Bilateral Breast Cancer

Dancefan

Hi to peacetoallcuzweneedit and legogirl

Thanks for your replies. I saw my own doctor today who was very understanding and has given me diazepam as a preference to Ativan which I asked for but she thought diazepam would be more useful as it would help me sleep. She has agreed to refer me to a specialist cancer hospital about 40 miles away since I am anxious that I don't want to wait until possibly mid November for my surgery in my home town.. The specialist hospital have to see me within a fortnight. I would be really interested when you post any information you find out from your investigations peacetoallcuzweneedit. Getting a second and preferably 3 or 4 sounds the best way to proceed since the doctors may see it from different perspectives. Did they differ much on which treatments etc they advocated for you?

For everyone who has replied thanks for your encouragement, offers of advice and positive words and I will post and let you know what St Barts hospital say when I see them.

Best wishes Lisa

Jazzygirl

HopeLisa- the more information you get, the better you will feel about any treatment choices you will need to make. Glad to hear you are going to a hospital that can focus more on specialized care. I went out of state for some of my cancer treatment here in the US.

Peace- my sister had her cancer treatment at City of Hope and had excellent care. Good luck with your apt there!

Peacetoallcuzweneedit

Thanks Jazz!!! I have used City of Hope for my second opinions for the surgery and now treatments. In addition to the breast cancer, I was also diagnosed with cervical cancer in situ about 5 days after my breast cancer diagnosis.....yeah that was a really awesome week.....:/ ( god I was a mess) I am figuring it all out...no other choice.

HopeLisa- my opinions for the breast cancer treatment have all been the same so far....it is my personality type that is trying to accept the answers, which is no chemo no rads, no hormonal. Now that I have a hysterectomy scheduled, I am wondering if hormonal therapy will be recommended. My little sis passed of carcinosarcoma of the uterus (very very aggressive cancer) which is why Tamox is not recommended for me currently...but the size of my IDC is typically "no further treatment after double mx) The benefit to risks does not support using Tamoxifen...however that was considering my sister's cancer...so it will be another talking point at City of Hope.

Jazzygirl

Peace- first of all, let me say I am very sorry about the loss of your younger sister, friend. And also sorry you are dealing with two cancer dx at the same time.

I had a ruptured appendix the week of my bc diagnosis, and ended up with open addominal surgery and a full hysterectomy. They thought I had ovarian too at the same time, but it was a huge abyss that showed up on a CT scan from the ruptured appendix that caught most of the infection. The CT scan came with the bc diagnosis, but I had been pretty sick with GI stuff no one could figure out. The bc dx triggered the scan which found the other (and probably saved my life); an acute and chronic life threatening situation all at once. I got through the abdominal stuff first (much harder) and went on to get the bc taken care of after (lumpectomy, rads, AIs).

That was all five years ago around this time, and here to tell you that you can get through this. It was so overwhelming at the time, and did not think I was going to get through it, but I did and so will you!

Even with the hysterectomy, I have still been on five years of the aromatase inhibitors with bc treatment (will be done next March). Estrogen is created in the body beyond the ovaries, so you may get recommended for that on top of the hysterectomy. You should talk to them about the AIs if they do recommend something, given the family history.

These back to back surgeries/treatments are really hard to get your head around, so just take it one step/treatment at a time and be sure to heal before you go on from one the next.

Gully

Hopelisa so sad you had to join the bbc club. As you can see from my stats below I am almost five years out from diagnosis and doing well. My second cancer was found after mastectomy done after a MRI suggested involvement. A negative biopsy and negative US made it the preventative removal of the breast that turned out to in the end house a second IDC. I was 45 at the time of dx so treatment was based on the "worst side" Good luck and know that you can do this!

Dancefan

Hi Gully

Thanks for your message. It's really good to hear you are five years out and doing well. It's alsoencouraging to hear the treatments are doable. I have just started chemo on 15th December and was fine the first week but upset stomach and very tired last couple of days but hopefully will resolve before the next round on 5th January.

It was really fortunate you had surgery on the other breast. It just shows how the imaging can miss things.

I was wondering if anyone had issues with blood pressure readings taken on the calf? I have been told I can't have blood pressure readings taken on my arm because of lymph node surgery and lymphoedema risk and the readings particularly diastolic were so high lowest diastolic 96 of four readings on calf. The Hospital wouldn't give me herceptin unless diastolic below 85 so I just got the chemo on 15/12 and they have put me on beta blockers low dose.

I didn't have blood pressure issues before diagnosis and I think it is mostly attributable to anxiety and taking the readings on the calf. At home I measure about 62 on the calf lying down but once I am sitting up with leg stretched out with foot supported on another chair in front of me the diastolic at home reads 20 to 30 points higher. Has anyone else had problems with blood pressure readings on the leg ? The hospital will not take the blood pressure lying down but sitting upright with the leg stretched out and foot supported on another chair directly in front. It seems to be causing much higher readings. Anybody else experienced this?

