Hi all Well it has been a long time since I was on this site, I did come on & read a lot, which helped me a lot. I made it through Chemo, had some time spent in Hospital, as the veins in my arm could not stand it any more they had to use my feet (ouch) but we finally got there, I am one week finished my radiation, now I'm feeling very alone and lost, & scared that the cancer might be some where else, I did ask about a pet scan but was told they don't do them for breast cancer, how am I'm I going to find some peace of mind. that there is no cancer learking somewhere.am I being parnoid? I'm very thankfull that I have finished all the treatments & very grateful for all the support I have received from my wonderful family & friends, just wanting to know if anyone else out there has felt the same after finishing. Jenny

Hi VivW Many thanks for your reply, WOW you have been put through the ringer, I had my right Breast removed, after mammograms & ultrasound came back no concerning abnormality are demonstrated, lucky for me my Doctor still sent me for a Fine needle bio,( bingo,) Grade 3 Invasive Ductal Carcinoma, Triple Negative. so now I'm finished with Chemo, Radiation etc, I'm having some time to heal then in Feb after a much needed hoilday, I'm going to have my left breast removed as I have a number of cycts which is what I had in my right breast, so for peace of mind, I'm doing the right thing even my Doctors agree. Still I will worry but I guess. I'm lucky to have finished. Talk soon Jenny

Sorry to hear your oncologist didn't listen to your preferences. It's such a personal choice that I think we really have to be comfortable that we are doing the right thing for ourselves but of course it can be hard to argue against the authority of the medical profession. I think you're right in saying we should get a second opinion if we're not comfortable. I was diagnosed in April 2012 at age 46. I had a 27mm estrogen and progesterone +ve tumor, stage 2, grade 3. plus some DCIS. I was offered the option of a mastectomy but the idea totally freaked me out to be honest so I just had the lump removed and a sentinal node biopsy. (No node involvement thank goodness). I had 4 rounds of chemo, then 6 weeks of radiation and I'm now on tamoxifen for another 4.5 years. My oncologist has suggested switching to an aromatase inhibitor (like aramidex) when my menopausal status is confirmed (haven't had a period since starting tamoxifen) but I'm reluctant to change because I've read that a lot of women have unpleasant side effects on them ie severe Hi joint pain and stiffness and no libido. Tamoxifen is interfering with my sleep a bit but apart from that I'm okay with it. My breasts are now slightly uneven and I have seen a cosmetic surgeon about having the left breast (a D) reduced a little to match the right one which is probably a C now. I'm a public patient so who knows how long I will have to wait for that. But i suppose I'm lucky in that the difference isn't too noticable. I hope you can get the result you want regarding your right breast. It seems a lot of women like yourself feel safer with a mastectomy. There are no easy answers with any of this stuff. Good luck.

Wow, thanks for those replies. Jen sounds like your on top of it. Jandy, tamoxifen hasn't stopped my periods, have had 2 cycles since starting on it with side effects kicking in with 2nd period. Numb left foot which is ok, and itchy down below, am seeking my onco on Monday to see about that. I can put up with it until early october. Shows that my hormones are going strong, my sister is still regular at 54., mum was the same. This is why having ovaries out, cannot wait. alll the best VivW

Hi Viv, my story is so like yours. My mammograms, I had 2 of them 3 months apart, were clear, but an ultrasound picked up what they thought was a harmless cyst. The pathology showed cancer and it was supposedly 4mm in size. I had a lumpectomy and was going to have radiotherapy. The tumour pathology following the surgery showed a 21mm grade 3 invasive ductal cancer. More surgery was recommended, and with some thought and research, I decided to have a mastectomy instead, and also 10 more nodes removed. These were clear, but I still needed chemo. After chemo I decided to have the second breast off, as I was sure I would have trouble believing a mammogram again. This is now all completed with reconstruction, and I am very happy with my decision. Remember, this is your body and you get to choose what happens to it. My surgeon always said that he would happily remove the other breast if I wanted, and so he did. I went as a private patient. All the best, love Chris xx

Hi Jandy23 Many thanks to the girls who replyed to my post, after reading all of them, I feel very greatfull that I did not do that bad, when I read some of the mess up some of the girls have had it makes my blood boil, why in this day & age are mistakes still occuring. I myself have no faith in mammograms anymore, & in furture until I can have my remaining breast removed I'm going to insist on a ultrasound as well. I have had a long talk to myself & will not worry about what might come, I'm just thankful that I doing OK. This site sure is a wake up & take notice of other things besides myself, so I'm taking that on board, & will get on with getting my life back in order. So a big thankyou to all the members of this web site. Love to you all Jenny

