TRIPLE POSITIVE GROUP
Comments
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Nora! What happened?
Please share...some of us may be going through the exact same thing right now....
Much love.
t
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Hi Nora! Yes, please share if you are willing and able. Doing this myself right now, trying not to. Originally wanted to wait for the repeat mammogram in August, but not so sure now. Maybe a biopsy now would be better. IDK. Hating this disease.
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Ok I know this is a long story and I'll try to do the condensed version.
Last November when I finished my Herceptin I was expecting to all of a sudden start feeling better. It was strange because I had a few bouts of sore throats since October. A general "yuck" feeling. I just was not feeling better after my Herceptin. I was fatigued, tired and excuse my French but I felt like shit.
Then towards the end of February I started what I thought was my period. I told my ONC last year that would happen but they didn't listen to me. We seem to know our bodies better than anyone don't we? They did a FSH test on me and they said it was perimenopausal. So, I have an appointment scheduled with a GYN doctor to find out what they want to do.
Then mid March I woke up with this weird hurting feeling when I breathed in. It was one of those things that you get that normally if you move around they only last for a minute or two and go away. This did NOT go away. All day long I was stretching, moving around, trying to get the pain to stop whenever I was breathing in. I told myself that if it didn't go away in the morning that I would call my ONC. It was still there in the morning and I called them. They got me in that very same day and did a chest x-ray. They also did blood work. Everything was perfectly fine. The ONC wanted to then do a CT scan of my lungs and pelvis area. (I know I am screwing up some of the dates and time lines but you get the point) She told me to take Tylenol for pain. I told her I was unsure about the CT scan if everything seemed fine on the xray and besides that it wasn't hurting as badly. Then that night promptly at 3am it happened again. I was doing this shallow breathing sort of thing and I scared my husband to death. It hurt so bad when I breathed in. I called my ONC in the morning and said, "Tylenol isn't cutting it, I need something stronger" to which she told me she would order something but in turn I would HAVE to have the CT scan which I did.
The CT scan showed I had 2 new lung nodules, highly suspicious of malignancy and some lymph nodes around the area were swollen as well. I also had a septated uterus, it was enlarged and cysts on my ovaries. I had to have a lung biopsy. It was shown to be "non-diagnostic" (whatever that means) and my ONC said, "I want them out of there" At around the same time I see the GYN surgeon who decides a hysterectomy and ooph would be a good option for me. Either that or I could be on tamoxifen and have an IUD put in and have constant worries about the thickening of my uterus. Since this is the Mayo it could be done in one surgery.
Soooo on May 22 I had VAT surgery to remove the two nodules, and a preventative hysterectomy and ooph. I swear I thought I was going to wake up to hear I had lung cancer. It has been a hellish couple of months. I went under and woke up. The first thing I asked was, "Do I have lung cancer??" The nurse smiled at me and said, "No Nora, you have Valley Fever" Valley Fever is a fungal infection prevalent to the desert sw region. It's a spore that you breathe in during dust storms, dirt, etc. They said when the immune system is compromised (chemo) it can hit you. So that explains the lung pain, fatigue, constant "yuk" feeling. So often Valley Fever is misdiagnosed as lung cancer. I have a spinal tap, labs and an appointment with the infectious disease doctor early next month. Not looking forward to that but dang, it's so much better than what I thought I was going to be going through. Lesson learned for me.....don't think the worst even when it seems bad.
As far as the hysterectomy and ooph. I am happy I had both of those done. The GYN told my husband that both my uterus and ovaries were not in good shape at all and that it is one thing I don't have to worry about now.
I was in the hosptial for 3 days and still in a bit of lung pain but so much better. Just dealing with the Valley Fever crap right now.
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Oh Nora, how absolutely scary! I am glad it wasn't what you thought, but valley fever is nothing to sneeze at! Please let yourself have time to heal from the surgeries and vf too. Much love.
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Wow, Nora! You really HAVE been through a tough time! I'm so glad you have some answers now and can look forward to healing.....hugs!
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Thank you. Yes, Valley Fever can be scary in itself but I will take it anyday over being at stage IV right now. I am on anti-fungal medicine right now and probably will be for awhile. I find out all the details when I meet the infectious disease doctor.
