TRIPLE POSITIVE GROUP
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Hi Vicky you always make me smile. In my cancer breast, the tumour was behind the nipple, so my mastectomy did not spare the nipple, but now in my prophylactic mastectomy they tell me that they may be able to keep the nipple. Like you, my nipples always pointed the way, even with a padded bra. I thought that the reconstructed nipple would not point and that I would have only one pointing...which doesnt bother me. If David Bowie had eyes of different color (one blue one black) I can have a pointing nipple and a non-pointing nipple. Like you I dont care anymore! I didnt even think of nipple reconstruction, assuming I would just get a tattoo -I need to start thinking about it.
This was an unexpected and quick decision upon discussing the reconstruction with my oncologist and plastic surgeon and I am very relieved by it. In the event I survive this cancer I dont want to have to deal with a new primary in the other breast.
hapa, just wanted to say hi. Did you make the decision on your radiation treatment? Is there any difference in the treatments you would receive locally vs MDA? This breast cancer thing is extremely regimented and the last thing you want is to make the effort to travel to end up getting the same intensity of X rays (or proton beams or whatever) in the same exact area, from the same machine that you would at home. The radiologist would not administer any part of your radiotherapy treatment, it will be the technicians and the machine.
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tres- look at your cute self! I agree, you look good bald! I looked like Gollum!
laughinggull - hi to you too! I also elected a bi-lateral mastectomy and even though I had surgical complications I would make the same decision today. My prophylactic breast wasn't so much - I had both ALH and ADH cooking in there undetected and I am convinced it would have only been a matter of time until I was dealing with another diagnosis. My cancer breast had 2.6cm of IDC and two positive nodes, but also DCIS that was not only in the ducts but also in the lobules, so both really needed to go. I also have the imaging challenges that you do - mammography didn't show either the widespread DCIS or the palpable IDC, and MRI missed the larger positive node. Knowing that I don't image well (TVUS had missed a 3cm pre-malignant mass in my ovary) was one of the reasons behind my decision for BMX - I just couldn't see how I would trust screening imaging going forward when it didn't catch the cancer I already had.
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Ingerp, I only have 5 more herceptin treatments left* and haven't started AIs yet either, but we are talking about and will start soon.
*Will probably only do 4 so I can try to avoid reaching my medical deductible next year - might be wishful thinking but that is where I'm at.
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Phoenix my guess is your MO will be fine with you skipping the last one, particularly with the research out suggesting six months total is as good as 12.
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Suburbs - darn that stupid infection. I pray the surgery will bring the final healing you need to move forward. You have certainly had a tough two years but have handled everything with amazing positivity!
Eily333 - absolutely get a second opinion! A confident doctor will welcome another opinion. My original MO gave me only one option and wasn’t receptive to my inquiries about other treatment choices and statistics. I just didn’t have a good feeling about her. I went for a second opinion and couldn’t be happier with my entire medical team. I trust them completely and they treat me as an individual with unique needs rather than someone on an assembly line. I pray you find the same peace of mind with your next consultation.
Ingerp - congrats on finishing rads!
Eyelashes and brows - mine come and go. Vicky, thanks for the brow suggestion I will give it a try.
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thank you deni1661 for your encouragement about another opinion. I havent heard from the Dr I have asked to give methe second opinion yet...but I have been told its in the works.
Next week i will be due to see my current Dr so it will be interesting as to what she will say to me in person...
Thanks again.
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Angelsgal57 here wondering if anyone else feels a bit lost after switching out of the Radiation group and into the next phase of treatment (Hormone Blockers) and not finding many people still chatting. I am considering a switch from Tamoxifen (Horrible leg, foot, toe cramps daily) after only 3 months use to something else (possibly Aromasin).
Cant seem to find any one who has done this also and trying to find folks on Aromasin. Would like to hear their experiences.
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Angelsgal57 I am on aromasin currently. I started last December. I honestly had no side effects with it for 6 months but now have stiff joints if I sit too long, more hot flashes than ive ever had before but their not too bad, and thinning hair especially on top.
