TRIPLE POSITIVE GROUP
Comments
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Elaine- thanks so much for your post! You sound so upbeat! I needed to read that! I am scheduled for a lumpectomy on the 28th and it's what all 3 of my doctors suggest- I think I'm just getting nervous as the day gets closer. Thanks again
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Good luck with your lumpectomy! I hope you don't have any complications. I went back to work (half a day) the day after surgery, and that wasn't the brightest thing I've ever done. I had a drain, and I didn't realize that the more you move around, the harder it is to reduce the flow to the drain. It took me three weeks to have that sucker removed! Hopefully, you won't need a drain, and you can get back to life quicker.
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deni1661, thank you for your reply, I know exactly what you mean, whenever my mom cried I just felt guilty and helpless, whenever I cry right now and my kids see it I feel guilty, there is no easy way out of it. And no use complaining either, it did happen to us, no other family but us and we have to deal with it. I want to act normal and keep daily routine ad close to normal as possible, some people manage it, I am, as you said, struggling, I cannot follow to some activities, I stay mostly at home, it is my fault I know, I am waiting when the quantity finely turned to quality and we will find a new normal and I will become more stable and stronger. It takes time, I am complaining here and to my counsels, ni other outlet, but very thankful for what I got. For any piece of advice or kind words.Cherry
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emily_mh, I could not opt for mastectomy, my clinic does breast-preserving surgery if possible. In terms of survival mastectomy is equal to lumpectomy+radiation. Even if you remove the breasts there will be still some tissue left. My tumor for example was located above the breast, almost on the same lever as the armpit. I also red that breast glands can be found up to your clavicle and even towards your back. But I understand those who choose the mastectomy for the peace of mind but this is major multiple surgeries compared to lumpectomy. I am awaiting the results from genetic testing, if I test positive I will try to pursuade my oncologist and the surgeon for mastectomy but majority of those who test positive for the genes do not get bc according to my BS Cherry
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cherry, thank you for your post, I keep telling myself the same thing, there will still be breast tissue left even after a mastectomy. And I agree with Elaine, that I can always do a mastectomy later. I really am at peace with my decision(mostly) it's just a gamble I have to be ok with.
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emily_mh, good luck
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3 days post op. Just realized my upper arm is numb. I've been keeping ice on the incision (which is almost in my armpit) so I thought that was the cause, but it is not. Anybody else have that happen? I assume that will go away eventually?
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meowmmy - your arm numbness is common and should gradually resume some, or all, feeling, but be patient as it can take a while. You may feel a pins and needles sensation as those nerves regenerate, this is normal too. I found that wearing something with a sleeve made that sensation better - skin to fabric was better than skin on skin.
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I had a lumpectomy on 10/20 , after my oncologist said everything was gone and my breast surgeon did a breast mri that came back clear. 1 week later my breast surgeon called when the pathology came back without clear margins, there was def still cancer present. The did not even suggest radiation, just a mastectomy now. I had to make appointments last week to see a Deip flap reconstruction dr and an implant dr. They say I won’t need any radiation after but I hardly trust that answer now. I have surgery now scheduled for 11/17 but my insurance called on Friday and said that the dr I chose ( deip flap) is not going to be covered by my insurance- when tne drs office assured me they would be- so now I have to find a new plastic surgeon and I’m not going to postpone surgery. If I have to have no reconstruction at this time I’ll have to do it later when I find a new plastc surgeon.
I am opting for a double mastectomy after all of thIs.
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Thanks SpecialK. Why don't they warn us about the after effects of all these procedures? If I hadn't read about what to expect in forums like this, the healing process would be more worrisome. The blue poop probably would have scared me!
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I am also experiencing SE’s...just not sure from what? Herceptin or Anastrozole? I feel like an 80year old woman ☹️ I now have knee pain ( unrelated to an injury) that I never had before. It gets worse with exercise. Also the joints in my hands ache, worse in the morning. My previous neck arthritis is much worse since I’ve started meds. I tried Celebrex but had a face swelling reaction...and now Advil but it only helps my new headaches. Still dealing with a large hardened sore seroma which I thought my body would reabsorb and lymphedema. Quite frankly, all of these extra side effects add to the struggle of recovery. I feel so frustrated when I tell those who ask how I am doing now that I am doing well when the truth is...I am trying to manage this new difficult reality daily.
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LTWJ- I'm sorry to hear you did not have clear margins. I'm glad you have a plan and will go through with double mastectomy and figure out reconstructionlater.
