Getting more scared by the minute

StaceySue2U

I got my cancer diagnosis on the 28th. We're still waiting for my markers to come back. I learned that I have 2 tumors in my right breast, the biggest is 3.5 cm and I also have an 8cm long line of microcalcifications that need to be looked at further. I'm having an MRI on the 4th. They're calling it stage 2A for now but I have a bad feeling that it's worse than that. My aunt only had one 2cm tumor when she was diagnosed and 4 years later she was stage IV. 18 months ago, she was informed she had 2 months to live so I guess she's doing pretty well, considering everything. She was HER2+, ER+,PR-. Since my diagnosis I've learned that my dad has had 2 aunts and 13 cousins with cancer and he has a mass on his lung that is being monitored. His brother died 5 yrs ago of lung cancer at age 50. My aunt had her blood drawn for genetic testing today and I have an appointment for genetic testing. We're not sure, but my grandpa might have been Jewish.

I've already decided to get bilateral mastectomy, don't know if I'll have to have chemo first or not. I want to get DIEP reconstruction and my breast surgeon says when she does the mastectomy she'll put tissue expanders in and I can have the DIEP when I'm done with treatment. Why not immediate reconstruction? Does she think I'll need radiation? I wonder if the expanders will be over or under the muscle.

I can't stop obsessing over it, reading this forum for hours. People keep trying to reassure me - because they know survivors. It doesn't help because 2 months ago I was assuming I'd live to be 100. Now I get to feel lucky if I make it another 10 years.

I'm 46.

LisaAlissa

StaceySue,

I was so sorry to read of your revised diagnosis, but glad to hear that you have a better med team now. (It's important to have confidence in your med team--if you ever want to have a second opinion about anything they tell you or recommend, a good team will be glad to have you do that.)

I can't help you with reconstruction decisions, but there are certainly lots of experts around the country. (I recall reading that there is a group in New Orleans, LA which has gotten raves from patients from all over.) Be sure that the plastic surgeon you are working with has done lots and lots of whatever version of reconstruction you want! It's not too early to be looking into the sort of reconstruction you want, then finding someone who considers that their specialty.

On the obsessing. In a very large sense, Nothing has changed because of your diagnosis. You may still live to be 100. Or you might be hit by a bus (tomorrow!). None of us come with an expiration date on our toe. All we can do is live the days we're given, one at a time. The only time we have (or have ever had!) is the moment we're in. So try to appreciate the joys the current moment/day can offer you, instead of worrying about days that aren't yet here.

Yes, plan. But when you find your planning turning into obsessing, try to move your attention to something you enjoy that requires your focus and attention. Why not?

HTH,

LisaAlissa

EstelaLorca

Hi StaceySue2u,

I'm so sorry that you're going through all of this. This has often been called the eye of the storm. Until you know the results, you will feel like you're losing your mind. Once a treatment plan is in place, and you know exactly what you're up against, it'll get better.

So try to distract yourself, prepare your body for what it's about to go through. I exercised, changed my diet, and asked for a prescription for ativan/lorazapam. Hopefully that's make you feel like you're in control somewhat. And write your questions down for your doctors. So if you want to discuss them here we can help you.

I was 32 when diagnosed, no family history. I boggled my mind.

I was told once that you shouldn't compare your cancers, sometimes people could have very similar diagnosis and yet have very different outcomes. Just focus on you and your body.

Good luck with everything Stacey, xoxoxo

StaceySue2U

LisaAlissa thank you for the reassurance and talking me down a little.

EstelaLorca you're right - I felt like I was losing my mind and now that I have my makers back I'm feeling a little better. I'm sorry you got cancer at such a young age. God bless you!

This morning I got the first bit of good news I've had yet. My markers came back and it's 100% ER+, 2% PR+, Her2- and ki67 is only 1%. They're going to give me my oncotype after surgery. I should be hearing back with them about the surgery date some time today, the breast surgeon is coordinating with the plastic surgeon. They are planning to do skin sparing mastectomies but I can't keep my nipples. They're still not willing to do immediate DIEP reconstruction but they will put the tissue expanders in and wait for the circulation to the skin to be completely restored before doing the DIEP. I'm being seen at KU Cancer Center and it's one of the best cancer centers in the US. They have several dedicated breast surgeons and do the surgeries and reconstructions every day.

While I've been waiting for some sort of treatment to start, I've been using frankincense per my aunt's recommendation. She's been using some different complementary therapies and she says her cancer hasn't gone away but it seems to have stopped growing. She was given 2 months to live, 18 months ago. So I've been doing the frankincense oil on both breasts and under my tongue and have ordered the other therapies she's using and they should come in the mail soon.

I started having sharp burning pain in different parts of both breasts. I don't know if the frankincense has anything to do with it. This morning I did a thorough check of one of the spots where I've been feeling a pain and I can feel a deep lump there that I didn't feel before. I have large breasts and this spot would have been very easy to miss. My guess is that it's been there all along but I'm wondering why it started hurting. I've been reading that pain is common when chemo starts to work - so maybe the frankincense is doing something good.

