Just Diagnosed with breast cancer could use some insight

DonnaMae

I just found out last week I have invasive carcinoma which is ductal and lobular.  This is my first post and needless to say my life has just turned upside down and I have questions.  I am almost 62 (next Friday) and have been taking BHRT for almost 5 years. I was planning to go off this June when I met with my doctor.  I have no history of breast cancer on my mom’s side and one aunt on my dad’s side.  They found two small tumors in my left breast 1.2 cm & 0.6 cm and they are estrogen and progesterone positive receptors.  The grade is 2.   I had an MRI and it showed some speckles in between the tumors that my surgeon thinks could be specs of cancer cells which would match with the lobular cancer diagnosis these specs are in the in between area where the needle from the biopsy had to pass to get to the second tumor so they could have to do just with the biopsy trama.  She has said it would be best to do a mastectomy and if there is nothing in the lymph nodes which currently shows clear and if it doesn’t turn out to be a big tumor referring to the speckles between the other two tumors I won’t have to do chemo or radiation.  Of course, this is a reason to hope but still very nervous.  My doctor doesn’t recommend doing a bilateral. I see my plastic surgeon next week about reconstruction.  I am leaning towards a flap if I am a candidate (I have plenty of excess me).  I am considering the bilateral but really don’t want to, but wonder about how much i will worry it will come back etc. 

1)I  am wondering how others made the decision to just do the one side and if they have had problems or things are fine. 

2)I also wonder expereinces with doing the flap for reconstruction and how much extra time for recovery.

3) If you were taking BHRT or HRT prior to cancer diagnoiss what was your expereince or have any thoughts? 

4) Appreciate any experiences you are open to sharing that might give me insight.

meadowglade

Take one Step at a Time

I am 62 and found out I have triple negative, a rare form. I found out in Nov. I finished one round of chemo., surgery and now in radiation. After that a pill form of chemo. then a trial. I consired getting a maastectomy, but was told it was a last resort if it came back to have it done. I would talk to the plastic surgeon and see what they recommend from their point of view. I had/have very honset doctors. 

Mine was a Stage 2B, I had three lymph nodes infected. The wait is the hardest. I wanted to get started ASAP as in yesterday, but it did and still is all falling into place. Just breathe and take it one moment at a time. The chatroom here is a great place to go to as well. I wish I had found this site when I first got start. Blessings

DonnaMae

meadowglade said:

Take one Step at a Time

I am 62 and found out I have triple negative, a rare form. I found out in Nov. I finished one round of chemo., surgery and now in radiation. After that a pill form of chemo. then a trial. I consired getting a maastectomy, but was told it was a last resort if it came back to have it done. I would talk to the plastic surgeon and see what they recommend from their point of view. I had/have very honset doctors. 

Mine was a Stage 2B, I had three lymph nodes infected. The wait is the hardest. I wanted to get started ASAP as in yesterday, but it did and still is all falling into place. Just breathe and take it one moment at a time. The chatroom here is a great place to go to as well. I wish I had found this site when I first got start. Blessings

Thank you! I have the anxity

Thank you! I have the anxity about wanting to get it done worried that it is growing by the minute but know that if my doctor thought that was the case they would move things along.  After i talked to the plastic surgeon on Thrusday I should have a better idea.  Thanks for your insight.  Blessing to you too!

meadowglade

Anxity

I had a meltdown on Friday when radiation called and said that the machine was down and the other machine wasn't compatible with my treatment! My husband calmed me and explained some things to me then I called one of my best friends. She has delt with cancer 4 times and has been cancer free for 10 years! She went on to explain that it is a good thing for my body to have a break like that.

I feel that I have three solid places I can go, my husband, Karlene, and now here. We really aren't alone, we just need to reach out. It doesn't matter what type of cancer you have we all have the same anxity and worry. Blessings

DonnaMae

meadowglade said:

Anxity

I had a meltdown on Friday when radiation called and said that the machine was down and the other machine wasn't compatible with my treatment! My husband calmed me and explained some things to me then I called one of my best friends. She has delt with cancer 4 times and has been cancer free for 10 years! She went on to explain that it is a good thing for my body to have a break like that.