I went to an ear nose and throat Dr last month and I have a 30% hearing loss in 1 ear and 20 % in the other. My chemo ended a year ago and the Dr said give all the chemo SE a year. Still have bad neuropathy in my feet
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I urge you to join this discussion on BCO:
- All Topics
- → Forum: Hormonal Therapy - Before, During, and After
- → Topic: Doing Well on Aromatase Inhibitors (AIs)
Topic: Doing Well on Aromatase Inhibitors (AIs)
Forum: Hormonal Therapy - Before, During, and After — Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
These women share a lot of positive information and insights much like the Triple Positive women do.
Please talk with your MO about switching brands of your Rx. Sometimes generic fillers can cause side effects. I was fortunate that my MO believed me and tried 2 generic brands before ensuring my insurance approved the brand name.
Vicky
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had lumpectomy in aug- no radiation- port going in Thursday oct 11,for chemo treatment to start. no cancer found in lymph nodes- wondering about starting chemo if I should. I get very sick even with anesthesia. they state they will be giving me zofron before during and after. but still having anxiety over port and chemo. just finished the book "chris beats cancer" very informative even if one doesn't have cancer, but radical changes. dont know if I could keep that up. and being im triple positive dont know if that would help
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You ask the million dollar question ... to chemo or not.
I ran my numbers for survival with and without chemo just like most everyone else does. The final question was this: How would I feel if I turned down chemo and the cancer return? How would I feel about my husband facing this again? Not me facing cancer again, it is my body but to walk this journey a second time with him as my Caregiver knowing that if I had taken chemo cancer might not have returned would have left me with unbearable guilt. (I have enough guilt on a daily basis so unbearable would be real hard, LOL).
My first Oncologist said after a long discussion to chemo or not chemo, "I don't care if you take chemo or not." He must have been pretty frustrated at me, LOL. My husband asked what happens if she says no. Oncologist replied, "Her cancer will return and when it does she will die." I am not ready to die. I want to go to Ireland, Alaska, return to Germany for the Christmas Markets, visit all the President's Libraries in the US, and move to the beach.
I started chemo that Monday.
That is my decision making process; not yours, Marion. You must decide for yourself.
I encourage you to get a big sheet of paper, make two columns and label one "PROS" and the other "CONS". Put every possible pro & con on this sheet (however strange it may sound) about chemo. Reflect on what you have written and decided. Once you decide, don't look back. Go forward.
The first chemo session is scary. It was a couple of hours of me thinking WTF over and over. At some point I realized chemo was my friend and I would work with it to live. In hindsight it was not that bad for all the sessions that followed. Like the other women on this site, I am stronger than I ever imagined.
BTW, Zofran is my favorite Rx. Never once threw up during chemo. It can help you. My underarm hair never really grew back and that is a chemo blessing to me!
Whatever you decide, no one on this site will judge you or try to change your mind. You will be supported.
I will pray for you.
Love, Vicky
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As always, Coach Vicky gives good advise.
AngelGal -there are several active boards for people on AI's. Not just the one Coach mentioned but also ones for people taking specific hormone blockers. I assume there is one for tamoxifillin (sp?) too but I am too old to visit them. Remember that many of us take more than one over the course of treatment and that what works for one doesn't work for all. I'm much happier on femora than arimidex but others will tell you just the opposite. A good MO will work with you to find the one with the fewest SE's for you.
Marion - no one can make the decision about chemo but you. It isn't fun but for most of us, it's doable. My cancer was also very small with no lymph node involvement. My reading says that taxol and herceptin have been game changers for those of us who are HER2 positive and even though I was only able to do 8 taxol, I am very glad I did. Vicky makes a good point about our loved ones but I selfishly wanted to prevent reoccurrence for me too.
I'm really glad I had a port put in. I'm not an easy stick and they can do your blood draws through the port too. I had mine taken out in February after my 12/13 month mammogram and there is no scar now. I was a little superstitious about taking it out, but MO was so confident that I wouldn't need it again that I had it removed. I do recommend that you wait at least a week between port insertion and first chemo to give it a chance to settle down though.
Don't let anyone rush you into a decision. Get a second opinion if you need it. Whatever you decide, don't look back. We can't redo the past. We have today and hopefully a few more tomorrows.
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That is a great post Taco1946!
Vicky
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Marion--also keep in mind many women do chemo without a port. I did 12 Taxols + Herceptin and am now getting Herceptin every three weeks, all by regular IV. I was happy not to go through the additional surgery and did just fine with no port.