Being bilateral raises these other issues. I am also going to have herceptin injected into thigh over 2 to 5 minutes and chemo into porta cath and 2 to 5 minutes sounds fast for herceptin?

To everyone here a very happy and healthy 2018🙂

Best wishes Lisa

Jazzygirl

Hope- I had sentinel node dissection on both side and never have had BP done on my leg. I have been fortunate to not have an L from anything, but they do watch it closely and measure my arms each follow up.

I had a surgery about 6 weeks before my breast cancer surgery (a most unfortunate ride with a ruptured appendix) and my BP went high and never came down so I got put on licinopril (still on a low dose) during that recovery and was on it through the bc surgery. What I do know is that pain can drive up BP, per the visiting nurse who cared for me through both surgeries and follow ups.

Are you having pain from the surgery in November?

Dancefan

hi jazzygirl and thanks for your reply.
That must have been a terrible shock having the appendix rupture and the effects from that followed by the breast cancer surgery. But fortunately I don’t have any pain from surgery or any lymphedema. It just seems to be that they will not use my arms for the readings and my leg readings are so much higher. They say
They get good readings on other people’s legs and so i will just have to take whatever dose of medication that gets my blood pressure down for them to give me all the drugs I need.
Has your blood pressure normalised?
I think anxiety can certainly elevate it.
Lisa

BarredOwl

Hi hopelisa:

My calf readings are also high. However, I have had accurate readings taken on my lower thigh using an extra large cuff (ordinarily used for people whose arms are too large for the standard arm cuff). The stethoscope is placed behind the knee and a reading is taken from the popliteal artery. I have had this done several times now, twice by my PCP and once by a nurse, and all three readings were in the normal range.

BarredOwl

Gully

Hi Hopelisa

I do not have any trouble with taking BP measurements because I did not have lymph node surgery on the right side since it was supposed to be preventative due to neg biopsy they did not do a sentinel node test on that side. After the surprise of another cancer my MO wanted me to do the ALND but my surgeon said it was very unlikely that any of the nodes were affected so I opted to take the chance and not have the dissection done. This is why I chose to do the chemo. For better or worse it is what it is and I have no regrets thus far.

Chemo for me was doable. The first round was the easiest for me other than the fact I was scared out of my wits! The second round for me was harder because I caught a bug of some sort which spiked by WBC and made me feel really crappy...just barely escaped from being admitted to hospital. Rounds three and four were ok. For me each round made the fatigue last a few more days. I have read on these boards that many people gain weight while on chemo but as you mentioned I too have stomach issues...ginger helped me alot with this. Ginger tea, ginger candies, ginger ale, root whatever I could find. I lost 20ish pounds....I was about 106 or so when finished which probably made me feel weak as well. Hoping you fly through with no extra issues. Happy holidays and hang in there. My MO said something that helped me through he said "give me a year" and I will give you your life back" So far so good!

Dancefan

Hi BarredOwl

Thanks for your reply. Its good to hear that others also experience higher readings on the calf despite what the hospital says.

Its good to know blood pressure can be measured elsewhere and I will certainly ask them to take a lower thigh reading if they are still not happy with the calf readings at hospital on 5 January. I don’t want to have the medication increased again and be over medicated to the point of having symptoms of low blood pressure.

Thanks again for the info. I feel happier now that they can try another site and hopefully like you I should get a normal reading from there and I will get the 3 drug combination on 5th

Best wishes Lisa

Dancefan

Hi Gully


I too was scared out of my wits for the first chemo! They also couldn’t locate all my results so I was left on a saline drip for 3 and a half hours before they started the chemo. I sure all that didn’t help the blood pressure readings.


I will try the ginger thanks since I have lost about 3 pounds so far.

Thanks for your encouraging words. I definitely just want to get on with the treatments and be done with it in a year apart from hormone therapy. I see chemo as a friend despite the stomach issues and hope to get the blood pressure resolved and just get through it and put it behind me and onto the next stage of treatment
All the best
Lisa

Jazzygirl

Hope- yes, 2012 with the appendix and bc, pretty intense year. My BP is very good now, but am still on a low dose of bp meds (probably will be for the duration). I lost weight this year and that helped everything too.

Dancefan

hi jazzygirl


Hopefully I will get consistent, accurate readings and my blood pressure will stabilise as yours has done. After such a bad year for you in 2012 it just shows how the body can recover and overcome such an acute crisis as burst appendix, and two surgeries in close succession for appendix and breast cancer. Happy 2018.

Jazzygirl

Hope- yes, the body does heal in amazing ways. Hold on to that as you focus on your treatment and then be patient with yourself as you work to heal and get stronger on the other side of it. It takes longer than you think on the other side of cancer care and as you find your "new normal". Plus, everyone has their own process to get better, and the body does lead the way. As I like to say, life is not a competition nor is recovering from cancer treatment either.