I feel that I have three solid places I can go, my husband, Karlene, and now here. We really aren't alone, we just need to reach out. It doesn't matter what type of cancer you have we all have the same anxity and worry. Blessings

I have just started sharing

I have just started sharing my diagnois with some  friends and hope I find the one who can relate or calm me down when I panic with the uncertainty.  My husband is scared about the whole situation but has shown a comasionate side I didn't know that I have seen before.  My mom who is 84 is doing research and calling and checking on me every day. I am so happy that I have found this site.  Thank you so much.

meadowglade

My Rock

My husband is my rock! He hates that I have to put poison in my body to fight this, but understands why. He makes me laugh when I feel like crying, or just to hear me laugh. He will go to the appointments and treatments that I need him to be at. He will back my decisions, if he has a question about it he will ask. I don't have him with me all the time. He has a very hard time in clinics and hospitals, but like I said he is there when I need him. We have been married for 41 years and have been through alot, but nothing close to this. 

When I started sharing I was so shocked at all the compassion, careing people I had in my life. I had some come to me and tell me that they are a cancer survivor, I didn't know until then. I have one that is a 17 year survivor and is there when I need her. One of my best friend, whom I thought fought cancer 2 times told me the other day it was 4 times, and yelled at me for not coming to her more often! I told her yes I would because she told me I wounld not ever be a burden. Share, some may not understand and be hurtful, but many will surprise you.

Rememer there is this board and the chat room. That room has been a life saver, and I am new to this site. You are not alone in this fight! We are all stonger then we think. Blessings.

tryingtostaypositive

New to site

I was diagnosed with triple negative breast cancer in March.  I recently finished my 4th and last round of AC chemo and will start my 12 weeks of Taxol next week.  I have done well and am blessed but for some reason I am scared to death to start the Taxol.  They say it is not as hard as the AC.  I guess the weekly regimen and side effects are what has me so scared.  I work full time and am concerned about the way the chemo will make me feel without much of a recovery time.

 

Angelsings95

DonnaMae said:

I have just started sharing

I have just started sharing my diagnois with some  friends and hope I find the one who can relate or calm me down when I panic with the uncertainty.  My husband is scared about the whole situation but has shown a comasionate side I didn't know that I have seen before.  My mom who is 84 is doing research and calling and checking on me every day. I am so happy that I have found this site.  Thank you so much.

Mastectomy

Hi, Donna Mae, I am 65 and was diagnosed with invasive ductal carcinoma in left breast, stage 1.  I elected to have a double mastectomy with reconstruction since my cousin told me that her aunt had had only one side done and so she had one perky breast and one floppy breast. I wanted both sides to match so that was my decision. This was all recent as my diagnoxis was mid April 2019 and my surgery was May 9th. I had to wait to find out if i needed radiation (did not) and also the results of oncotype which would determine whether or not I needed chemo. I finally got the results yesterday and was told that my oncotype was 26. 25 and under needs no chemo and 26 and above can elect to have it. My oncologist told me that if I did nothing, the chances were 80% that I would never get breast cancer again. He said taking an anti-estrogen pill (minimal side effects) once a day for 5 years raises that by 10% to 90% chance. Taking chemo, which would mean 4 shots every 3 weeks over a 12 week period (each shot would make me feel sick and tired for about a week, and after 2 weeks my hair would fall out), only increases the chances of not getting it again by 3% more. I chose not to take the chemo since it only increases my chances by 3% more, and the side effects are monstrous. This is my own experience. I hope it helps you. Angel

Angelsings95

I had a double mastectomy and reconstruction and am feeling nervous about returning to work. I will be going back in about a week and a half. Implants look fine it's not my appearance I'm concerned about it's just I don't know if I will have the energy or be able to be my perky self like I used to be. This knocked me for a loop since I have never had a surgery in my life except a C section when my daughter was born. I feel very blessed that the cancer is gone and was only stage 1 and no radiation and no chemo. Maybe I am worrying for nothing and I will be fine.

anniemshe

Blessed.

Dearest Angel,

It’s normal to have some anxiety or worries after all you’ve been through! You are a survivor and you are strong!! I too had never been admitted except for a C section when I had my daughter. But that’s life!! Things don’t work out the way we expect it to. Just take it one step at a time and YES count your blessings it’s stage 1, it gets better and you will slowly get back to being YOU!! 

