Starting Chemo in Nov. 2011...anyone else?
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dtholden,
When I read your post (I am a brand new forum member here), I thought I was reading my own story. I started chemo back in Nov 4th 2011. I also did 4 rounds of A/C and 4 rounds of Taxol. I am triple negative as well and was diagnosed at stage 3. So now is March 19th, and I had a lumpectomy a week ago. I just got the path report back, and I don't have clear margins on 2 sides, for the tumor that was in my breast. My nodes are now clear though...which is kind of funny bc they were actually the more concerning issue in the beginning bc of their size, and how many there were.
So I thought I was going to have a complete pathological response to all this bc the onc and surgeon couldn't feel anything, and my MRI looked really clean pre-surgery. So now, we found out that the chemo didn't get the tumor in my breast since there was still a 2cm mass there and my margins were less than 1mm clear. Ugh!!!
So now I'm like what should I do? We meet with the surgeon tomorrow, and really, I'm thinking of having a double mastectomy, even though the evidence shows that there isn't too much benefit from doing that because of the high recurrance rate in our kind of cancer in terms of matasteses. But I am only 41 and have 2 small children, and I think I need to do whatever I can to eliminate cancer cells in my body...even if its overkill. I am so torn about this....have you any thoughts regarding this? Anyone??
Thanks,
Brenda
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bahamamom, The fact that he is hiding this from you is big red flag. In your post you called it "this threat to my 39 year marriage". Even if he claims this is harmless, it obviously isn't, because it has already caused harm to you. You feel it is a threat. The fact that this is hurting you, should be enough for him to stop e-mailing her. Part of your fight against cancer depends on your emotional, and state of mind. So to help you fight this cancer he should be willing to give up this "friendship", to help you have peace of mind. You said "Throughout my treatments, he has been very attentive and has gone to every single treatment with me". So I feel if he wants to continue to support you in this battle, he should want to help you to feel calm, and secure, and stop doing something that is causing you harm. This is just my opinion.
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Yes to Grandma V's post re: bahamamom. If he feels the need to hide it, it isn't right no matter how "harmless" he may thnk it is.
Right now your fight is for yourself. I wonder if he's trying to relive some easier (a time he thought was "easier") time in his past to escape from the present. But your fight will be done soon, and he'll have caused perhaps permanent damage to a relationship and to someone he obviously cares about (you).
I am in no way condoning his behavior. Many men are overwhelmed when they can't fix something and simply want to run away. He's taking such a risk. He needs to know that, from you.
Good luck we are here for you no matter what.
Claire
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Brenda, A lot of women choose double mastectomies. I thought about doing that myself and almost did it, but ultimately chose a lumpectomy. If you go the lumpectomy route, they usually recommend radiation, too. But have a mastectomy doesn't guarentee that you won't have radiation anyway. It depends on what you can more easily live with. There are days I wish I would have had a mastectomy instead. There is no right or wrong. It's what ever makes you the most comfortable. If you feel have a double mastectomy is right for you, then it is. But if that seems too overwhelming to think about right now, then a lumpectomy is what is right. Everyone is different. There is also reconstruction to consider. Some women who have a double, opt for that, and others don't. Do what feels right for you and your family. We will support you in whatever your decision is.0
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Brenda- none of us can tell you what to do. I am also triple negative. I had a bilateral mx in October with reconstruction. I had 4 A/c and 4 taxol treatments as well. I am starting 6 weeks radiation this week. My tumor was 1.5 cm but I had 1 positive node. Try not to let the triple negative factor into your decision..we have just as much chance of survival as anyone!!! Do what you have to do for yourself. Have your docs made any recommendations???
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I'm sure you must feel devastated, and I hope we can all help in some small way.
I agree that it's not just something that can be ignored. Shoving problems under the rug rarely solves anything.
Like the most of the gals on this forum, I'm certainly not a professional in this area, However, I have also been married for many years (celebrated our 38th anniversary last week). Throughout the years, I've learned (sometimes the hard way) how to approach problems in a better way.
