The longest month of my life

charusa

While taking a shower I found the lump on my breast and further self examination I seen my bulging underarm. Went to my primary, then had mammogram, sonogram, then a biopsy. Back to primary for results. Invasive ductal carcinoma, total Nottingham score of 8 (?), grade III. The mass is 2cm and is triple negative (ER-/PR-/HER2-). My lymph nodes were not biopsied but are suspicious. Saw surgeon yesterday who recommends mastectomy and removal of the lymph nodes and told me I would need to see oncologist for chemo and further treatment. Told me if I wanted reconstruction it was possible to do at the same time as the mastectomy. I just turned 59 and I am post-menopausal. I have panic/anxiety disorder which I take meds for but is now out of control again. Don't know where to start with questions but so glad I found this site. I am ok with the mastectomy even without reconstruction but I do have a slight heart condition somewhat like A-fib and what I have read about chemo this may be a problem. I just got the results of the special strains today and now from what I gather in what I have read is that triple negative results are about the worst it can get. I want to fight this and be prepared for what is going to happen...I am scared now...

mcgis

Hi Charusa. I'm really sorry you are having to go through this and had to join this site. I hope for the best for you. You will get lots of support and answers here.

wyo

Charusa-

welcome to our world. we are so glad you found us. I think the increase in your panic and anxiety are justified given you have such a great deal of information to process and decisions to make. Lets say its temporary while you adjust to this new place you are in. Being scared is normal- I wonder who is not scared when faced with all this.

There are going to be people here that will be able to share their experiences with chemo and cardiac conditions and your care team will want to know every little thing about your health history so tell it all.

There are forums on here for triple negative ladies and hundreds of years of experience dealing with the roller-coaster that is breast cancer. This is the best place for information, support and just being with people who are also dealing with breast cancer.

farmerlucy

charusa - The initial diagnosis IS terrifying. I'm so sorry you have to go thru this. I had some real issues with anxiety and depression, meds and counseling help me get through it. Take it one step at a time. Things are going to be really scary for a bit, once your treatment plan is in place it starts to get a little easier. I have three friends who had triple neg BC. One is thirty years out, one is 17 years out, the other is 7 years out. Come back here often for love and support.

charusa

Thank you for all the replies, it feels better knowing someone out there is not only listening but really understands. My family is being supportive and just as scared as I am so I don't want to verbalize too many of my fears with them, instead they see my smile and determination that I will fight.

edwards750

And you will fight charusa just like we are and have. Don't know about triple negative cases but as farmer said there are cases where women have lived a long time after DX. Breast cancer is not the death sentence anymore. While it isn't curable, it is treatable. This is a great forum to bring your questions. Trust me it was my lifeline when I was DX. We do our best to keep our game faces on so we don't scare our loved ones so we have to take our fears somewhere - and this is the place. I was blessed to have a family member and friends who had just gone through it so I looked to them to allay my fears. One of my friends is a RN at St. Jude so she was certainly as close to an expert as I could get. She had a double MX herself. You will be okay. The fear factor will be with you awhile but it does get better. You have so many yet unanswered questions. Once you go through the process you will know what your options are. Keep the faith. diane

juneping

charusa,

i am so sorry and i hope your team of specialists will come up with a plan that fits your health condition. hugs to you....

ziggypop

charusa - I am going to disagree with one of the posters above who said that breast cancer is not 'curable'. Stage IV breast cancer (BC which has spread to distant locations in the body) is not curable, but it is treatable. All of the stages before stage four are both treatable and curable (just not 100% of the time - but neither is the flu). Of course you are scared, this initial time period is the worst for anxiety - almost everybody says that once they get into treatment they feel better - because they feel like something is being done. Come here and ask any questions you have (there's a triple negative group, too), but you might want to just take one step at a time & not get ahead of yourself about what everything means. In the meantime, eat a lot for Thanksgiving, take whatever anti-anxiety meds you need to, and remember you have a huge support group out her. Many, many hugs.

ziggypop

I just wanted to make clear that I don't think that any doctor should tell anybody they are 'cured' - because they can't ever know that, anybody could have cancer cells that remain after treatment that can't be picked up on scans. What we do know is that many more people who are treated never have a recurrence, live normal life spans and do not die of breast cancer than if they were diagnosed and not treated. That to me means the treatments cure the disease in many instances.

lintrollerderby

Hi charusa,

I'm sorry about your results. I am from Ocala (born and raised, but recently moved out of state). I was diagnosed with Triple Negative in 2011. Since you are in St. Pete, go to Moffitt. I had treatment there and they were spectacular. Triple Negative is a tough diagnosis, but it really is not necessarily a death sentence. As for your heart, I know Adriamycin can sometimes cause heart damage, but not all Triple Negatives get that chemo--I didn't. Moffitt should be your first call tomorrow morning.