As my husband said, "I never see anyone so happy to hear they have Valley Fever in all my life" LOL
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Here's a question for anyone out there on this forum; did anyone decide not to have the bi-lateral mastectomy? I've completed chemo, down to last 3 rounds of herceptin. I've heard multiple stories of expander failures, and the months it takes, before the implants. Can't find BS and PS in Dallas to do a similtanious procedure. Add to that, I'm broke and the MSTX with expanders, would take me into 2013, with thousands in copays. Thoughts? Suggestions?
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Scottie,
Lots of them dont. I was offered a lumpectomy. They also didnt think any nodes would be affected so I dont know if they would've ended up doing a mastectomy?? I did have a bi-lateral mastectomy but it was totally my choice, nothing that was pushed on me.
If you are wanting immediate reconstruction look into DIEP.
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I'm 60 yrs old, I don't think I could put myself thru that at this stage. ONC suggests the double plus removal of overies. I'm just tired and want it done; but selfish enough to still want breasts.
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Well you are correct, DIEP is a VERY hard surgery that you have to be prepared for mentally and physically. Is there a reason he is suggesting a double mastectomy with no nodes involved and a small tumor. Granted I see it's grade 3 but still??
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Nora- Wow! I am so happy for you! That must have been something. Wishing you well and hope you are feeling better soon.
Scottie- Lump for me; wasn't really given a choice at the time. Told BS I didn't care, he wouldn't even discuss it. He said we could do that later if I wanted. Why the MX? Your tumor was small and no node involvement. Margins clear? What is your Onc's reason? Why the ovaries? Are you doing an AI?
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OMG Nora. So glad it's not mets. I think Suzanne Sommers (I'm not a fan) also had the issue of Valley Fever being mis-diagnosed.
Scottie I didn't have any issues other than a 1 month delay due to shingles. It's a process that takes a little time but worth it in the end. I much rather do this than Rads. From the start I thought double. MRI results got my BS on board with the double (recommended acutally). Remember most women post about issues, not how great they are doing. I remember when I first came to this site I was deathly afraid of LE. Well I did get it but it's pretty minor. Just wear my sleeve and take precautions. Many of us LE ladies have it under control but that's not what you read about. BTW my neighbor is in her mid 60's and doing recon on the one. She also had rads. 60 isn't old nor is age a reason to go boobless unless you want to. If you have some health issues that might complicate then I can understand. I would also talk to your doctors or a social worker about the cost issue.
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I am also Brca2 +, with an ONCA-type DX score of 41, which said chemo would be my best option, but with the bad genes, gives me a much greater risk of reoccurance. If I have mastectomy, then won't have to do rads, there-by, reducing my risk of reoccurance. Regarding the cost, I've tried and applied for assistance, with no luck. I'm single, with no other source of income. All sorts of aid if I didn't work, or have insurance, but since I do, I don't qualify. It's a catch-22 no matter which way I turn. Physically, I don't think I could handle the true reconstruction; that's why I was hoping for just implants. There's nothing simple with this disease, is there?
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Scottie I hear you. Even with implants we dug into savings because I went to an out-of-network MD (long story). I did get implants and to be honest I'm glad I did. I wasn't interested in any more scars on my body. Also although there can be issues with implants there can be issues with the other surgeries too. There are less issues with implants if you don't have Rads. I'm so glad I did the double. If given the choice I would do it again. So many of my pals here worry every time the go for a mammo. With my old dense tissue it took them 4 years and my tumor got to 6-6.5 cm to find it in my small barely B breasts. The LCIS was only spotted in the MRI. I tested negative for BRCA2 but if I did I would have of course done the double and get the ovaries out too.0
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Nora,
Thank God you are ok. What a horrible, horrible thing to experience. Valley Fever doesn't sound great, but I have to agree with you...its not METS. Whew.
I think you will be satisfied with the Ooph/hyst once you are all healed up..meaning, it is one less thing to worry about!! I always had problems with my lady parts...so I'm glad they're gone, well half for me anyway...heh.
This is morbid, and I hope no one is offended, but if we look at the stats, some of us from this group likely will get mets down the line. I would love for us all to keep in touch here, for encouragement, support, and frankly, because it is an important (to me!) on-line place to make connections with the TRIPLE + BC experience.