No one likes to be confronted or accused, even when we (they) are guilty. I have found that talking about my feelings and opening up a discussion is a much better way to work on solving the problem. I think it's safe to assume that you want to save your marriage. If so, try to approach your husband in this way. "I know my cancer has been tough on our marriage these past few months, and I feel that we're not a close as we were before . . " Use the "I" word and talk about your feelings rather than using the "you" word and throwing out accusations. Honestly, I don't think I'd even bring up the e-mails unless the other approach doesn't work. Harsh confrontation always seems to bring out the boxing gloves, and he may end up being mad at you when he's really the one that's out of line in your marriage! In this situation, you'd be in trouble for invading his privacy by reading his e-mails. Instead, you could talk about how his rekindling the old relationship makes you feel. You are certainly entitled to your feelings!!
Again, I'm not an expert, but I'm hoping I can help in small way from my past experiences and what has seemed to work for me.
It took a lot of courage on your part to ask for help and share your situation, and I hope you have the strength to get your marriage back on track.
The serenity prayer always works for me in situations like this. "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
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Kellysgroi,
Thanks for your reply! 2 things, I meet with the surgeon tomorrow...so I'll get her input, which I value bc she's nationally regarded in terms of authorities on this. I'm also going to talk to my onc. They both seem to just be more concerned with the distant metastises (sp?) thing more than anything else. I'm guessing she's going to be like, "lets just let radiation kill the rest" and that's it. I have asked her the bilateral mx question previously, and she was like, "you wouldn't gain that much from doing that," and it could still come back on the chest wall. But I'm not convinced that I wouldn't be safer with the double mx.
If I don't do that, I am scheduled to start radiation in a couple weeks, as soon as my incisions heal. I tried to fix my profile, so you can read my diagnosis, but its not really allowing me to to that....what am I not doing to have that be at the bottom of my posts?
Anway....my diagnosis was on 10-29-2011, triple neg, grade 3, stage III, IDC, 3 pos. nodes, 4cm & 5cm tumors in axilla, and 3.5cm tumor in breast.
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Thanks to all of you who responded to my post about my husband having an email relationship with his old "friend". I am not big on confrontations and really probably only had the courage to talk with him because of all your encouraging words today. I thank you all so much for that. Also, I would never dare say to him things like, How dare you do this to me when I am bald, have fingernails falling off, have gained 12 pounds, and am just now beginning to feel anywhere near normal, because I would never want him to stay with me because I am "sick", but it was very comforting for all of you to acknowledge that this was a hard time for me. He says that he did tell me about the emailing, and he is right about that. It is just that when he told me he had heard from her, I thought it would just be one or two emails to update each other on lives, families, etc. I didn't realize he was going to be writing back and forth with her so much. And I certainly still don't see how he thinks he was open and honest with me about it when I clearly saw him trying to hide the email he was writing when I was in the same room. He says that I have always had his email password and that anytime I want to, I can look at the emails. He does not know that I already looked at them. Clearly, he sees it as 2 old friends catching up, and he promises that he had no intentions of trying to have an affair with her. He reminds me that he told me when he first said they had emailed each other that she is confined to a wheelchair and has MS. He did say that he is very sorry he hurt me, will stop communicating with her immediately, and that he hopes I can forgive him. However, I really get the impression that he doesn't seem to understand how wrong what he did was. I tried to tell him that I wasn't accusing him of sleeping with her at this point, but that this is how affairs start. I also told him that 7 of you responded to my post, and that every single one of you thought the situation was trouble. I think we can work through this, but I am hurt and will be for a long time. I feel like I have lost something. Besides the fact that it has never even occurred to me that there would ever be a "third party" in our marriage, we are both expecting to retire soon, and I had thought we would just sit on our porch and drink coffee and watch our grandchildren playing in the yard when we weren't traveling.
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Bahamamom---I am so glad you talked to your husband about what was going on and your feelings about it. It is very important to be open and honest with each other. I tell my husband when he hurts my feelings. He doesn't even know he has done something. I too was suspicious about my husband but he shows me everything he does. I feel fat and so ugly lately and I need his reassurance. I cry a lot more now. You will be able to let go of the hurt eventually. All of these things take time. Hugs to you and I am so sorry you have to deal with this on top of everything else!