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Hi Marion. I did not have a port but was able to do chemo and radiation andam still doing Herceptin. You face some decisions that only you can make. The doctors and nurses will do all they can to mitigate SE. Just know that we are all happy to share our experiences with you.
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I am halfway through chemo and saw one lady with a port so far. the chemo-room is open, with about 10 chairs. almost everybody gets i. v. in their veins. and I only have one arm to use for i. v. since the other axila was operated on, so no needles.
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I loved my port. I was in the Atempt Trial and had tdm1 for 1 year. Made treatments a breeze.
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I also love my Bard port. I have just started using it but will need it for a year due to targeted therapies. I wouldn’t deal with using my vein.
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I loved my port, finished Herceptin in May 2018, have it flushed every 4-6 weeks. Most of the time I forget its there, MO said keep til next spring unless I really want it removed.
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Hi Ladies,
I haven't been here for awhile because I've been quietly handling my neo-adjuvant chemo infusions, and waiting for surgery. However, today I had a follow-up mammogram and sonogram to see the progress made on the tumor. And quite honestly, I couldn't help but feel discouraged, upset, and have a full emotional breakdown because of the toll this has had on me. My tumor went from being 1.8 cm to 1.3 cm. The one in the lymph node went from 1 cm to 0.8mm. I just finished my 5th out 6 TCHP infusions, and I can't help but feel disappointed because it doesn't feel like a strong response or a big difference. I'm thankful that it's responding to treatment, but I thought response would be stronger. Maybe that's naive of me. Chemotherapy feels like it has taken so much from me, but the actual tumor, and that breaks my heart.
Do most women get their tumor to completely disappear before surgery? For those that didn't see a big shrinkage, how were results after surgery? I'm not sure what questions to ask my surgeon or oncologist since this was just a follow up with the radiologist. Any advice, or help is welcome.
Thank you as always.
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xYoungandScared, did your MO exam you after each infusion? If yes, what did s/he say?
I was under an impression from the forum that many TCHP neo-adjuvant participants have very good responses (my wife also finished the 5th one a week ago and of course we are hoping the same good response!!!). I also saw somes posts saying US may not be accurate, MRI should be reliable. Good luck!
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@LilyCh My MO does exam me after each infusion, and each time, he seemed very happy and positive and said it felt like it was almost shrunken down by 50%- my surgeon also physically felt "almost 50% reduction". To my own touch, it really felt like that too- sometimes more because I lose the tumor, or it just feels so small.
But, I guess it's just a 32% reduction by the calculations of imaging.
I'm hoping it's just US not being as accurate or reliable. But for all the trials and tribulations chemotherapy has put me through, this really feels quite disappointing.
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xYoungandScared, no worries, I saw a few posts saying pathology report wins. Our BS only suggested to do MRI before the surgery. Are you going to do a MRI as well?
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YoungandScared - My mammo and US showed nothing after 5 chemos, MRI showed 1.8cm of non mass enhancement at my tumor site and two cancerous nodes, so not in agreement at all with the US. My surgical path showed 2.1cm of cancer left in the breast with three positive nodes, the biggest being 7mm. Other women on here had MRIs that lit up like a christmas tree after chemo and were found to have PCR at surgery. I also want to add that my original mammo at dx showed nothing but the US showed a 6cm tumor which turned out to be a 3cm tumor and a lot of extremely dense but non-cancerous tissue, the radiologist couldn't make out what was what I guess. I assume at 26 you have extremely dense breasts so it is probably hard for a radiologist to make out the difference between cancerous and non-cancerous tissue in your breast. Anyway, my rambling point is that only at surgery can you know what you're dealing with.
I was not happy that my tumor went from 2.8cm to 2.1cm after six rounds of chemo but even so my MO said a lot of the cancer within the tumor had died, it just didn't die from the outside in, and my risk of recurrence would still be relatively low, maybe 10-15%. Unfortunately, since I had so much cancer and so many nodes affected at surgery, I'm having to do radiation now to get down to that 10-15%, which I'm not happy about. So yeah, worst case scenario, you'll be looking at further treatment to get your risk down if chemo didn't do the trick.
I know how upset you probably are right now and are wondering what this means for your prognosis and treatment plan. Nothing's for sure until surgery is done.