We don't all have to agree all the time. (How boring!) But that doesn't mean anything in the big picture as far as I'm concerned. I don't agree with my RL friends all the time either...heh.
Anyway, THANK YOU for sharing that. I am so glad you are ok, well, treatable.....take it easy...I can't imagine it is easy to recover from the Fever and surgery at the same time.
Mucho love mamacita.
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Nora - TG not mets, and hope you recover from the fever soon - as a canadian never heard of this before!
scottie - BRAC+ is the reason they are recommending the msx, unfortunately the mutation puts you at higher risk for another BC. They would want to remove your ovaries aswell. I hope you can find a way to get this done. I still don't understand why the US can't adopt public healthcare like we have here in Canada -honestly saddens me when i hear stories about care being denied. But thats another discussion....
i am mtg with my PS tomorrow and getting together my list of questions...anyone done a SKIN SPARRING msx? i know there is a thread on the board about but i wanted to ask if you guys were told this is safe for cancer prevention? not sure if i am a candidate b/c of the radiated side
lago - did you go direct to implant? i really don't want to do the TE process but it seems there is no other way
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tonlee i had the same morbid thought...i pray we are a statistical anomoly and none of us have to deal with the beast ever again
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TonLee
Thanks so much. Yes, this is doable. As much as I complain during the day that I want to get out and do stuff but the fatigue gets me down I think, "This could be 100 times worse!"
You are right, with all of our diagnosis' (+++) one of us one day may get metastasis, it's just the nature of this beast. I just was so scared and didn't want to get anyone else all scared for themselves but in hindsight we have always been there for each other.
Thanks to everyone else who responded as well. I didnt know that Suzanne Sommers (not a fan either) had her dealings with this either. Come to find out, the county where I live (Maricopa) has the most reported cases out of anywhere. Sure gave me a different perspective of dust storms etc.
Scottie: Dang, I would want a BMX too given your info. It just doesn't seem right to need something and not having the resources to be able to get what you need. I know I owe the Mayo so much right now it's depressing but at least I do have insurance and I also have a husband who works full time and we are ok. I am not working at this time. I dont even think I could work at this point but would like to once all this stuff is straightened out. I cant even imagine what it would be like if this were not the case.
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Good morning Ladies and Happy Tuesday!!
Thank you everyone for the warm welcome.
Nora: SO happy to hear it wasn't mets. Reading your story I was holding my breath. I NOW know what all of my friends and family meant when they read my blog about a scare I had in March. Not ANYWHERE near the intensity and severity of yours but a scare none the less. Unfortunately we will ALL experience this whenever we find a new mass or have a troubling symptom.
TonLee: Not morbid, I have thought about it as well. Staying in touch is a great idea!! We are FAMILY now, brought together by a horrible disease but what a silver lining to all of this! I have a feeling that all of us in here were good, compassionate, caring women before this but I think this experience has made us BETTER. More empathetic, more understanding, more caring. I for one plan to stay on this site and continue to help new members. Already 1 newly diagnosed sister and I are meeting. I am overjoyed to have been able to help her and to point her to an awesome Cancer Center here. I always look for the positive in things, if there can be one to be found it is that it has given me a very rewarding avenue to be give back and help others.
In answer to the menstration question, I had a vaginal hysterectomy in 2004. Still have my ovaries. So no period but I did start with night sweats shortly after 1st chemo treatment. Dr said I would probably go into early menopause but may be temorary. I looked at her and said, Temporary? Ummm NO, we need to make sure this is permanent because I am NOT going through this part again. lol Then when I had to start Tamoxifen she said, You are going to hate me BUT your hot flashes are going to get WORSE...UGH!! They were for about a month but are much better now (2 months on Tamoxifen). Just occasional, mild night sweats. I sleep with a sheet and light blanket and peel blanket off throughout the night. At least now my clothes don't thud on the ground when I take them off in the morning...lol Talk to your MO about herbal supplements. Mine suggested Estroven to help decrease hot flashes and I also take Effexor for them. Flax seed is good for it too. Just always check with your MO before adding ANY med or supplement. Ice to feet and to Axilla areas and groin area (this is where we pack ice when a patient has a dangerously high fever we need to get down fast. My body temp runs 99.8 now and I used to run 97.2 before all of this.