Hugs and best wishes. God bless

Barb A

My Story

Hi Donna Mae, sorry you've had to join this board, but it's a good place to be for support.

I was diagnosed with wide spread DCIS in the right breast in 2000, age 37. Because it was over half the breast, the oncologist suggested a mastectomy. I only had the right breast removed, and had a tram flap reconstruction. At the time, it seemed like a good idea due to my age. I was smaller then and now have gained weight. The left breast is larger than the reconstructed, so now I have a prostetic to even them out-which is a pain. I didn't have chemo/radiation.

In 2007, I had a recurrance with IDC in the reconstructed breast. I didn't know I also had IDC in 2000. I recommend everyong get their lab reports and review them with their oncologist. Had I done this and knew I had IDC, I would have opted for chemo. It's suspected that a few IDC cells remained from my mastectomy. Anyway, I had a lumpectomy, chemo and radiation. 12 years later, I'm doing well. Just wish I had taken better care of myself and not gained weight. I'm terrible at dieting and exercising.

Knowing what I know now, I would have had a bi-lateral mastectomy with the tram-flap reconstruction. I'd be more careful not to gain weight and waste that tummy tuck I've been lucky that my fiance (in 2000) and now husband has always been my rock, sounding board and supporter.

One can only do what's best for them at the time and not second guess. Don't be afraid to get a second opinion either. I don't know why my oncologist didn't tell me about the IDC. I didn't know enough to get the report myself and question it then. Try to stay positive - I believe it helps.

Barb A

 

Kate_Slater

Right side only

Hi DonnaMae,

I had right side mastectomy last December, and opted not to do reconstruction.  Since surgery is taxing to the body and inherently carries some degree of medical risk, I opted to do the minimum that was deemed medically necessary.  I have no regrets about my decision. 

The healing process from any procedure takes time, and six months after surgery I am still not feeling completely back to normal on the right side chest and arm.  I'm glad I didn't choose to do anything more than waht was needed, because each additional incision would have taken time to heal.  I like to feel as healthy and whole in my body as I can, and extra procedures would have slowed me down a bit more.  Part of what's been tough in my case is that they did have to take a lot of lymph nodes, which means the right arm and shoulder need physical therapy and may never be completely back to normal.

I do experience some sadness and loss looking in the mirror now at my mismatched chest, but it's a sadness I can accept. It's a minor loss in the grand scheme--not one I needed to fight against, and of course I spend very little time looking in the mirror--I'm generally out living my life.  Living with a lopsided chest has not turned out to be a huge issue, really.  Insurance would pay for a prosthesis, but I haven't been motivated to get one yet.  I'm learning what styles of shirts are most flattering to my new figure, and even though it seems pretty obvious to me that the two sides don't match, I find that during appointments at the hospital, medical staff who are meeting me for the first time and reviewing my medical history still ask me questions like, "Let's see, did you get a mastectomy?" or, "Was it the right or left side?" or, "Was it bilateral?"  I guess they are looking at my face and not my chest. I find that I can be just as confident and contented and beautiful with a mismatched chest as I was with a symmetrical one.  My beauty is in my smile and my disposition--no one seems to care about my measurements.  I think they are delighted that I am alive and continue to be part of their lives.

Kate

 

 

finbeck

Chemo or no chemo

I am 72 years old, a widow with 5 grown children and grand children.  I was diagnosed with stage II B breast cancer.  I just a skin saving mastectomy, with sedenary lymph node removal.  The lymph nodes were positive so I have just had my second surgery to remove more axillary nodes.  Now every one is talking about chemo, radiation, and long term hormone therapy as the tumor was estrogen positive.  I am a firm believer in quality over quantity of life.  I have been looking over the side effects of the suggested chemos and hormone therapies.  It seems that for the next year at least there is no living, merely surviving from one treatment to the nest and then there are long term effects that last the rest of your life.  I am not sure at my age that I want to give up the living experience for the surviving.  I would appreciate feed back from those who have had treatments and their side effects

finbeck

Angelsings95 said:

Mastectomy

Hi, Donna Mae, I am 65 and was diagnosed with invasive ductal carcinoma in left breast, stage 1.  I elected to have a double mastectomy with reconstruction since my cousin told me that her aunt had had only one side done and so she had one perky breast and one floppy breast. I wanted both sides to match so that was my decision. This was all recent as my diagnoxis was mid April 2019 and my surgery was May 9th. I had to wait to find out if i needed radiation (did not) and also the results of oncotype which would determine whether or not I needed chemo. I finally got the results yesterday and was told that my oncotype was 26. 25 and under needs no chemo and 26 and above can elect to have it. My oncologist told me that if I did nothing, the chances were 80% that I would never get breast cancer again. He said taking an anti-estrogen pill (minimal side effects) once a day for 5 years raises that by 10% to 90% chance. Taking chemo, which would mean 4 shots every 3 weeks over a 12 week period (each shot would make me feel sick and tired for about a week, and after 2 weeks my hair would fall out), only increases the chances of not getting it again by 3% more. I chose not to take the chemo since it only increases my chances by 3% more, and the side effects are monstrous. This is my own experience. I hope it helps you. Angel

Chemo or no chemo

Thank you Angelsings95,

After reading about your experience, I am feeling better about my feelings not to undergo any further treatments.  Although I seem to be having issues with my oncologist about doing the oncotype testing.  I am going to try to insist on it. 

 

finbeck

 

anniemshe

Side Effects

Hi. I was first diagnosed in 2007 then more recently after almost 10 years of being free had a reoccurrence in 2017 and am now Stage 4 as cancer spread yo

my bones.

I had the surgery to remove my right breast in 2007 and chemo- 6 cycles followed by 25 cycles of radiation then hormones therapy for 5 years. I am blessed as I went through the surgery relatively well. I must admit chemo was tough but radiation n the 5 years of hormone therapy was also smooth. I think that I had lots of support from family members and my close friends. Also having a positive attitude and strong dependence on God.  Now I’m on hormonal therapy again. There are side effects I don’t deny it but the problem is it’s not the same for everyone!! 

I took time off from work for the chemo as I just couldn’t get up and needed a lot of help at that time. But I know of people who had a breeze through chemo. But there are those that had a hard time with all treatments!! 

There are no guarantees, no one solution for all. I can’t tell you to do it OR not to. It’s an individual decision. Talk to your Drs, to nurses that administer the chemo, get a second opinion. Pray about it and I hope you will make the best decision for you. Best wishes and Prayers to you 

 

Sketcher1

finbeck said:

Chemo or no chemo

I am 72 years old, a widow with 5 grown children and grand children.  I was diagnosed with stage II B breast cancer.  I just a skin saving mastectomy, with sedenary lymph node removal.  The lymph nodes were positive so I have just had my second surgery to remove more axillary nodes.  Now every one is talking about chemo, radiation, and long term hormone therapy as the tumor was estrogen positive.  I am a firm believer in quality over quantity of life.  I have been looking over the side effects of the suggested chemos and hormone therapies.  It seems that for the next year at least there is no living, merely surviving from one treatment to the nest and then there are long term effects that last the rest of your life.  I am not sure at my age that I want to give up the living experience for the surviving.  I would appreciate feed back from those who have had treatments and their side effects

Chemo or no chemo

I'm also 72 and questioned how much treatment I was prepared to do at this stage in life.  They originally suggested 4 1/2 months of chemo, 3 1/2 weeks of radiation and 5 years of Letrozole after my lumpectomy.  A genetic test was done (Im Canadian) and chemo would only lessen my chance of recurrence by less than 1% so it was taken off the table. That was a major relief for me.  I've taken Letrozole for 2 months and have had several small side effects.....all manageable and they just come and go.  I power walk 40 mins a day to help my muscles and bones and get Acupuncture to help me with any mood swings and discomfort.  My thought is if side effects get too bad with Letrozole, I can have my medication changed or make a decision to stop taking it.  At least I will have tried. 

I also considered not doing radiation and just take Letrozole but my family doctor convinced me to take the treatment provided as cancer does recur and I will have known I did everything I could to stop it.   I keep in mind that many ladies who have gone through all the treatment and have gone on with their lives without major setbacks are probably no longer posting.