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Bahamamom, I am SO PROUD of you for talking to him and it sounds like you handled it beautifully. I didn't see all this til now, but will keep you in my prayers. It is such a tough time in so many ways, but it is never healthy for a man to seek friendship or consolation from a woman when married, and that goes for the other way around too! It's just not wise or healthy. Even if nothing is 'happening' and maybe he is an encouragement to her too, given her health situation, he could and should pull you into it and keep everything above board...just smacks of something he shouldn't be doing. I hope you can let go of the hurt, and move on, though it will take time. Stay strong...nails grow back, and pounds come off...trust is hard to earn and hold on to at times and I hope the trust can be restored for your marriage. It is worth the hard work!
waxgirl2000, there are so many factors that go into decisions of this magnitude. My type of cancer often jumps to the other breast and was found throughout my entire right breast with 6 nodes. Original tumor was almost 6 cm with 4 other spots found...so I don't regret my BI Mx at all. But I had a cancer that moves...I don't know what yours is or the rate of recurrance. Find out how often you will be followed also. I was going to be tested and watched every three months for years. (I'm 51), and that is not a way to get beyond this either. Eager to hear your decision! I've heard so many stories so many way, and echo GrandmaV...we will support you and cheer you on no matter what your decision.
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bahamamom3:
You did the right thing in shutting your husbands behavior off. I had a relative in her 60's who met up with a 5th grade love via the internet and ended up e-mailing him (and vise versa). Eventually, they met up, had an affair and are now married. His poor wife of 40 plus years had no clue. You have the right to tell him to stop it before it controls him and your marriage. Men are pretty pathetic- They don't always think until it is too late.
God knows how hard marriage is- You haven't been married all these years to let it go. This women doesn't need to be your husband's friend or confidante- that's why he has you. Don't second guess your position on this- after all you have a lot of blood, sweat and tears in your marriage as do I. No women is coming between me and my husband without a fight.
Keep strong,
Susan
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bahamamom, I just want to chime in with Beth, Andimom, and Susan, you handled that beautifully. Like they said, it will take some time before you can trust him again, but it sounds like he was sincere about stopping the communication.
lots of hugs
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Susan, how are you? It was good to hear from you.0
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bahamamom, YAY for you! you were so strong and brave to confront this problem and get some answers. i don't think i could have faced it with such grace. i hope things improve quickly and that you get your trust back, although i know it will be hard. it's so awesome that you came here and got the support you needed. i'm thinking about you.0
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Waxgirl: I too am a TN...I opted for a BMX - I had seen too many of the TN's on this site with multiple DX's...started with 1 lumpectomy, then another, etc... I knew that if I could take even some of the potential for a recurrence (or more procedures) the girls were gone. I know it could come back local but in my case it is unlikely...we are all subject to mets no matter our diagnosis or treatment!
Couple of things to note - while I don't currently love my TE's I know that once I have the implants I'll be good and I am just vain enough to care about that and not spend my life covering holes in my chest (PLEASE this is not intended to be an insult to those who've had a lumpectomy - placement is also a huge issue - as it was I had to get a 2nd surgery to receive clear margins - minor but still)...I also knew that I didn't want radiation. I had a Dad, cousin and co-worker that went through that and it just didn't fit in my life. AGAIN - these are very PERSONAL reasons for MY decision.
There is no right or wrong for the mass - just a right for you!
My surgeon truly did not make a recommendation but merely laid out the options and what each could/would likely entail. She did discuss TN and gave me some information. But my sister actually did most of the research and came to me and said "Get rid of them...you just had to be the best again and get the highest GRADE you could..." this all done and said through laughter and tears...she is 5 yrs younger and was with me when the doctor said the big C word..my bestie!!!
Good luck to you...and please come back and share your decision!
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naan1004:- Tooo funny! I just kove Ormie the Pig
Hugs,
Rose
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HI Bahamamom,
It will take some time to build trust back; actions speak louder than words. It sounds like he is moving in the right direction and he proved that by saying he would stop communicating with her. He needs to know how emotional this journey is for all of us and that you need him to be on YOUR side-and it didn't feel like he was (from your perspective). Trust will be built back, but it will take time, as long as he makes good on his promise.
RE: BMX discussion: I am going to have one following rads, with immediate reconstruction. I have to wait 8 months for my skin to recover. I've already had a lumpectomy with clear margins but with my lymph node involvement and my type of BC--it's ILC, higher tendency to be multi-focal, hard to detect on mammos, likes to hide from them and US's too...I want to know I did everything I could to protect myself.
Hugs,
Claire
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Rose, glad u enjoyed it, poor piggy!
