2017 Diagnosed-- A Place To Share "Whats Next"
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TaRenee— thank you for your post. Sorry to read about the loss of your grandmother. Your words painted a picture of love.
Friends and family... that is what life is all about.
Made it through a day with no tears. Sadness, yes, but when I felt the tears, I thought of a time we were together and smiled from the memory, from the experience.
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Day by Day Dodgersgirl. Day. By. Day. Keep smiling at the memories.
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DodgerGirl,
So very sorry to hear of your loss. Hoping time is kind to you in your healing, and you'll soon be able to look back and smile without crying. She sounds like an amazing Mom! Love and prayers to you and your family!
Vickki
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Vickki, thank you
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havent been on in a while. Dodgers girl, sorry for the loss of your mother. So lovely to hear that she passed comfortably and you were able to find something positive out of the experience.
Yes those palliative care nurses are wonderful.
take care
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Tpralph—. Thank you.
Finding another new norm. Without mom, we visit dad everyday. DH fixes lunch and dinner for dad. (I still work full time. DH is retired)
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Hello all, I am very new to this, just being diagnosed I have no idea of what to expect. I’m looking for answers...I think. I have been give the option of lumpectomy followed by radiation and then taking Arimidex 1x day for 10 years or bilateral mastectomy. My first thought is to just get rid of it, remove both breasts and look into reconstruction. I am reading information on DIEP Flaps - does anyone have any information they can share? Pros & cons, I am wanting honest answers to guide my through this journey. Is lumpectomy better? I really would appreciate any advice/experience you can share. TIA
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Your first reaction upon getting this news is to view your breasts as time bombs waiting to go off and kill you. They already have gone off! When I first got the news that I had cancer I instantly knew I wanted them off! Gone! Goodbye! I didn't EVER want to be going through this again!
Thank god my surgeon, a wise and compassionate woman, listened to me rant about wanting my boobs off, nodded her head and completely ignored me. She said -no woman , having just been told she has breast cancer, is in any mental condition to make any long term medical decisions. Decisions made under those circumstances are made with the heart and terror, not with rational statistical or scientific judgement. She said I needed to think about it, consider the numbers that were on my side, and not make a decision based on a knee jerk reaction that I might regret later.
- she said that it's easy to remove breast but a whole other story building new ones. If anyone compares reconstructive surgery with a 'boob job', those people are fools and idiots because the two surgeries are nothing alike! Just read about it here, this site is FULL of information that tells you reconstruction is not a boob job! Removing breasts is simple, but putting them back is not. Think about it.
- she made it utterly clear that my life expectancy WOULD NOT GO UP if I removed my breasts. She said that lumpectomy and radiation, in my situation had THE SAME OUTCOME as mastectomy. She said if she thought a mastectomy would save my life she would have given me no other options. But I did have options. I had the option to save my breast. She urged me to think this through with a rational mind.
- she said that if I found it too mentally burdensome to carry on having breasts, that the worry was overwhelming me, I could always have them removed later if I wanted. But putting them back once they were gone is not so simple.
The thing to know is that breast cancer in your breast doesn't kill you. Breast cancer in your breast is often the best case scenario. It's when breast cancer sets up house somewhere else that you've got trouble. And removing your breasts does not make you safe from metastatic breast cancer. It might be a sacrifice you make that gains you nothing. You need to think about this.
I asked my surgeon what my boob would look like after she was done and she couldn't answer me. She said she would do her best to leave my breast as intact as possible while getting all the cancer out. Then after healing and radiation, give it at least a year to let the breast tissue settle down and THEN decide if I can live with what is left or I want to tweak it or remove it or remove both or rebuild both... At least I would have options.
SO if not dying from cancer is your goal, then ask your doctors if mastectomy for DCIS is a reasonable reaction in your case. Is it going to improve your life outcome more than lumpectomy and radiation? If the answer is no .... then give some thought to this.
This is a miserable, scary place to be. You feel like you are making life and death decisions. In some respects, you are. But good or bad you will have to live with those decisions and please take the time to imagine yourself three years from now, feeling okay, getting on with life (it will look the same but rarely does it ever feel the same) and if your breast is gone will you regret it or have peace with it? Do not make any decision believing that loss of breast = no more cancer, because that just isn't a promise anyone can make you. Hugs to you.
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charlie1966…
You should make your own post in the "recently diagnosed" forum or DCIS section.