Best wishes!

edwards750

ziggypop - don't agree about using the term "cured" and apparently neither does my doctor/oncologist. While it is rare cancer does come back despite everything that can be done is done even in early stage cancers so how can they be cured then? Just saying. I would like to believe I am cured since I had early stage BC with Grade 1, lumpectomy and 33 RADS treatments. Currently on tamoxifen. The doctors own admissions are they cant be 100% sure there isn't a stray cell around. I know you didn't say everyone because they wouldn't be true I just don't think of myself as cured; is there a timetable when you can safely say that?

ziggypop

edwards750, maybe I didn't say it well, I was saying I do NOT think that doctors should ever tell patients that they are 'cured'. They can say things like 'no evidence of disease' - but 'cured' is the wrong thing to say.

That said, breast cancer (as long as it is not stage 4) can and is 'cured' very often cured by treatments. If you take 2 groups of 1000 women with my type of cancer and they are not treated, one group who is treated with surgery, chemo, radiation, and, SERMs or AIs, the women in the untreated group will all die of BC unless something else gets them first. In the group that receives the treatment, 350 - 450 of them will die of breast cancer within 25 years, and maybe another 50 of them will after that. The rest will not die of breast cancer because the treatments 'cured' them. (I'm stage III, with significant node involvement so my risk is high, but I may already be 'cured' - there's just no way of knowing - I have no evidence of disease - but there could certainly be some cancer cells somewhere in my body.

Morwenna

Hi Charusa,

I had a triple negative diagnosis also. But the point I feel about the term "triple negative" is that it is not an absolute. It simply describes the absence of hormone and her_2 receptors in the tumour, i.e. it tells you what you DON'T have.

There are subtypes of triple negative being discovered, but many (most??) have been found to be highly responsive to chemotherapy, which is the mainstay of treatment as well as surgery +/- radiation therapy. You will find many examples of ladies who have NOT had a recurrence or spread of their "triple negative" cancer, even after many years, and the risk of it happening drops sharply after the initial 3-5 years.

If you are having chemo (especially Adriamycin/Doxyrubicin), I think the routine is to have MUGA or echo heart scan to make sure there is no underlying issue, and you are carefully monitored.

As for recon .... its a personal decision ..... but as you suffer anxiety issues you might find it easier to have an immediate recon if being breastless is likely to be a huge issue for you. It's a toughie, but talk to your doctors. I know most women are reported to be very happy that they had immediate reconstruction.

I didn't have that option, and in fact I think I don't mind too much the flat side ..... It's the other big boob upsets me!!! I'm seeing a PS I'm January to see if autologous recon is an option, otherwise I'm pretty determined to just have a prophylactic Mx and be symmetrical at least!

Sorry, wondered off there!

Anyway, as others have said. You will almost certainly feel 100% better when you have a plan in place and start treatment.

Good luck!!

charusa

Thank you all for your replies and reassurances. I saw my oncologist yesterday and have a new plan. Chemo first, then surgery then radiation. I have a bunch of appointments before my first chemo date of Dec. 12. Have to have a breast MRI, Pet/cat scan, port placement and a muga scan, The first 8 rounds of chemo are the A/C combo followed by Taxol. I am of course frantic, it has become very real to me and now I will be waiting on even more results....is there ever any good news???

smerf

Hi charusa,

So sorry you are going through this, but wanted to let you know you can do it! I too had a 2cm tumor which was triple neg, and I was 60 at the time. Doctors were surprised, as this type tends to be diagnosed more often in younger women.  I did not have nodes involved, but one oncologist staged me as  a three, and the second opinion doc staged me at 2. I had surgery first, followed by the same chemo drugs planned for you. Four doses of a/c, and then twelve weekly doses of taxol.Lastly, I had seven weeks of radiation, and here I am almost 8 years later NED. {no evedence of disease}

Your doctor can substitute another drug for the adriamycin if your muga shows you shouldn't have it. Your onc seems to be on top of the problem, and you are in good hands. I know how it feels in the beginning, but once you get started on treatment, you will feel more in control.