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Emily, if I were in a position to have a lumpectomy again, I probably would have. I had one 18 years ago and for 18 years was fine. If lumpectomy didn't require radiation it would have been ideal. I am now sorry 18 years later that I had a lumpectomy back when I did because I was diagnosed with a new cancer and my skin is not as elastic on the side that was radiated. If I went for the Flap surgery that would have been better but it required a longer recovery time and I just can't be out of work that long. So I am doing tissue expanders and it is not comfortable at all. Lumpectomy, I was off the table and raring to go after surgery. Not sure how large your breasts are right now, but a 4 cm tumor and margins...just want you to be happy with the results. My tumor and breasts were small so my bad breast was only a tiny bit smaller than my other one back then.
LTWJ - so sorry you did not have clear margins. I am glad as well that you have opted for double mastectomy. In my head, I felt, just get it over with an take them both. Wishing you well with your upcoming surgery.
Deni...I will not over do it when I go back to work
I hear you on that for sure. -
Jagger - I'm guessing your "arthritis" type symptoms are AI's. At least it was for me. I did fine when it was just herceptin. 6 months into AI's, I take claritin and extra strength tylenol routinely. Have continued the Calcium with vitamin D and Chrondosen and Glocesimine (know I'm not spelling either right but the spell check isn't helping me.) that I did for my arthritis before. My pain is manageable with the above. My goal is 2 "stretch and flex" classes and 18 holes of golf a week and at least one walk a day with our terrier. If you haven't found the AI thread on this site, I suggest you check it out.
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cherry - sending hugs across the pond. We're here for you all the way. Better days are ahead, I promise
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emily_mh, I had to have a mastectomy because I had two tumors far apart on my small breast plus enhancements on the outer quadrant. My BS didn't want to take a chance that any cancer cells would be left behind to get into the lymph system. Both my BS and MO said for me, a lumpectomy would raise the risk of recurrence significantly because so much of the breast was affected. I think the doctors aim to preserve the breast whenever possible so if lumpectomy is an option, they are in favor. I also think the recommendation is different if there is lymph node involvement. There is so much to consider when making the decision so don't be afraid to ask lots of questions. Good luck with your decision.
LTWJ - I am so sorry your margins were not clear and you now have to go back for a mastectomy. I don't blame you for not feeling confident with the answers you are getting, the whole situation is disappointing. I don't understand why your insurance won't cover the DIEP because it is a reconstruction option, not cosmetic. Mine was covered without question and my PS is out of network. I think for peace of mind it's good that you're going ahead with the mastectomy now which will allow you time to find a PS that is covered by your insurance. Best wishes for your upcoming surgery and finding a new PS
Jagger - my guess it's the Anastrozole causing your pain. I had terrible pain on Arimidix and could barely function. I tried to keep exercising thinking that would help but it didn't. My MO switched me to Letrazole and while I still have muscle aches, it is nothing compared to Arimidix. Maybe your doctor can switch you to another AI? Have you tried PT for the seroma and lymphedema? I had some relief when I was doing PT and my therapist taught me a number of exercises that really helped. I have found most people think I'm "all done with cancer" when like you said, the SEs are another challenge we need to work through. I hope you find relief to your pain soon. -
dni1661, insurance will cover the deip flap surgery, just not the plastic surgeon that I was referred to by my breast surgeon. They swear they are the only ps in tne area that perform the procedure but the insurance company says there are others. They’re all still hashing it out they tell me.
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GingerChi, thank you for your update and please keep posting your experience, there are people on this thread who are considering starting nerlynx.
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Thank you deni1661
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Meowmy, I have numbness and sometimes even feel sore under my arm where my nodes were removed. Not below the armpit but in the arm itself where biceps was supposed or used to be before so to speak. My oncologist says it is because of surgery and it will ho away. As ss my physical condition is concerned I have to admit I lost my muscle tightness very quickly now when I am not running or exercising the way I used too. Cherry
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LTWJ, I don't know your insurance but many BC patients are assigned a "case manager" to navigate the insurance system and their health care. Ask for one and see if they can help you. Ask the PS you want if he/she will accept whatever your insurance pays. I was allowed to go out of my insurance's network for my PS. My case manager made that happen.
As Deni1661 wrote, going ahead can you "peace of mind" since your margins were not clear. You know you are doing all you can to eliminate the cancer. It is still crappy.
Emily, my Surgeon offered to take as much as he could and "save" my breast. He also told me he could never look me in the eye and say he got all the cancer. When cancer was found in the other breast, the decision for the mastecomies became easier (not easy but easier). This is a tough decision. I will keep you in my prayers for peace with your decision. For me, I eventually got to the peace point. I have never looked back and question this decision. Today, I love my new breasts. They are so much pretty than the original ones!
Everyone, DH and I had a wonderful mini vacation. I will post a picture later!
Vicky
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I think I am caught up on all the 3+ posts.
I found this quote on another site:
"They broke the wrong parts of me... They broke my wings, and forgot I had claws..."
This sums up the strength of a Triple Positive Woman.
