Can't get off cancer rollercoaster

thegoodfight

Just when you think you are on the other side (had surgeries, chemo, radiation), your hair has come back and the sun is shining.....................WHAM!!!    That describes where I am today after my three month recheck with onco today.  Let me first say that he has since called me back and after talking with breast surgeon and radiation onc he is not as alarmed as he appeared to be at my visit today.

A few months ago I noticed a swelling near my clavicle on the same side as my cancer.  After exams by the rad onc, the breast surgeon and my internist, we decided the only way to be sure is to do a CT even though they all thought it was actually just my bone structure on that side.  The CT showed  the clavicle area was clear although it did show some other little things at that time in the chest wall and lung.

I faxed a copy to my med onc (who is who I saw today) and at that time in a phone call he assured me it was nothing to worry about.  That was then.  I had another CT last week and it too showed nothing, yet when he saw the swelling today he sort of overreacted. 

I am scheduled to see my breast surgeon tomorrow anyway, but now  I will have a mammo in the morning before I see him.  Then they will all consult.  My gut says this is nothing and I think maybe it has always been this way, I just was not always as observant as I am now..............sort of a curse in many ways.

Anyway, my point of this post, even though I believe it will all prove to be nothing, is that I got a message today loud and clear.  Once you have cancer, you have cancer.  Just no getting away from that fact.  I know many people live many, many years and NEVER have a recurrance (that's my plan by the way) but the nasty truth is you could.  And worse yet, it could be metasisis...............and we all know that means stage IV.

So just stay vigilant and accept the fact that when "anything" unusual shows up you will begin an investigative process.  There is no longer the luxury of let's wait and see how it is in a few months.

So yes, let's all stay positive and let's all take care of ourselves, but do not let your guard down and always question anything that is questionable.

Caren

Hattie

I'm hoping for good news for you.  

Sounds like you are taking good care of yourself.  Good.  Also remember, it could be something else or nothing at all.  Paying attention is good, and so is investigation.  Worry is not. 

Hang in there.

Take care,

--Hattie 

nelia48

Caren, I'm hearing you loud and clear!  I do hope your appointment goes well tomorrow and that the consults between the drs. proves to have a positive ending!!!!!  I know what you mean about the fact that you always have cancer.  My oncologist dropped the bomb on me, too, this week.  Told me to face the fact that it "most likely" will return and that I had to keep the port in forever. So now for me,it's not "if"  but rather "when."  Bummer!!!!!

susan_CNY

good thinking Caren!

bettysgirl

Caren- I hope your appt goes well.

Like nelia my onco wants to leave the port in for "at least" two years...Kind of makes you hear the jeopardy music in the background. Hard to take your mind off of the big C when the port is a daily reminder. I think I would feel much better if they told me they were comfortable taking it out. I try to be positive but people who have not been where we are do not realize that what may be a normal ache or pain to them can make a survivor very nervous.

dlb823

Hi, Caren ~  Yes, I think it's a shock we all go through when we realize our docs are now very quick to consider the most dreaded possibility, and no longer brush off anything as insignificant.  I've been through it twice since my tx, and both times it really threw me off balance for a few days.  All those old, "OMG this cannot be happening," feelings resurface, and the world suddenly beats to the bc drummer again.  I think most women here know exactly what you're going through.

But I also think it gets better the further away from treatment you get, and there are long stretches of time when bc isn't the overriding thought in our lives.  I've also found it really helpful to be very proactive re. diet & exercise -- two things that I can control that have been shown to significantly reduce our risk of a recurrence. 

Caren, I will pray that this scare will check out to be just that, and that you'll soon have peace of mind again.  Thinking of you  ~   Deanna

thegoodfight

As always dear ladies thanks for your support.  I have to say I am not really worried about this because I think it is just my body and bone structure, but I will follow procedure and check it out.  The message I got from this is sort of a reality check.  I just celebrated one year and to tell you the truth I was just getting comfortable with the new me, even the new hairdo and the new eye glasses................love em.  I have even started to say thank you when someone compliments my hair instead of "explaining" my new look.  I finally was beginning to believe that I have a very good chance of a long bright future, knowing I did and am doing everything in my power to make that happen.  I still believe that.   But yesterday was something that needed to happen, I needed to be reminded that I do have cancer.  Not to dwell on it, but just to be vigilant in my life style and be very aware of my physical and mental health.  We must never forget and become complacent, life is differentl.  It is still wonderful, and even better in many ways, but forever different.  I wanted to pass that messasge on.

I started my day today with a five and half mile walk.  I feel great and am ready to face the day.  I  will try to come back tonight with some results of today's tests and dr. visits.

Have a wonderful day.........................Caren

thegoodfight

Okay, I will start by saying I think it is a GREAT DAY!!   My mammo was clear, and the breast surgeon feels there is nothing more to do at this time.  If the clavicle was a problem, and he doesn't think so, the next step would be a bone biopsy which is painful and involved and he does not think it is warranted.  There are no other symptoms that add up.

Here's the rough part of the day, and I mean rough.  My oncologist asked me to call him when I finished with my other appts today which I did.  He kept me on the phone for a very long time and is really putting pressure on me NOW to have a double mastectomy.  He did say last year that he felt I should go that route to take all the additional ongoing stress away for recurrance and future cancers.  But, after consultations with the radiation onc and my second opinion onc at Moffitt Cancer Center he agreed that going the chemo/radiation route was just as effective.

Now he is saying yes, that is true for the cancer you have already had but not for any future cancer that could be avoided by the mastectomy.  I had two cancer sites in the same breast and he feels my breasts make cancer and it will probably happen again.  He argues that testing every six months is no picnic and they pick up things that don't matter and sometimes miss the cancer that might be there.  He wants my husband and I to come in for a long discussion so he can make us understand.  I do understand, but my question is why wasn't he more emphatic a year ago?  I could have avoided 35 rad treatments, and........................I would be done and healed by now.

I am struggling with this.  I was just starting to feel good about my future, thinking that maybe I have been through the worst.  Yikes, how can all this angst be coming my way now? 

We will go have this meeting , but I am not rushing to the OR.  This is a lot to think about and at the very least,I will make an appt to see the onc up at Moffitt for a second opinion.

I guess it just doesn't get easier.......................

Caren

dlb823

Caren ~  A bilateral mx when you have no sign of bc in the other breast?  I understand that this may be the choice of some women, but I don't think oncs normally come up with these suggestions without specific reasons.  Was it the experience you just had this week, or a strong family history, or just what is causing this degree of concern from him?  I could be way off base, but it almost sounds like a knee-jerk reaction from him, and I'm wondering if he's maybe had another patient with a recent recurrence or some such thing that would cause him to give that sort of advice to you now?  You're absolutely right in not wanting to be rushed into something like that, and I'd certainly plan to get a second opinion before even considering it.    Deanna

kellyless

SECOND OPINION TIME FOR SURE!  Start rooting around for another highly recommended oncologist & surgical oncologist - maybe at another facility? - and get them to review your entire file, have appts with you and give you a second opinion.  Without a new cancer diagnosis I can't at all understand that recommendation.  Second opinions save lives every day!

Denali

Caren, I'd defenitely go for a 2nd opinion.  My diagnosis was similar to yours 3.5 cm tumor and no positive nodes.  With IDC & DCIS in the right breast I decided on a mastectomy of the breast instead of a lumpectomy.  After chemo, I was worrying about recurrence and asked my oncologist and surgeon if I should have a 2nd mastectomy for preventive purposes.  BOTH said no as there's no need.