.

EstelaLorca

StaceySue2U

It sounds like you're in great hands, and that everything is falling into place. it's so important to have confidence in your team. I pray that things move swiftly for you (paste in big virtual hug here).

It's amazing to hear stories, such as your aunt, that surpass the time doctors give us. I hope she is doing well and in good spirits. The mind is an incredible thing.

I've never heard of Frankincense, I will have to look it up.

Keep treating your body well, as well as your soul.

xoxo

jbdayton

Not exactly the same scenario but I did chemo pre-surgery and had a skin sparing bilateral mastectomy with tissue expanders under the muscle, then radiation, then delayed DIEP. One suggestion make sure you discuss sewing the muscle back in its original place and put the tissue flap on top of the muscle like it would have been with immediate reconstruction. Mine had to be revised in a third revision surgery and took me three more revisions to get a result I was happy with. I don't want to scare you but I was the 1% that had a failed flap and other complications. I feel everyone needs to know the good and the bad. Would I do it again? You betcha.This seems to be a fairly common method to do delayed especially if they think you might require additional treatments. You have to go with your gut.

I decided to do delayed even not knowing if I would need radiation. It was just a small chance going into surgery but my tumor was deep near the chest wall and after surgery they found DCIS in the tumor bed so we made the right decision because radiation was needed after all.

Good luck as you go through this difficult period of decision making. I hope my comments possibly helped.

StaceySue2U

EstelaLorca I have met so many people who swear that frankincense helps cancer. I don't know if it does or not. I figured "it can't hurt and it might help, so why not?" I like the smell and it's very calming. I already had some because I used it for aromatherapy. Thank you for the prayers. We all need all the prayers we can get!

jbdayton they didn't sew your muscle back in place? Did they put the flap on top of the muscle? Did your reconstruction turn out OK after all the complications were resolved? Are you enjoying a nice flat tummy?

LisaAlissa

Hi StaceySue!

I don't have any idea if frankincense helps or not...but there are lots of different things that get suggested. The only thing I want to add is to be sure that your medical oncologist knows about all of the "extras" you add. Occasionally there will be one or the other that the MO will want you to avoid, based on whatever they're prescribing at the time.

For example, I was drinking lots of coca-cola at the time (not because I thought it would help w/ cancer...just because.) and I was asked to stop all caffeine while I was on a particular drug. Apparently caffeine can block a cell site that particular drug needed to work properly.

So there may be something that they don't want you to use either at all, or during the duration of a particular treatment.

HTH,

LisaAlissa

Etc: spelling

StaceySue2U

Thanks for the heads up, LisaAlissa!

NoWhyToIt

I was your age when I was diagnosed. The staging started at 2 and then moved to 3 in the end. It honestly doesn't matter. The truth is even if one ends up at stage 4, you still have many treatments available to you. Breast cancer is a good cancer to have, I know that sounds strange. Don't live through worst case scenarios unless you have to. Be kind to yourself. And honestly the most important this is to get the cancer out. Don't worry about the plastic surgery part right now. This will keep you focused on making the best decision for yourself. Anyone who is talking too much about plastic surgery should be suspect. And by the way 2 years after diagnosis and I am good as new. Hope you find that comforting. You can get through it.

StaceySue2U

Thank you for the reassurance, NoWhyToIt. I'm very glad to hear that you're doing so well now and it is very comforting to hear.

It may sound strange, but I think more about what I'm going to look like in the end than I do about whether I'm going to die or not. Must be the child in me - ridiculous fear of bodily mutilation that I just never got past. If I didn't know that I could have good plastic surgery, I don't think I ever would have the courage to get mastectomies and I would be freaking out about a lumpectomy because of the size of the lumps and microcalcifications. Everybody says the likelihood of dying from this is small. The likelihood of having my breasts disfigured is 100% so I'm very interested in discussing plastic surgery options.

msphil

honey i was diagnosed at 42 just when i was planning our 2nd marriages i thought i would die when i met the man i had prayed for, But God had other plans for me I am now this yr  22 yr Survivor(Praise God) with my faith family and friends for support and my Fiancee at the time now my husband of 22yrs, we were married after chemo complete and before radiation treatment started, I pray this is the Inspiration God left me here for. msphil(idc stage 2 L mast chemo before and after rads and 5 yrs on tamoxifen).

StaceySue2U

Thank you so much, msphil. I was feeling like I was going to die right when life started getting good for my husband and I. We got our debt paid off and bought an RV and had plans to go on the road full time while I did travel nursing and hubby did campground hosting. I was going to spend a few months here in KS with my family while DH finished up his last few months of work before retiring and then boom - hit with the bad news. It's wonderful to hear that you're a 22 yr survivor. Praise God!