Vicky
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Vicky, so glad you had an awesome mini vacay. I absolutely love the quote you found as well. You gotta have claws for sure.
Your love of your new boobs keep me focused. I hope to echo your feelings a year from now. xo
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thank you for your posts Kim, Vicky and Demi and for your prayers. Vicky I love your quote
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For those of you considering mastectomy ...
I posted about this a long time ago and I realize we have new members that might have missed that previous post.
Early on I talked with another survivor. She said I could ask her anything. I asked if there was anything she regretted. She said she wished she had made pretty pictures of her breasts. She said she had medical pictures but nothing pretty.
I called the photographer that does head shots for our business. She agreed to make the pictures. Just so you know, I had never done anything like this and I thought it would be awkward. It wasn't. My DH picked the pictures and put them away. I have looked twice.
The first time my Plastic Surgeon examined me, I stated that I wanted to be at least a D cup when this was over. He said (and I quote), "Aesthetially, I find your breast too large for your physique."
Well, the first time I looked at those pictures ... he was right. They were not that attractive. They were mine, however.
I would encourage anyone considering a mastectomy to make pretty pictures. You never have to look at them but if you want to, you can.
I believe having the pictures helped me realize that what I had wasn't that great (and of course they were cancerous). It helped put into perspective my reconstruction.
Vicky
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coachvicky, always love your posts, whatever you post, just love it, you always make me smile. Love the quote. Sounds like Game of Thrones. Glad to hear your vacation was great.
I can understand you about the breasts, I actually have the pictures, back in 2004 in our thirties my husband and I did some pictures, I looked at them yesterday when I could not sleep after the infusion, keep them in my drawer in the bedroom, in fear if some of kids may find them. I wanted to see whether they were perkier or any different. I was slimmer then and they did looked better compared to how they do now. Now they are large boobs, too large for my frame, quite saggy, I have to lose weight and this thought of not knowing what is going on there is overwhelming but I also hear what ElaineTherese said, once they gone they are gone and my scar is not even in the breast so I am keeping those unless the genetic testing comes positive.
I have decided to go on with three infusions EC, had another chat with this famous professor today and told him that I will try to go through all three because he said that I will not benefit from only one, three is the minimum but even two is better than one. He is the most prominent in his field, his opinion was important to me. I understand it is not on the same scale as you have in US, Sweden being small but still has the same level of standard care, he is the best we got and if he would have told me: trust me you do not have to worry, paklitaxel is more than enough for you, I would have not agreed to do it. But he did not, he said that no one can give any guarantees, and even though he thinks I may not need anything else, he still can see how adding an anthracycline can give us both some peace of mind. Something like that, I am doing it, two more months of chemo, I must be crazy. The peach fuzz on my head will be gone again, and I will lose my eyebrows and eyelashes, they remained intact until now, but I am doing it. That and the bone scan, please keep me in your thoughts, I am very very scared.
On the bright side, I cooked my first New Orleans gumbo today, it turned out very well, we all liked it, I will be cooking it again soon. I started to cook American cuisine, this is also a silver lining to me.
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Jagger - I feel exactly the same way. I had my last Herceptin infusion on Friday. The joint pain started about 3 months ago. My joints in the fingers ache only when I first get up in the morning. My wrist and thumb joints ache throughout the day. My legs are very weak when I first roll out of bed. I feel like I have arthritis and I'm only 51 years old. I started taking Tamoxifen in February. I suppose it could be a combination of the Herceptin & Tamoxifen.
SpecialK mentioned a while ago that slowing the Herceptin infusion down to 90 minutes can help with the side effects. I kind of wish I had followed that advise 3 months ago, but I just wanted to get the infusions over with. I asked my nurse if Herceptin was the culprit. She said that a lot of patients complain about the joint pain towards they end of this treatment. She felt it was the Herceptin. I don't know anymore. All I know is that I have no more infusions. Just another 4+ years of Tamoxifen. Yay!
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I don't post here often but coach I love you what said about the picture thing. I actually did that and my story is opposite. My surgeon told me with my size and frame he'd go bigger. Yay me. So i was a saggy A-b cup before , but after nursing 2 kids. Before kids I was a C. So my finished size will be a very full C. He told me I deserve what I want after this.
So like you i took my pictures out and looked at them, then I have a friend who works on computers and does designs, she scanned my picture in and did some fun scale thing. I loved it.
I am currently done with everything except herceptin so my waiting game is here for exchange and reconstruction. My PS won't do anything for 9 months after rads.
Hope all you ladies are having a beautiful day
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How cool is that Shelabela! Yes, you do deserve what YOU want!
Vicky
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Cherry ... Great news on the gumbo!
I am happy you decide to move forward with the 3 additional infusions.
Keep looking for the bright things!
Vicky
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