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Beth, Andimon, Susan, Claire, Grandma, and YaYa - I really appreciate all your advice and support as I try to work this out with my husband. I am glad that I talked to him about it. Some good things have come of it. For instance, during some of our talking, he said that we don't talk to each other, and he is right about that. We do need to talk more, and that is something I want to work on with him. I do believe he is sincere about stopping the communication, and he has apologized and said he never meant to hurt me. But when I got home from work this afternoon and asked him how he felt today, thinking, of course, that he would tell me that he felt terrible for putting me through all this, he said instead that he felt "pissed off". Since he has never really thought he did anything all that wrong by emailing an old friend, I thought it was important that he see this from my point of view. He said he was hurt that I had told him I didn't know if I could ever trust him again, and I told him that what he was doing with emailing her often ended with meetings, then affairs. He thinks I should have trusted him to just write to her, nothing more and kept stressing that she had MS and damage to both her brain and body and so no physical relationship would have even been possible. I was shocked and appalled at that response, so now I am angry all over again.
On a brighter note, I have the tiniest little hairs all over my head! I thought they would never show up. It is so hot and we haven't turned on the air yet, so when I get home, I just take off my wig and go topless. It feels so good, much better than the freezing cold when I had no headgear on in the winter months.
Here is a laugh for everyone. Last Friday, I couldn't help notice so many teachers were wearing their new spring dresses instead of the pants and sweaters we have all been wearing for the last several months. Jokingly, I commented to the librarian that I was going to have to wear my dresses while I still didn't have to shave my legs. I shared that story with the ladies giving me the radiation treatment today.
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GrandmaV:
Thank you for your post. I am doing good- I am done with chemo. I had my second reconstruction surgery last week. So now it's the wait and see game. I hope you are doing well. I kinda lost track of this post recently. I have had a lot of out of town company, working full-time and trying to adjust to Tamoxifen which made me extremely depressed to the point of feeling out of control and desperate. Luckily, I have adjusted to the medicine and feel better mentally.
Susan
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Bahamamom-- I am sorry I didn't see your post earlier.
People do the craziest things when they are under stress, have fear, feel incompetent etc. I am sure that your husband- as the rest of us- is not exempt from that. I always believe that something good CAN come out of everything IF we look for it. I hope that you both do.
Q
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Susan, that depression is a terrible thing to have to experience. I'm glad to hear you're adjusting to Tamoxifen and are doing better. Was that your last surgery? I'm doing ok. I'm almost done with rads (3 boosts left) and then I will start on Femara and still have herceptin every 3 weeks until November. I hope you continue to adjust to Tamoxifen and can take it without SEs.
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Claire: Big decision off your shoulders:) I feel the same way about doing everything I can to protect myself. I will be done with Taxol on April 10th, then on to rads after a 3 or 4 week break.
Bahamamom: Talking while feeling angry is very challenging and difficult. Sorry you have to deal with this!
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bahamamom, do NOT let him be the victim here. i don't care if she's confined to her bed and has to type with her teeth ... the point is that it hurt you. period. don't let him put blame back on you. that's my opinion and i feel strongly about it, but it's just an opinion.
susan, depression is the worst. i'm so glad you are getting some relief.
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Ladies - I NEED HELP!!
Funny I joined BCO right after DX but didn't post anything until this last week. I have been reading the posts regularly though!
I am just shy of 9 wks since last chemo (1/19).. and I have one SE that is a problem. I had swelling in my feet/ankles after #2 and #3 and while uncomfortable it came and went...then after #4 it came and didn't go away...well actually my right side is more normal now but my left side is bad! I sleep every night with feet/legs elevated with wedge pillow and while this helps some it is NEVER GONE and it starts growing the minute my feet gingerly hit the floor..I saw the MO on March 6th got a doppler (no clots - thank god) but offered no other thoughts except for "maybe your Primary doctor could do something." SERIOUSLY??? Well today I saw my endocronologist (I am an insulin dependent diabetic) rather than my primary as I thought my endo might have better insight - he did another doppler (still no clots) and I am hoping when I talk with him tomorrow (it was late when all done) that he has another idea... but I would like to know if anyone else has experienced this or has any thoughts or recommendations??? (other than getting a new MO...) It is so bad that I only have a few pairs of pants I can wear and ONE pair of slip on shoes..It is in my calf, ankle and foot and is painful....SO READY TO MOVE FORWARD (and to walk/exercise) and this is really troublesome!!!
