the best of luck in your journey. Hugs to you all! Rondee
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 14 2011 at 10:25pm |
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Hi Rondee!
I was given the statistics on recurrence/survival based on chemo vs. no chemo and I can't think of what they were off the top of my head, but let's just say I had a less that 50% chance of being here in 10 years without chemo. It was a no brainer for me. I'm getting FEC100 x 3 and Taxotere x 3. I worry if it is the 'right' combination of drugs, but I just have to trust my doctors. We will probably be starting chemo at the same time.. assuming you're going ahead? Did you have chemo for the bowel cancer? Sandra |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Nov 14 2011 at 11:11pm |
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Hi Rondee,
Unfortunately, chemo is our only adjuvant therapy for TNBC. What is unknown is if any cells escaped through the lymph or vascular system and chemo is used to treat systemically in hopes of preventing a recurrence. Percentages are just that, they can't tell us who will have a recurrence and who will not. I was given similar percentages when diagnosed in 2009. Without chemo, I was told there was a 25% chance of recurrence. With chemo, 13% chance. Even with chemo, I had a recurrence. I always say that TNBC is tricky and doesn't play by the rules. Wishing you the best whatever you decide. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 16 2011 at 3:35pm |
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Hello Rondee and welcome~
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Rondee
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Joined: Nov 14 2011 Status: Offline Points: 20 |
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Posted: Nov 16 2011 at 4:06pm |
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Hi Sandra!
Sorry to hear that you have to have breast cancer and chemo. Are you triple Negative, what stage and grade? We will be going through with Chemo at the same time! I saw my surgeon yesterday and he encouraged me to go through with it. So I am? I think I just had a fleeting moment of insanity that maybe just maybe I didn't have to go through with it! Are you having the chemo every 3 weeks? I think I may have to have a port a cath put in as my veins are not happy right now from all the previous needle pokes. Are you having a MUGA scan done. I will doing that on Monday to determine if my left ventricle of heart is strong enough for the cocktail of chemo. I think I am only getting the FEC x 6. I did not have Chemo for the Neuro Endocrine (carcinoid tumour) of my bowel as Chemo is not effective with this rare form of Cancer. i do, however get an IM injection once a month of Octreotide. I just started that about 6 months ago because I started having flushing and wheezing which is associated with Carcinoid Syndrome even though I have no clinical proof that I have a recurrence of a carcinoid tumour. Keep in touch as I would like to know how you are doing with your chemo? Rondee
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Rondee
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Joined: Nov 14 2011 Status: Offline Points: 20 |
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Posted: Nov 16 2011 at 4:15pm |
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Hi Donna!
I will be going through with the Chemo! Saw my surgeon yesterday and he encouraged me to go through with it as he said the exact same thing you did, that TNBC is tricky and if chemo is our only option, then we should go for it. I do have local lymph involvement in the breast. Regardless of having a double mastectomy, I realize that some of those cells have already escaped into other places. I am so sorry you have had a recurrence! Where is the recurrence and are you getting surgery or chemo for that? As with my bowel cancer, I had 2 lymphnodes involved, but so far nothing has shown up on scans even though I exhibit signs of carcinoid syndrome, flushing and wheezing. Being that Carcinoid is a rare and slow growing cancer, it can take a long time to show up on scans and then even then, sometimes the tumour is there but doesn't show up on a scan. Cancer is such a evil sneaky beast! Take care Donna and I wish you all the best! My thoughts and prayers are with you! Rondee
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Rondee
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Joined: Nov 14 2011 Status: Offline Points: 20 |
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Posted: Nov 16 2011 at 4:16pm |
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Thank you!