Hugs!

charusa

Thanks smerf for your response...just felt so calming and congrats to you on your recovery. I just turned 59 in October and although I have smoked almost all my life breast ca came as a shock...if they said lung ca I would have known it was my own doing. I just came back from an appointment for a breast MRI which I bailed on. I have panic/anxiety disorder and even before being diagnosed with that I was afraid of closed in spaces. I got on the table but was back out in 5 minutes...I hope that test wasn't so very important since they told me they are no open MRI's for breast and I was already medicated. Still got to do the Pet/cat scan, the port placement and the muga scan all before next Thursday. Seems never ending but hearing about others getting through it fine is a great inspiration.

Hugs

smerf

Hi charusa,

I'm busy running around like a chicken with it's head cut off...trying to get ready to leave Sunday for vacation. There is a lot of life after cancer treatment! Though my car and furnace broke down this week, so I am being tried.

If you cannot tolerate the MRI, they will have to do without it. Maybe they could try a different medication? I haven't had breast MRI, as it was too new at my dx. I have had lumbar spine though, and I kept my eyes closed. Pretty claustrophobic for me, but I really wanted to know the source of my back pain.

Be assured that you did not do anything to cause this cancer. Don't beat yourself up, just move forward with treatment. I just reasoned that everyone gets something, so this is what I got.

There are a lot of tips on this site to help you get through tx, and there is almost always someone who will come on and tell you how they handled a specific problem. I have made many friends here, and some of us in Illinois have gotten to know each other in person. We meet for lunch or dinner, and have a great time. You'll get there in time.

Keep in touch, there are many caring women here.

charusa

Sorry to hear about your car and furnace but hope you do get to enjoy your vacation! Getting myself psyched up in a positive way for the Pet/cat scan tomorrow and I am determined to make it through that one. It is great that you got a local group for support. So much to do before next Thursday but I think Saturday is going to be a me day and just go do something fun...and nothing cancer related...I hope a few weeks from now, a few months from now and a few years from now I will be able to help the next sister through all of this and yet wish there would be no reason to.

smerf

Not to worry, everything is taken care of! Though I think my 99 taurus is on its way out.

I hope you made it through your tests, and now you're having a nice Saturday out treating yourself. You will be helping someone else through this before you know it.

I'm leaving for South Africa tomorrow, and probably wont be able to check in here while I'm gone, but I will be thinking of you. I just kept thinking about so many, even little children who get through it, and that gave me the courage i needed. I don't like to be outdone!

Gentle hugs to you from your also triple negative sister.

 

charusa

Yes smerf, I got through the pet/cat scan just fine. Took an extra xanax and my tech was great. Today I went out and bought some pink ribbon and a couple of decorations. I don't want to take out all the Christmas stuff this year since I won't have much help taking it all down and putting it away. I have a small white tree and we decorated it with some copper colored balls, pink beads, pink ribbons and a pink star!!! So it was a fun day. Monday and Tuesday is port placement and Muga scan then Thursday chemo so I am really trying to enjoy this weekend. Have a safe journey my friend, I will miss you. When will you be back? Many blessings my sister and safe travels!!!

smerf

I'm so glad you got through th pet/ct scan so well. Your tree sounds beautiful! I will have the chance this year to help decorate the tree in SA. Wonder if they have any different traditions.

I wish you the best of luck with your first chemo, and trust I will be thinking of you. just don't know about the computer situation in Kruger national Park, which is where I'll be then. There are many helpful hints to get through chemo on some of the other threads. 

Do enjoy your days ahead, and then plan on a few days of rest after your chemo. I don't know if you plan to go to work, but many people I know did that. I wasn't working anymore, so it wasn't an issue for me. I'll think of you, and I return on dec. 27th, and I'll check in then.