I did bilateral mastectomy for DCIS. At first they gave me lumpectomy brochures but no way - no thanks. My own mother had DCIS did lumpectomy/radiation and it returned in her opposite breast 5 years later. I am 20 years younger and got DCIS at age 35. That's way too much time and opportunity for it to come back or start anew. The idea of having radiation that close to my heart and lungs was very unappealing nor do I want to take hormonal drugs. It seemed quite pointless to try to save part of a breast that would have a big chomp taken out of it (upper-outer quadrant) I care more about quality of life...... I also didn't get reconstruction. Recovery was quite easy. I am a rather active person so messing up other areas of my body to make a breast mound did not make any sense to me. Some articles say that mastectomy is overkill for DCIS but oh well. It's too much of an ordeal dealing with margins, radiation, drugs... unless you have very small DCIS and very large breasts. I'm pissed I had to lose my breasts but breast cancer is basically choosing the least shitty option for yourself. All the options suck really.0 -
Shoulder Pain has been getting worse all of February and Norco from M.O.wasn't helping. I just thought pain was a Keytruda side effect but turns out that it is actually from the cancer tumor in my clavicle growing into the brachial plexus area.
When I went to ER on Feb 8 for the unbearable pain, ER dr thought pinched nerve/tendon, gave me steroid. Also within that same week I finally started palliative care for the pain arranged thru my M.O. - truly a god send. But things still were not improving.
Then a few days later, on Feb 20 when I went to M.O.'s office for my #6 Keytruda, and when he saw what shape I was in, doc ended up admitting me to hospital. I was in hospital 4 days but they were able to do MRIs and other tests to figure out what was really going on.
Am home now and pain is getting more controlled with fentanyl patches and oxycodone. Still don't have use of my right arm and hand.
Am starting 10 sessions of rads to the same area I had rads to in July 2018. Starting therapy to get arm and hand back. They come to my house which is great. This happened so fast. I never thought the progression would go this way. I don't know what trt will be after rads. Have to be on disability from work which I still have to start that process. Family has really been helping so much.
Whew, glad I was finally able to get this typed one handed and update everyone. Thinking of you guys.
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Dazzlingeagle, it’s great to hear from you but so sorry it’s due to what you’ve been through.
Hoping your palliative team keeps your pain controlled and that rads shrink the tumor to eliminate your pain.
Sounds like a whirlwind hospital stay and sounds like your medical team is on it. That’s great.
I am not going to ask you a lot of questions in light of having to type with one hand. But do want you to know that we are all glad to hear from you and wish you less pain VERY soon
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Sending good thoughts your way DazzlingEagle!
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Sending you good thoughts and sisterly love. Hoping your pain is under control soon
Vickki
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Dazzlingeagle- I'm hoping your palliative team finds a way to alleviate your pain. You've been through a very difficult time in a very short period of time . good luck to you. Your medical team seems to be on top of things.
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Hello! Just stopping in to catch up and I hope things are going well. I know, of course that there are many difficulties to deal with and am keeping you in my thoughts. I know some of you have list someone near and dear to you, and extend my sympathy for your loss.
I am havung a good year so far. I am now om the sixth minth schedule with my MO; as reports were good in October, I do not see her again until May. The only thing of concern was that my blood calcium levels were high, and she was going to order a parathyroid scan, but as I have not heard anything more about it, I am assuming that she has decided it was not necessary. I have promised myself I will not worry About things until it is time to do it.
To break up the winter montgss, we went travelling. We have just come back from eight days in Mexico, and had a very nice quiet holiday. We got an aparthotel so could supplement meals out with our own cooking. We didn't do any touring, but went for long walks and had naos every day. I am thinking it will be our last trip, as my husband no longer feels able. He will be 75 next month and that seems to have convinced him that he is "too old". He does have some health issues and looks at them from the point of view that things couldn't get any worse. Hopefully, spring weather will brighten hus spirits.
Take care; I will try not to let so much time go by. Hugs
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nancy-So glad you were able to get away and relax. Its a shame your husband feels he is unable to travel. Maybe he will change his mind once spring arrives. Can you take a friend/family member and continue to travel if your husband is unable or unwilling?
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it was 2 years ago today I got the phone call advising me that I had cancer. And even though the “treatments” are in the past, the impacts from breast cancer just keep giving..... sigh
Had an appointment last week with my new MO (other MO retired). Sounds like I will be moving from visits every 3 months to visits every 4 months.
This week is my next mammogram and I have 6 weeks left on my clinical trial.
I am having major pain issues with my right knee so seeing an orthopedic doctor soon. Hoping for a cortisone shot. The pain keeps me from sleeping at night.
My hair is almost long enough to put into a SHORT ponytail. Two years ago, I could almost sit on my hair. Probably will never have hair that long again. Finding that short hair sure dries faster.
Still experiencing joint pain from Anastrozole and found that the cold winter weather magnifies the pain. Looking forward to spring!!
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dodgersgirl-You are right. Cancer treatments are in the past but the side effects continue long afterwards. Your knee pain sounds nasty. Hopefully a cortisone injection will relieve the pain. Im headed to work now. Have a great Sunday.