StinsonGirl

tryingtostaypositive said:

New to site

I was diagnosed with triple negative breast cancer in March.  I recently finished my 4th and last round of AC chemo and will start my 12 weeks of Taxol next week.  I have done well and am blessed but for some reason I am scared to death to start the Taxol.  They say it is not as hard as the AC.  I guess the weekly regimen and side effects are what has me so scared.  I work full time and am concerned about the way the chemo will make me feel without much of a recovery time.

 

Taxol

I had the AC chemo too and the taxol for phase 2 of the treatment. (Chemo was finished in January of 2016) My oncologist told me ahead of time that halfway through the taxol I would wish it over as it would flatten me with weakness and fatigue.  I had neither.  I walked my dog (rather he walked me. He's a Wheaten Terrier and Terrier people know what that means!) every day and I never lost my energy.  My only side effect with the Taxol hit me half way through the treatment and that was some peripheral neuropathy in the third and fourth toes of my feet.  I went to an acupuncturist immediately and he kept it from spreading. Most of the time now I'm not aware of the neuropathy. Envision yourself powering through it like a linebacker for the L.A. Rams and know you have a cheering section. Me!

finbeck

finbeck said:

Chemo or no chemo

I am 72 years old, a widow with 5 grown children and grand children.  I was diagnosed with stage II B breast cancer.  I just a skin saving mastectomy, with sedenary lymph node removal.  The lymph nodes were positive so I have just had my second surgery to remove more axillary nodes.  Now every one is talking about chemo, radiation, and long term hormone therapy as the tumor was estrogen positive.  I am a firm believer in quality over quantity of life.  I have been looking over the side effects of the suggested chemos and hormone therapies.  It seems that for the next year at least there is no living, merely surviving from one treatment to the nest and then there are long term effects that last the rest of your life.  I am not sure at my age that I want to give up the living experience for the surviving.  I would appreciate feed back from those who have had treatments and their side effects

Chemo or no chemo

I had to have a second surgery to remove potentially positive lymph nodes.   I just got the results and all were negative for cancer.  This reinforces my decision not to do chemo.  I am 90% sure I will not do the hormone therapy.  I am hoopeing to convince my doctor to monitor my hormone levels and when I recover from the second surgery, loose weight, exercise, and get healtheir.  

Bevoir

Diagnosed with breast cancer and I’m absolutely terrified

Hello there,

I’m 48 years old and found out I have breast cancer on June 26th.  All I know right now is that it is an invasive ductal carcinoma in my right breast.  I had a mammogram, ultrasound, and biopsy on Mon.  I have my consultation with the cancer team next Wednesday to discuss treatment, etc. And I’m absolutely terrified to my core.

Ever since that fateful phonecall on Wednesday I’ve been in a high state of anxity - lots of tears, tense, nauseous, no appetite and masses of anxiety.  Its like being on a roller coaster of emotion, up and down from one minute to the next, with moments of calm and then utter panic.  The fear of the unknown and the waiting is brutal.  I’m so gratful to find this forum as I hope talking to others will help with my overwhelming fear.

I’d be so thankful for any advice on dealing with the anxiety.  My husband has been amazing, along with the few friends I’ve told, but I’m not doing so great.

Thanks in advance for any support.

Cheers,

Bevoir 

Bevoir

Sorry

Sorry, DonnaMae for posting my new topic post on your thread.  I was in the wrong place.

I’m also sorry to hear about your recent diagnosis.  Hope to connect & chat with you around the forum.

Take care 

dreaming

I was diagnosed with 2 breast

I was diagnosed with 2 breast cancers ,one like you, 26 years ago, I wanted the most agressive treatment that I could get, had a mastectomy, and chemo.

No high risk for breast cancer, like 80% of diagnosed women.

A very good follow up , joined a support group, made sure to be positive and removed negative influence in my life.

I was in my early 40 when diagnosed, not many treatments to choose from.

We all react differently to the diagnosis, but it is important that you put yourself first now, allow help from others, only listen to your doctor, get a second opinion if you have doubts,  make lists of questions.

You are not alone.