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I had a bard port for a year and was glad that I didn't have to have needle sticks...and for images with contras, it goes through your port which is a piece of cake. And remember you also will have contrast dye for the 4 muga scans which are given to make sure the heart is ok due to herceptin. Each of you have a very personal decision to make about this and I wanted to share a reason to perhaps get a port. The reason is that chemo taken thru your vein can, in some cases, damage your veins--which is something to consider because later you might need to have your veins accessed and it can't be done if your veins are collapsed. Hopefully Special K will look over what I just posted.
I'm not trying to talk anyone into having a port...just presenting something I had read on the board 9 years ago. Each of you know what is best for you.
Oh, and by the way, I couldn't wait to get the damn thing out! Even though it may have protected my veims. I had it taken out several days after I was finished with herceptin. Didnt ask my oncologist and I have so say he was a little surprised that I had done so.
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I'll be honest, I hate my port and most days I want to claw it out with my fingernails. But I got one because when my dad had cancer he refused to get a port and then later down the road, just like Cowgirl13 said, they couldn't access his veins. He eventually had to get a port anyway AND his veins were wrecked. There were times when he was in the hospital and the doctors would have to pick and choose what medications to give him and which ones to stop or skip because the medications couldn't go in the same vein at the same time, but they couldn't get a line in anywhere else (he still had his port at this time). I'm only 42 so I hopefully have many years of needle sticks and blood draws and IVs ahead of me so I figured it was 1 scar vs. a lifetime of misery at the doctors office and possibly some really tough choices should I ever end up in the ICU and needing multiple IVs to keep me alive.
I have a friend who did chemo through an IV and he has a really hard time with blood draws now due to all the scar tissue around his veins. The more they have to hunt around for a vein, the more scar tissue he ends up with, and it just keeps getting worse.
Some people breeze through with no problems though. I just didn't want to end up with trashed veins and have to get a port anyway.
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xyoungandscared, I too had TCHP neoadjuvent chemo. They would not do any scans untiI I completed the 6. The 5th and 6th were the worst for me. I lost 30 lbs over the course of chemo and was literally starving because of the diarrhea. I took so many diff drugs and nothing worked until the 6th where they gave me sandostatin. Then I had an mri and they told me the cancer was gone so i Could have a lumpectomy. Pathology from that came back with plenty of cancer no margins at all so I had to go back for a mastectomy. I was furious as I felt it was a torturous waste of time and I have permanrnt se's from the chemo, neuropathy and hearing loss. I had no lymph nodes involved and never needed radiation. They said I needed chemo because of the her2+ diagdosis. My MO only runs blood tests every 3 months and I'm coming up on 1 year past chemo soon so I'm keeping my fingers crossed. I've met many women these past few months who are 7&8 year survivors with tchp so that gives me hope
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Hi Marion,
I have had a port for over 3 years now and I love my port. I’m a really difficult person to get an IV into. You know you are a difficult IV stick ,when the IV team knows you by name throughout the hospital and infusion unit. Since I also have MS I will keep a port indefinite.For me it’s easier. I get a little perturbed when they don’t use my port. I hate fingersticks. I had the same questions and concerns about receiving chemotherapy. I had a small tumor, my margins and lymph nodes were negative. I was too upset when I was told chemo and Herceptin was needed because I was triple HER2+. The radiologist explained it to me like this; It’s like dropping a glass on the floor and it shatters. Surgery picks up the large pieces of glass. Chemotherapy and radiation helps pick up the small and microscopic pieces of glass you don’t see. So reluctantly I started Taxol and Herceptin a couple of weeks ago. I will have treatment 3 tomorrow. So far it’s ok. Hope this helps
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I'll just chime in to say that I love my port! The surgery to have it put in was a breeze and most of the time I forget it's even there. I bruise really easy and after one round of labs and chemo I looked like I'd been beaten. I scheduled the port surgery right after that and I'm so glad I did! I'm also a hard stick and dehydration makes it even harder for them to get a vein, and unfortunately dehydration is a fact of chemo life it seems. At least it has been for me. And when I need to go in for IV fluids, voila, they just use the port for that too
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LTWJ, I was wondering how could it be possible that both MRI and MO indicated the cancer was gone but Pathology had "plenty of" and "no margins at all"? did MO exam after each TCHP infusion?
My wife's MO said no palpable after the 2nd and could not feel anything after the 3rd and 4th, I was wondering how reliable the examination and MRI would be.
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