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DodgersGirl, your words struck me. Two years. Isn't it strange the moments and dates we recall. The way we are changed by this. I hung up a new calendar by the phone and casually wondered if I'd be alive when the year was over. My dad died at 66 and I used to be certain I would live longer than he did. I am not so sure. Now 66 seems a long way off. I get through my days pretty good, doing the same stuff that all other living people have to do. But ... it's not the same. I feel like I have been in a constant state of mourning. Like I am weighed down with this immense sadness. Yeah, we're all going to die, but we shouldn't have to think about it all the time. And that's what cancer does, it lodges in your head like a splinter. And even as longer moments go by when you maybe don't think about cancer, it always comes back. Often when you least expect it. It was March of 2017 when a doctor cried with me as she delivered the news that I had cancer. Maybe that's why I have felt so lousy this month? I blamed it on the weather - enough winter already! But maybe it's the reminder of a really scary, really bad time of year. Hugs to all who have ghosts of bad moments lurking over their shoulders.
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Runor, my family are “long livers” (if there is such a category) living into their late 80s to late 90s. Now I wonder if I will get to retire??? Will I see 65?? Thoughts I never really had before dx. Instead, now I think I should do this or that now as tomorrow isn’t promised to any of us. Different perspective about the future.
I just renewed my driver’s license (photo is now with chemo hair... gifts just keep coming) and wondered if I would be around to renew in 4 years. I know, that’s a morbid thought but they do pop into my head. Life will never be the same. But I also know that while it will be different, there are still good times to be had.
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runor and dodgersgirl-I hear you. I rarely ever think about my cancer. It's there; especially when I'm planning for the future. I am hopeful one day that all of us can think about the distant future without the question popping up in your brains, " Whoa! Am i going to be here? I'm extremely healthy and very happy but yeah it's there. My family lives into their late 80s and 90s. They don't just live they Thrive. Let's continue to thrive.
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Runor ... As you wrote «the thoughts always comes back» (...) . It is hard.. I was 31 when diagnosed ... two weeks after mastectomy I gave birth ... two weeks later I started chemo. The doctors keep takling about how agressiv my cancer was. I am so afraid that I want see my two years old kid grow up.... The kid that never got the chance to have a healthy mother...
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had an appointment Tuesday with an orthopedic doctor due to knee pain that now keeps me awake most nights.
It was a weird experience to see a non-cancer doctor where their works doesn’t involve chemo type meds and side effects.
Had a cortisone shot in PES bursa area and will see Dr again in a couple of weeks for another injection in my knee (another meaning another cortisone shot overall, first shot to my knee) as I am now fully bone on bone arthritis in that knee.
Shot didn’t hurt. But it did keep me up all night. Finally dawned on me that it behaved just like the steroids I had with Taxol. I crashed around 8 pm last night and for the first time in a long time, slept without severe knee pain. !! Now I know to make my appointments for cortisone shots prior to a day off so I can be up all night
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dodgersgril and runor: ditto
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DodgersGirl, so sorry about your knee and I hope that second shot does the trick for you. All is well with me although of course I had to get hearing aids to mask my tinnitus (a possible side effect of Tamoxifen tho it could also just be age) and my every-10-year colonoscopy just turned into every-3-years since they found serrated polyps (no connection to breast cancer however per my terrific doctor). Turning 60 has NOT been fun but all my breast cancer follow-up scans have been clear, my osteoporosis has improved over the last year, and I am still optimistic about maintaining a good quality of life for quite a while yet. And geez I do join you all in wishing spring would just arrive already! I have a check-up with my surgeon later this month then hopefully a doctor-free summer.
To keep himself occupied my DH arranged for us to raise a darling puppy who will grow up to be an assist dog, so that is our current project. We will have Neo, a golden retreiver/labrador mix, until he's 15 months old. Then he goes off for training before making his home with someone who is disabled. Photo attached for all you dog lovers!
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awe...that is one cute puppy.
Dodgersgirl- I hope your knee is feeling better.
I am doing better with cancer thoughts too. It doesn’t help having to go for the monthly faslodex shots but if it keeps it away I am good. Not complaining. It is just a monthly trip to the oncologist’s office. I am still on a 3 month visit routine with the oncologist and 4 month visits with the breast surgeon. I am two years out. I asked my BS on Thursday when these appointments would go away and his response was “I will be keeping a close eye on you for a long time.”
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georgia-adorable dog. Name?
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What a precious furbaby.
Diane
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Georgia, Neo is adorable (and I love the curious squirrel in the background!). How wonderful that you and your DH are doing this.
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Thanks everyone! We did not give him the name Neo, by the way, Canine Companions for Independence did. All the puppies in his litter start with the letter N. He is a lot of work but soooo adorable!
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