I am happy to have found this site and be able to communicate with other TNBC ladies. Kindly Rondee
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Nov 16 2011 at 7:56pm |
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Rondee,
I'm glad you've settled on a treatment plan. With having lymph node involvement, will you also have radiation? I had my recurrence in an internal mammary lymph node (the nodes under the chest wall). http://www.breastcancer.org/pictures/breast_anatomy/axillary_lymph_nodes.jsp This was a year ago. Surgery wasn't recommended due to the location of the node. Since then, I've gone through chemo again and radiation. So far, I'm still NED and hoping it stays that way. Wishing you the best and keep us posted on how you do with chemo. Remember we're all here for you and will help you on this journey. Ask questions, vent or just share your feelings. You're part of this family now. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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indy
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Joined: Oct 27 2011 Location: fort lauderdale Status: Offline Points: 85 |
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Posted: Nov 16 2011 at 7:58pm |
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Welcome newcomers, I am one myself. Had my first ac chemo on Monday, neulasta on Tuesday and today am tired, did well other days , slept after chemo for 4 hours due to drugs added to chemo. I got a tip on taking claratin and aleve before neulasta and no bone pain. Of course I checked with oncologist first, who said to take for a few days. It is working! This is a good place to come because most support groups have limited information about TNBC. Take advantage of all programs your hospital and support groups provide, Laughter is the best medicine(we attended that last night). All the best to you
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Diagnosed 9/2011 at 58 TNBC node neg lumpectomy chemo X4 AC chemo X12 Tax, rad 30 treatment starting 11/14 all genetic tests negative
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 16 2011 at 8:31pm |
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Hi girls.
Rondee I did have lymph node involvement. They took 29 nodes and we found 3 were cancerous. I already knew at least on was affected because I had a very big lump under my arm. It was sore too and that's what sent me to the doctor. I didn't find the lump in my breast - I was still nursing my 2yo. Anyway, the surgery is done and the cancer has been cut out. I'm getting a port too because my veins are small. Did you get your lymph nodes taken too? Glad to hear there's no sign of the bowel cancer, but not good to hear about the symptoms. What does the Oncologist think it is? We'll have to compare notes on side effects and tips. (hugs) |
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 16 2011 at 8:37pm |
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Hi Indy. Thanks for the tips, will be taking all the advice I can get.
There are so many programs and resources for breast cancer. I'm going to a workshop in a couple of weeks to for tips on make up, wigs etc. Will be good because I'm not really a make up kind of person. Shame I had to get BC to learn this stuff! A bit of mascara and some lip gloss is about as far as my skills go. Hope it goes well for your next treatment. X |
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 16 2011 at 8:43pm |
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Rondee, I'm stage 2b, grade 3. My tumor was 2.5 cm.
I did have the heart scan and that was fine, I have a normal sized heart. My Oncologist didn't laugh when I said I thought I had a big heart! :-) Yes, every 3 weeks. Sorry I didn't answer your questions in the first post. I still have mum brain, lol. With chemo brain on top of that I might need someone to remind me what my name is. |
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Allmandy
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Joined: Nov 06 2011 Location: Scotland Status: Offline Points: 23 |
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Posted: Nov 21 2011 at 5:46pm |
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Hi Sandra,
It took a while to remember where this site was. My children are 12 and 9 which means my daughter started high school just as tis happened! We've just been to parents evening and she seems to be coping well with all the chaos in her life. Just had the second of 6 FEC 100 last Wednesday. Saw the other oncologist on the Tuesday and my blood results were all better than before the 1st treatment began so my diet of corned beef, haggis, spinach and baked beans obviously counteracted the period from hell I experienced the week before! Unfortunately she changed my anti sickness tablets which resulted in muchmore sickness so I had to have 2 days off work in order to recover. I'm now back to morning sickness and eat Ritz crackers in class if it gets too bad. My 6.5cm tumour was removed with a no holes barred complete mastectomy and axillary clearance with 27 nodes removed - all clear but two enlarged. Luckily I'm left handed because I've had seroma issues on my right chest wall and laterly under my arm pit. I had it drained again just before Chemo 2 so can move my arm freely again. The hair is thinning but I've still got loads to go and the kids at school are now used to me wearing hats so nobody knows what is or isn't under them. After the FEC I get a three week break then Radiotherapy every day for three weeks. Roll on Easter
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indy
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Joined: Oct 27 2011 Location: fort lauderdale Status: Offline Points: 85 |
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Posted: Nov 21 2011 at 6:05pm |
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Hi I hope everyone has a Happy Thanksgiving! Today my husband I joined a warehouse club to get at least the otc drugs much cheaper than the grocery or drug store. Still feeling good, going to our regular support group tonight with my friend who is waiting to start chemo. Seeing the oncologist on Wed and will ask for drastic reduction of anti anxiety meds surrounding ac treatment. Also spent a whold day in bed when I did not understand I was supposed to take compazine as needed(did not recognize generic name), thought I was following directions(every 6 hrs) for some pill I had to take. Yikes, the newly treated are like babes in the woods with this stuff, Keep the faith! Learn from my errors, it will help....