Let us know how we can continue to help you as you go through everything friend

Dancefan

hi jazzygirl

Thank you for your concern and good advice - to try and be patient and not try to race to get better. I will post with updates and progress.

Very best wishes

Lisa

SummerAngel

I had a lot of trouble trying to get bp readings from my leg. Most nurses didn't even know how/hadn't ever tried it before - including the nurse at the Oncologist's office! When they did get a reading it was always high, and I've always had low blood pressure. I finally gave up and get my bp taken on my arms now. No issues so far.

SummerAngel

I just want to bump this thread because the Army of Women is looking into doing a study on those who have had cancer in both breasts. I would post a link but there is no official study yet, they're just trying to see if they can get enough participants. Go to their Facebook page and the info plus a 3-question survey is there.

I'm encouraging others because it's sometimes discouraging when reading studies to find that they nearly always exclude bilateral subjects.

Anonymous

I was diagnosed March, 2017 with bilateral breast cancer. Once the cancer was discovered in my right breast my breast surgeon pushed for an MRI to make sure we weren't missing anything. The MRI showed a tumor that was twice the size of the one on the right that was undetected by mammogram. I thank God she pushed for that MRI. My right breast was +/+/- but my left breast was +/+/+. Once the diagnosis in my left breast was made everything changed. At that point it was determined that I needed Chemo and a bilateral mastectomy was highly recommended. I chose to have the mastectomy because I had a lot going on in each breast. In the right not only did I have the mass I also had pre-cancerous calcifications. In the left in addition to the mass I had a group of pre-cancerous nodules.

Jazzygirl

Summer- thanks for the info. Here is the web site too. I keep my bc dx private so won't be lurking for info on FB about that for that reason.

https://www.armyofwomen.org/

My BS put me in to a study at Harvard as well, but never have heard much more about it after I gave my permission. She is big in to research.

I am almost to my five years ladies. I saw the MO's office this morning and am coming off the hormone suppression meds in March after 5 years. Everything else was good. They are keeping me on the Prolia shots for bone health for awhile though, which I think is good and know Prolia helps with lower reoccurrence risk too.

Ocean- an MRI found DCIS on the right side after they initially found DCIS/IDC on the left side. It looks like you are through treatment and recon. How are you doing?

Anonymous

Hi Jazzygirl,

I'm doing well. Thank you for asking! I just returned to work 2 weeks ago. I still have 3 more cycles of Herceptin to go. But then I will be done with all of that. Thank goodness!! My hair is beginning to come back. Enough that I was able to get a haircut before returning to work. Not much of one. More of a trim. Just enough to make it look like an intentional haircut! Then the funny thing was my first day back to work I came in and everybody was wearing pink breast cancer awareness hats in my honor! They had gotten me one, too. So my first day at work to be without a hat or scarf or something I ended up wearing a hat!! Lol I didn't mind, though!! They did it to honor me so I was proud to wear it!!

Jazzygirl

Ocean- that is really wonderful what your co-workers did. What a supportive welcome back to your job. You work in a great place!

My sister had HER2 positive as well and had a year of the herceptin and know that drags on. Hope you get that wrapped up and then continue on with your recovery. You go girl!

Anonymous

Yes I DO work in a great place!! They have been SO great while I've been off! And very welcoming since I've been back! I'm very lucky to have the work family I have!!

I am looking forward to being done with the Herceptin. It does seem to drag on forever. I know it's necessary but right now it just seems so pointless. I know it's not and I tell myself that every 3 weeks when I go to my appointment. I just want to be DONE!!

Jazzygirl

Ocean- You have three more treatments so like another 9-10 weeks until you are done? My sister used to have herceptin every three weeks for a like a year. She said the same thing, it drags on, but also just want to say it is really important to finish.

How about planning something nice for yourself when you are done to mark the completion of that phase of treatment? Nice dinner out, or something else you really enjoy? I did this after my rad were done, about to do it again as I reach my five years and finishing the hormone suppression treatment. I do better with rewards!

Anonymous

I should finish right around the anniversary of my left breast diagnosis, March 21. My birthday is April 6. So I'm thinking I would like to take my husband, my girls and their husband/fiance out for a celebration dinner. Because without them I would not have made it thru this year. They are the reason I got out of bed every day. At the end of April my oldest daughter is having my first grandchild!! So that's another reason to celebrate, too!! And my youngest daughter is engaged!! So we have lots of reasons to celebrate!!

Jazzygirl

Ocean- that sounds great. My birthday is end of March and I am coming off the AIs then. Nice birthday present, and same for you finishing your herceptin. You do have lots to celebrate! Make those special plans so you have something to look forward to!

To one Aries sister to another, you go girl!