No What | BCNA Online Network

16 Replies

Chris
Member
12 years ago
Hi Julia, why are there no more check ups? I was diagnosed in November 2010, and have only just this past year moved on to yearly check ups. I see my breast surgeon once a year in November, and my Oncologist once a year in May. This gives me a check up each 6 months, and I have a bone mineral density scan, ( I am on Femara and it can cause bone loss ), and an ultrasound. Even though I have had a double mastectomy and reconstruction, the ultrasound gives me peace of mind. I did go privately, but only Medicare gives a rebate for the doctors, not my private fund. Love Chris xx
Jenw
Member
12 years ago
Hi

Just reading your post, I'm 62, well past menopause, yet I had 6 round of Chemo Fec 100 for 3 rounds then 3 rounds of Taxotere. then 3 weeks of Radiation, which I have now finished it's been two months now, starting to feel like my old self , except missing a right Boob, I'm having the left one off next Janurary, my Cancer was Tri ple Negative Invasive Ductal Carcinoma, 2.7 cm. mine had spread into the chest muscle so that is why I had the Radiation, I can't understand why they told you that you did not need the Chemo, anyway lucky you, as I would not go down that road again, it is a once only trip, hence why I have elected to have the second mastectomy.. I'm a 16 dd, so you can imagine now I have the very lop sided thing going on, even wtih the bra insert. My Journey started Last November. so anyone else who reads this & is just starting, yes there is a light at the end of the tunnel. Love Jenny
Julia44
Member
12 years ago
Hi Jen,

I am also concerned about not being offered any further checks. I have had double mastectomy now but still wonder all the time if there's any problems developing anywhere else in my body.

Julia
Rubes
Member
12 years ago
Hi, I have been losing my toenails and now all my fingernails are about to come off, they are a mess! Toes not sore but fingers are, is anyone else going through this ? I had 12 weeks of Taxatere but finished almost 8 weeks ago. What a mess , Rubes
Rubes
Member
12 years ago
Hi, I have been losing my toenails and now all my fingernails are about to come off, they are a mess! Toes not sore but fingers are, is anyone else going through this ? I had 12 weeks of Taxatere but finished almost 8 weeks ago. What a mess , Rubes
Kateb
Member
12 years ago
Viv you really need to think about ALL the repercussions of a mastectomy. I'm comfortable with no breasts but mine were large, heavy and attracted too much attention.

Most importantly I avoided radiation as there was NO breast tissue to radiate. Got out of chemo because I was well past menopause - they only offered chemo to post menopausal women in more recent years. So only dealing with the Femara, and that's quite enough thank you. How you others cope with the lot is beyond me - you are incredibally brave strong women! I am most impressed ...

Others react to the loss of what they deem their femininity. I've had a few skin cancers cut out over the years and I've always claimed I'd rather be alive and ugly than beautiful and dead ... Yes, dramatic extreme but you do have OPTIONS!

Please Get in touch with a nurse but your own family can help you make the decision if they are not too emotional? Ultimately the choice is yours, follow your heart. Best of luck with it all, love k
Kateb
Member
12 years ago
Hi Chris, Much Thanks for your encouraging words - guess I've had more symptoms than I listed! But you give me hope - I was thinking to stop the Femara if symptoms hadn't eased at eighteen months. Now I'm thinking I should try for two years if your symptoms are easing. Ten years sounds a long time? My onc. Said five, will be doing well if I stay on it for three. We do have choices. I had menopause some years before diagnosis and my skin wasn't this dry - so must be the drug. Take care, k
VivW
Member
12 years ago
hi Julia,

Sorry did I leave out the my cancer was Invasive ductral carcinoma with DCIS.

The thought of tram flap surgery terrifies me. How did it all go for you?

Thanks for the advice of your surgeons, I am in rural Victoria

VivW
VivW
Member
12 years ago
hi Julia,

Sorry did I leave out the my cancer was Invasive ductral carcinoma with DCIS.

The thought of tram flap surgery terrifies me. How did it all go for you?

Thanks for the advice of your surgeons, I am in rural Victoria

VivW
Chris
Member
12 years ago
Hi Kate, I am on Femara, and most of the awful side effects have now settled down after 18 months. This month it is 2 years since I started taking this drug. The first few months were not an issue, but then the side effects kicked in. I felt like an old lady with stiff ankles, hips, shoulders and hands and fingers. I found that large doses of fish oil really helped, and after awhile I no longer hobbled when getting up, and the pain soon disappeared. My wrist tendons and fingers have been very painful for the last 9 months, and now this too is disappearing. Even my trigger fingers are not as bad as they were, with now only one of them triggering occasionally instead of 4, and my hand strength is also improving. My oncologist talks about me being on this drug for maybe 10 years, so it is good news that the side effects are lessening. My skin is still dry, but menopause also dries the skin, so that might have happened without the Femara. I hope your side effects also lessen with time. Love Chris xx