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Diagnosed 9/2011 at 58 TNBC node neg lumpectomy chemo X4 AC chemo X12 Tax, rad 30 treatment starting 11/14 all genetic tests negative
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 24 2011 at 2:47pm |
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Hi girls,
I am having my first dose of FEC today... wish me luck! Rondee, have you settled on a plan for your chemo yet? I had the port inserted yesterday and what an unpleasant experience that was. But it is done now and time to move on to the next step. Hope everyone is well, Sandra x
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Allmandy
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Joined: Nov 06 2011 Location: Scotland Status: Offline Points: 23 |
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Posted: Nov 24 2011 at 4:47pm |
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Hope the FEC went okay. Don't forget drink lots of water to flush it through. The more you drink the easier it seems. A week on and I'm feeling great again! If it all seems to hard to swallow try sucking on a ginger nut. The good thing is that unlike pregnancy morning sickness you know it won't last long, so you can get through this.
Mandy
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 25 2011 at 4:00pm |
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Hi Mandy,
treatment was fine. No problems at all. But I was given 4 different types of nausea meds. I always drink at least 2 litres of water a day, so getting through that was no problem and as soon as I got home I took my dogs on their daily 5km walk. So I guess the exercise and fluids made a big difference for me. I know I might not get off so easily next time, but I am certainly encouraged by the minimal side effects of this time. Sandra xo
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Nov 25 2011 at 5:04pm |
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Hi Sandra,
Great to hear your first FEC went so well. Sounds like what is a marathon for many (not all) may be a walk in the park.....or a walk with your dogs....for you. I tend to be a cautious person.....so, hope you will be really good to your self in between doses....... get some extra rest, do not push yourself, IF (and you probably won't) you get the least feeling of nausea, take your PRN anti-nausea meds.......once you have walked thru your first post dose weeks you will know what your body needs between doses. Since you always drink at least 2 liters of water a day, no one needs to remind you of the importance of fluids for sure! You are such a positive and knowledgeable person. With caring and positive thoughts, Grateful for today................Judy |
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AnnMF
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Joined: Nov 23 2011 Location: Dalby,Australia Status: Offline Points: 8 |
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Posted: Nov 25 2011 at 8:04pm |
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Hi Sandra
Glad all went well for you yesterday. fingers crossed and best of luck with it all. one thing i found helpful if the tummy was feeling a little of was weak ginger cordial, and also hot lemon and honey drinks in place of my morning coffee's, and sometimes i'd put a little ginger in that as well.
Reading through your posts we have a lot in common with regards how this thing has presented.
Will keep in touch.
This is a wonderful site full of beatiful people i haven't been able to find anything with as much info or anything that even comes close.
cheers and best wishes
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DX 14/12/10 TNBC Invasive ductcarcinoma,Stg 2B,gr3, Tumour 22mm+8mm to 4x satellite nodes,lumpectomy 6/1/11-axilla 1.8cm, 3+/16 nodes, chemo FECx 3 and docetaxelx 3, rad x30 end 19/9/11.
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