I also posted in Dec 2011 to see if anyone there has any ideas... Again any thoughts would be greatly appreciated!
I have thoroughly enjoyed reading your posts (good or bad - it is all just part of the road we must travel)!
Bahamamom: It may be a roller coaster for a bit (like you need another one) but as several have already stated - people do odd things when faced with the BC stress (we all know men get weird when they can't "FIX" something) but DO NOT let him turn it back on you!
Michelle
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Michelle-I really don't have any similar symptoms or knowledge that will hellp you, but I wanted to tell you that something definiitely is not right about that much swelling. I will say that I have read that after chemo, you may continue to lose some of the extra fluid that it caused you to have over a long period of time, sounded like months even. I was shocked to find that after about 5 weeks after I finished taxotere/cytoxin, I got up the nerve to get on the scales and had lost 2.5 pounds. I was pretty surprised because I didn't feel like I had been eating less. Then a week later, another 2.5 pounds. So my guess is that those pounds were from fluid. I was just glad to lose some for a change after gaining about 16 pounds during the 3 months of treatment. So I am thinking that maybe you just are retaining fluid in those areas. I too have a few other kinds of health issues I have dealt with during this journey that I probably needed to go to my primary care doctor about, but since I was already seeing a doctor so often and felt that my primary doctor would have just listened, then put it all back on the cancer, I just didn't know what to do. Even now my blood pressure is still running pretty high and I am developing some type of under the skin blood spotting on my hand (BC side), and I am wondering how I will fit in getting to the primary when I am already being seen by my radiation doctor weekly and having daily treatments there. I guess I am also putting it off because I am not looking forward to having to go to one more doctor. Anyway, if I were you, I would continue to follow up with the doctors about this because swelling in your legs is always something that needs to be treated. I am wondering how your blood pressure is. Good luck, and I hope you get some answers quick.
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Morning all,
Bahamama - YaYa5 is right . Do not alow him to be the victim, you don't have to be either. But emotional infidelity can be almost or more damaging I htink. Keep talking sounds like you are onthe right track. This is the last thing you need on your plate. And her having MS does not in anyway jsutify it. Don't let him make it a competion.
I am 5 days out from my first A/C treatment. Stomach was way off until yesteday,then felt great. This AM off again. But have lots of meds and gingerale in the house and it is not so bad that I can't work. I am also fortunate somedays I go tot the office and somedays from home.Today is a home day - hence the boards (LOL) I guess it willjust go up and down. The nighttime hot flashses are the worst and having been thru meneopause I thouhgt I was going to be OK with this portion.OMG NO.
My H is still here follwoing his heart attack just before my surgery. It is getting to be time for himto move back to his place and live "independently" again. He is doing better, but not great. Alot of the frustrations that caused the seperation are coming back (how can you tell I feel better) so time to move on befofe I go back to angry resentful me. Don't like that me and don't have the time for it.
Wishing everyone a gentle day
Nel
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Hi Bahamamom,
Your hubby's response sounds like misdirected anger. I think he's really mad (ashamed) at himself for being so insensitive--how would he feel if you were hiding an email from him? Anyway, his shame is strong enough that he's defensive about his actions. So he turned it on you as a deflection of his own strong emotion about all this.
I expect after the high emotion dies down--you'll both be okay and together. Perhaps it might be good to go silent on what happened, now, for a bit...I'm not trying to trivialize your feelings at all...but let it go for now. If he means what he says--no more contact--it should be in the past, and now the trust-rebuilding begins.
But-I maintain that if anyone ever feels the need to hide ANYTHING--they know what they are doing isn't right.
It will be okay soon!
Claire
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hale0811, Are you on a diuretic? If not, one of your doctors may consider putting you on one. . You may need your heart tested to see if there was any kind of damage from the chemo or even from the diabetes. Your doctor may tell you to get ted hose (which you can buy at most any pharmacy)they could help a lot. If your endocrinologist doesn't suggest this, I would certainly ask about it, or go to your primary doctor. In the mean time there are some foods you can eat that will help with water retention and some foods to avoid, I found this list:
I hope your endocrinologist will take care of this, if not then I think you may need to go to your primary care doctor.
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naan, I just now watched Ormie. Thanks for the laugh.
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