Well, shower time. Rad #32 today (5 more) YES!!!
Have a fantabulously blessed day!
Healing Hugs,
Denielle
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denielle - I am surprised your MO recommended Estroven to an ER+ patient - because of the soy content. Did you have a discussion about this - just curious.
nora - it feels weird to say I am glad it is only Valley Fever - but I am! You must have been so worried! Sorry you are having to deal with it nonetheless, and hope the treatment goes smoothly.
tonlee - so right - we are a little fam here! We definitely form a bond!
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Danielle,
I had a few bad hot flashes after my hysterectomy/ooph last month. The GYN and my ONC had told me before I even had the surgery to let them know if I wanted something for them and they would prescribe Effexor for it like what you are taking.
I haven't had anymore hot flashes since then. with everything going on I dont know if it's the Effexor or what but I am going to stay on it for now.
The other option was the ONC would give me a depo shot. I know too many of my friends who have had that and gained weight when they used that as their birth control method. I did not want the weight gain.
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Morning SpecialK. Hope your day is going well so far. Yes we discussed this. When I took it (for about 3wks) I took the Estroven nighttime, because my hot flashes were night sweats mainly, which does not contain soy. But my MO feels that the studies so far do not prove an increased risk of recurrance for ER+ breast cancer patients and that it may actually help HER2+ patients on Herceptin increasing the effectiveness of the drug. With ER+ patients and those of us on Tamoxifen, the concern was that soy (which contains natural plant estrogens) would bind to estrogen receptors on cells (essential doing what natural estrogen does and we are trying to prevent with Tamoxifen) but some research is showing that the soy is helping block the receptors on cells, clogging them instead of being absorbed. Plus the amount in the supplement is small. It is a benefits out weigh risk and it isn't long term. Other things that also contain plant soy are: Wheat, Oats, Apples, Beans, Carrots. Over 300 plants.
I haven't had to take it for a month now but have it if I need it. But I caution EVERYONE with ANY medical disease or disorder to ALWAYS check with your DR before adding ANY RX Drug, OTC medication, or supplements.We never know what may counteract what or even make things worse.
Much Love Ladies!
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Wow nora, what an incredibly scary ordeal to go through!!!! Hugs and healing energy to you to recover from the Valley Fever!0
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TonLee: I agree wholeheartedly!!! I feel so honored to be welcome to express my concerns, fears, and to encourage each other here, even tough I kind of feel guilty (weird!) that I am not going through the whole treatment challenges that all of you have. You ALL have been my examples of strength and courage and I can't thank you enough!
Scotti52: you are not "selfish" to want your boobs! Whether 28 or 82......or any other age, our breasts are part of who we are and how we see ourselves. NOT THAT THEY DEFINE US!!.,
...but who would willingly give up another part of our body without some grief? I would encourage you to continue to explore all reconstruction options and financing options....don't give up. Then make the decision you feel most comfortable with. (((hugs)))0 -
Scottie - have you looked into the one-step implant procedure? I know some women on my MX thread did this with success.0
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Rozem My boobs were barely a B. My BS did do skin sparing but even if they offered a direct to implant I wouldn't have been a candidate. TE's are temporary and not too bad. Just be sure to have them fill you slowly.
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Mine was skin sparing and nipple sparing. I however have heard controversy about nipple sparing.
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I had skin sparing bilaterally with nipple sparing on the R only. Cancer was too close on the L side for nipple sparing.
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Oh Nora....
What a terrible time you've had! I suspect many of us will deal with these scares down the line but your last few months were more than difficult!
Scottie,
I'm not sure I'm understanding you correctly but I didn't have a mastectomy. Neither my BS nor MO suggested it for me.in fact although the decision was mine, they were definitely steering me to lumpectomy. I was seriously considering BMX but decided against it .
I had neo adjuvant chemo followed by lumpectomy and rads and continued herceptin.0 -
That's what I had originally planned. I had already found the BS and PS and had a surgery date. Now the PS has left his practice, and resigned. So I'm starting over with recommendations from the BS, but so far, the two she gave me, are steering me toward the TE's, rather than the one step process. So now it's on to the next PS, and the next, and the........., well you get the point!
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